Monday, March 29, 2010
Worth a Listen - Tony Judt on Fresh Air with Terry Gross
http://www.npr.org/templates/story/story.php?storyId=125231223
Tuesday, March 23, 2010
Maclen Muses – Explaining The Health Reform Bill
Explaining the Health Care Reform Bill By Mac Zilber
For those of you who know my mother, she has been advocating for universal health care since she moved to this country from Canada. She wanted me to write a guest blog for her to explain to her readers why, even though the health care reform that was passed yesterday is not quite universal, per se, it is a truly wonderful accomplishment for our country.
For those of you who know me, I am a policy wonk, so, rather than opinionate on the magnitude of this accomplishment, which, to be clear, I think is perhaps the greatest social achievement of our congress since Medicare, Medicaid, and Civil Rights, I am going to exercise my comparative advantage, which is to clarify to readers what exactly it is that this health care bill does.
The problems of the existing health care system that this bill sets out to remedy are the unparalleled costs of seeing a doctor in the United States (this is a good graph http://voices.washingtonpost.com/ezra-klein/2010/01/america_spends_way_way_way_mor.html) and the number of uninsured in the United States (about 50 million today, with another 20-30 million underinsured).
The uninsurance issue is dealt with by a tripod of regulating, mandating, and subsidizing insurance. Each leg of this tripod is necessary or the framework falls apart, as I will explain.
The regulations are numerous, and largely consist of piecemeal fixes to specific abuses by insurance companies. Insurance companies will no longer be able to take away your coverage if you get sick (While Carla has kept her coverage, nearly 50% of people who have medical expenses as high as hers lose their coverage), deny you coverage if you have a pre-existing condition, or charge you more because you’re a woman. There are a host of other regulations (the “doughnut hole” in Medicare is closed, youths like myself are allowed to stay on their parents’ health plan until they’re 26, and plenty more things that nibble around the edges), but these are the regulations that have received the most fanfare. The other important step towards ending the worst practices of insurance companies is reinsurance and risk-adjustment. Essentially, when an insured individual starts to cost large amounts of money to insurance company, there is a financial incentive for the insurance company to try to find a loophole by which they can drop that individual (though that will be much harder now). To remedy this, the government will set up a risk adjustment framework so that a sick person will be of the same expected value to an insurance company as a healthy person, thus removing that incentive. The final regulation I will discuss in this section is that there will be no more annual or lifetime caps on how much coverage you can receive, and out-of-pocket payments will be capped (at $5000 per year) as well. This is of incredible import to those of you in the ALS community whose out-of-pocket payments can extend above $100,000 per year. If this bill had been in effect when Carla got sick, she would likely have saved tens of thousands of dollars from the combination of all of these regulations.
Now, one of the most misunderstood parts of the plan is the individual mandate, which requires people to get health insurance, or, more aptly, creates a slight personal incentive towards getting health insurance. This has been mischaracterized as, alternately, a corporate buyout or a government takeover, but it is truly no such thing. Essentially, it says that, if you can afford health insurance (if the cheapest insurance plan available to you is less than 10% of your income), you need to buy it, or you will pay a penalty equal to 1% of your income. The reason for this is to prevent people from taking advantage of the new regulations by not signing up for insurance until they get sick.
Imagine a simplified insurance plan in which there are 5 people. One of them, say, Carla Zilber-Smith, costs the insurance company $50,000, and the other four cost the insurance company an average of $2,500, because they’re young and healthy, like, say, me. The insurance plan ends up costing $12,000 for each person (we’re removing administrative costs for this model), and, while it ain’t cheap, nobody goes bankrupt.
Now, imagine an alternate scenario in which I decide that, because I’m not currently sick, I won’t buy health insurance. Suddenly, the premiums of the remaining four people on the plan jump to about $15,000, and one of the other people can no longer afford the plan, and they leave the plan. The plan now costs $18,000 per person. Then I get sick, and my medical expenses are $50,000. Since the insurance company can’t deny me for pre-existing conditions, I re-join the plan, and the price per-person is now $26,000. At this point, the remaining two healthy people drop the plan, and the risk pool falls apart. This is known as the insurance death spiral. If you don’t allow insurance companies to deny for pre-existing conditions, you need to mandate “young invincibles” like me to buy insurance or the entire system goes into a death spiral, with only sick people buying health insurance.
Now, when you’re mandating people to buy a product, especially one as expensive as health care, you need to make it affordable, and that is where the subsidy part of the framework comes into play. For the first time ever, Medicaid will be available to any adult making under 133% of the poverty line (about $29,000 per year for a family of four), and, as a result, 17 million low-income individuals who are currently uninsured will be on Medicaid by 2016. People who aren’t poor but aren’t rich will receive a sliding scale of tax credits to make health care affordable for them, to the tune of about $80 billion dollars per year. This change will insure millions more people. This whole regulate-mandate-subsidize mechanism will ultimately reduce the number of uninsured Americans by around 32 million, meaning that, by 2016, 95% of Americans will be insured. It is also worth emphasizing that the bill requires that every insurance plan meet a certain standard of quality, so no only will 30 million people who would have been uninsured now have insurance, but tens of millions who are underinsured will now be more adequately insured. Finally, of the remaining 20 million or so who will be uninsured after this bill comes into effect, millions of them will be eligible for insurance, and will be able to enroll free of hassle if they become sick, and millions more are illegal immigrants. Indeed, if an immigration reform with a path to citizenship is passed, the number of people who aren’t either insured or operationally insured will drop to about 1-2% of the country.
To control costs, the health reform bill does a number of things, but there are three main ones: Bundling payments, an excise tax on high-dollar insurance plans, and the breaking up of insurance monopolies.
Bundling payments is arguably the most promising of the ways in which this bill controls costs. Currently, when you go to the doctor, your insurance company pays for each procedure individually, based on its marginal cost of the hospital. In economics, the cost of a service is typically the same as its marginal cost to the provider of the service, but, as Ken Arrow explained in his work on health and welfare economics, there is moral hazard and adverse selection at play when it comes to health payments. Say whaa? Essentially, what this means is that there is a financial incentive for a provider to give you insufficient treatment, or to over-treat you, because it means more treatments and more money. For instance, when I had a painful hot-spot on the bottom of my foot, it was misdiagnosed three times, I was given three prescriptions, three tests, sent to a specialist, and it turned out to be plain old athlete’s foot. I am not at all impugning the motives of the doctors involved, as they are great individuals, but the reality is that when you create an incentive scheme where such misdiagnoses are rewarded with more payment, you are going to have worse results. What this bill does is it creates a pilot program in which hospitals begin to be paid based on results, and what the cost should be, rather than the marginal cost is to them. In other words, a health care provider, if this is ultimately implemented systemwide, will know “I am going to receive X dollars to treat this specific symptom, therefore, I have nothing to gain by not doing it due diligence the first time around.” A provider of psychiatric health, who I will leave nameless, once told me that he sometimes feels the temptation to tell people that they aren’t cured, because his employer gets paid for each additional visit. By removing these incentives, this bill will allow doctors to have their good intentions and their financial incentives be aligned.
The excise tax on high-dollar insurance plans has been an oft-criticized part of the plan, and, much like the individual mandate, it is because it isn’t well understood. Essentially, every dollar over $27,500 that your employer spends on your health insurance plan is taxed at 40%. That means that, if your health insurance plan costs $28,000, the last $500 of it will be taxed, and you’ll pay a $200 tax on it.
The reason that this will control the growth of health care costs is that the current system, in which health insurance costs are exempted from taxation, creates a massive incentive towards overconsumption of health care, resulting in national per-person expenditures on health care that are over 70% above those of any other country in the world. How does this incentive work?
Imagine that Goldman Sachs has $500,000 to spend on a valuable and well-off employee. Each marginal dollar spent on her salary is taxed at 32%, whereas each marginal dollar spent on her health insurance plan is currently taxed at 0%. This means that, in a simplified model, without taking into account any of the nuances of the tax code, if this employee is given $490,000 in salary and $10,000 in health insurance, she’ll receive an after-tax salary value of $343,200. On the other hand, with the current incentive scheme in place, if she receives $450,000 in salary and $50,000 in health benefits, she will receive an after-tax salary value of $356,000. For any employee, health benefit spending will increase until it reaches an equilibrium in which the employee values $70 dollars of additional salary more than they value $100 of additional health benefits. This distortion in the incentive scheme is a huge reason that our health care costs rise at 7% per year.
Now, here is how the excise tax helps fight that. Going back to the example of the high-paid executive for Goldman Sachs, in the first year of the excise tax going into effect, her incentives, and the company’s incentives, point towards her health benefits dropping to $27,500, and her salary increasing to $472,500 to pick up the slack. Over time, this tax begins to affect more and more people, and, thus, squeezes more and more overconsumption out of the system.
The final way in which this bill will reduce costs is to create a competitive market for insurance. Currently, the vast majority health insurance markets would be considered to be in violation of anti-trust laws if the insurance industry didn’t have an anti-trust exemption. This will change that. Essentially, when you’re purchasing insurance, you will be able to go onto a website similar to Amazon.com (product placement, yay) in which all insurance plans in your state are compared side-to-side, with reviews, ratings, benefits, etc. Imagine if you called every car dealer within a 50 mile radius and said “I am going to buy a car, and I am calling every car dealer in a 50 mile radius. Whoever makes me the best offer will make the sale.” It would be pretty hard for a car salesman to gouge you on the price, huh? Similarly, by listing all plans next to each other in a competitive market with community rating, insurance companies won’t be able to jack up prices or reduce benefits without you, the customer, being able to switch plans. By 2019, 8 million people will have switched from their current plan to purchasing health insurance on the exchanges, and an additional 16 million people who were uninsured will have purchased health insurance on the exchange. By giving the consumer power, costs will be controlled, and insurance companies will have to compete in the good old fashioned way; by offering a better deal than their competitors.
The last question people typically ask is how we are going to pay for this. The costs per year, once the plan is in place, will be about $160 billion per year, or about 1% of our economy. The tax on Cadillac plans, a small payroll surtax on the wealthy, and certain fees to be payed by insurance companies, drug companies, and hospitals, will yield about $70 billion per year (though this number will increase substantially after about 10 years). Targeted cuts in Medicare waste and fraud, as well as some of the aforementioned cost controls, should save about $100 billion per year, though this number will also increase over time. Over the first ten years, this bill will yield a surplus of about $138 billion dollars (a relatively small amount, over ten years, but a surplus nonetheless). Over 20 years, this bill will reduce deficits by over one trillion dollars, though many economists believe the number will likely be even larger than this. This bill on its own will not prevent a sovereign debt crisis, barring further action, but it will be the most fiscally responsible bill that congress has passed since the Clinton budget of 1993.
At the end of the day, though hundreds of billions of dollars, tens of millions of insured people, and tens of thousands of saved lives will all be nice perks, I think that Carla has the best sales pitch for what may prove to be the crowning social achievement of our generation: “For the first time in our country’s history, if you’re sick, no matter who you are, you can see a fucking doctor.”
Mac Zilber is Carla Zilber-Smith's son. He is studying American Politics and Comparative Politics at the University of California at San Diego, and is the Director of Policy for the UCSD Student Government. He is a huge nerd. The kind who you would probably push into a locker if he wasn't six feet tall, funny, and good-looking. And yes, he wrote this blurb, and is just talking about himself in the third person. Feel free to ask him any further questions, as he is willing to talk ad nauseum about policy, and he figures he probably has at least one unclear sentence, given that this blog is ten pages long and wasn't really edited.
For those of you who know my mother, she has been advocating for universal health care since she moved to this country from Canada. She wanted me to write a guest blog for her to explain to her readers why, even though the health care reform that was passed yesterday is not quite universal, per se, it is a truly wonderful accomplishment for our country.
For those of you who know me, I am a policy wonk, so, rather than opinionate on the magnitude of this accomplishment, which, to be clear, I think is perhaps the greatest social achievement of our congress since Medicare, Medicaid, and Civil Rights, I am going to exercise my comparative advantage, which is to clarify to readers what exactly it is that this health care bill does.
The problems of the existing health care system that this bill sets out to remedy are the unparalleled costs of seeing a doctor in the United States (this is a good graph http://voices.washingtonpost.com/ezra-klein/2010/01/america_spends_way_way_way_mor.html) and the number of uninsured in the United States (about 50 million today, with another 20-30 million underinsured).
The uninsurance issue is dealt with by a tripod of regulating, mandating, and subsidizing insurance. Each leg of this tripod is necessary or the framework falls apart, as I will explain.
The regulations are numerous, and largely consist of piecemeal fixes to specific abuses by insurance companies. Insurance companies will no longer be able to take away your coverage if you get sick (While Carla has kept her coverage, nearly 50% of people who have medical expenses as high as hers lose their coverage), deny you coverage if you have a pre-existing condition, or charge you more because you’re a woman. There are a host of other regulations (the “doughnut hole” in Medicare is closed, youths like myself are allowed to stay on their parents’ health plan until they’re 26, and plenty more things that nibble around the edges), but these are the regulations that have received the most fanfare. The other important step towards ending the worst practices of insurance companies is reinsurance and risk-adjustment. Essentially, when an insured individual starts to cost large amounts of money to insurance company, there is a financial incentive for the insurance company to try to find a loophole by which they can drop that individual (though that will be much harder now). To remedy this, the government will set up a risk adjustment framework so that a sick person will be of the same expected value to an insurance company as a healthy person, thus removing that incentive. The final regulation I will discuss in this section is that there will be no more annual or lifetime caps on how much coverage you can receive, and out-of-pocket payments will be capped (at $5000 per year) as well. This is of incredible import to those of you in the ALS community whose out-of-pocket payments can extend above $100,000 per year. If this bill had been in effect when Carla got sick, she would likely have saved tens of thousands of dollars from the combination of all of these regulations.
Now, one of the most misunderstood parts of the plan is the individual mandate, which requires people to get health insurance, or, more aptly, creates a slight personal incentive towards getting health insurance. This has been mischaracterized as, alternately, a corporate buyout or a government takeover, but it is truly no such thing. Essentially, it says that, if you can afford health insurance (if the cheapest insurance plan available to you is less than 10% of your income), you need to buy it, or you will pay a penalty equal to 1% of your income. The reason for this is to prevent people from taking advantage of the new regulations by not signing up for insurance until they get sick.
Imagine a simplified insurance plan in which there are 5 people. One of them, say, Carla Zilber-Smith, costs the insurance company $50,000, and the other four cost the insurance company an average of $2,500, because they’re young and healthy, like, say, me. The insurance plan ends up costing $12,000 for each person (we’re removing administrative costs for this model), and, while it ain’t cheap, nobody goes bankrupt.
Now, imagine an alternate scenario in which I decide that, because I’m not currently sick, I won’t buy health insurance. Suddenly, the premiums of the remaining four people on the plan jump to about $15,000, and one of the other people can no longer afford the plan, and they leave the plan. The plan now costs $18,000 per person. Then I get sick, and my medical expenses are $50,000. Since the insurance company can’t deny me for pre-existing conditions, I re-join the plan, and the price per-person is now $26,000. At this point, the remaining two healthy people drop the plan, and the risk pool falls apart. This is known as the insurance death spiral. If you don’t allow insurance companies to deny for pre-existing conditions, you need to mandate “young invincibles” like me to buy insurance or the entire system goes into a death spiral, with only sick people buying health insurance.
Now, when you’re mandating people to buy a product, especially one as expensive as health care, you need to make it affordable, and that is where the subsidy part of the framework comes into play. For the first time ever, Medicaid will be available to any adult making under 133% of the poverty line (about $29,000 per year for a family of four), and, as a result, 17 million low-income individuals who are currently uninsured will be on Medicaid by 2016. People who aren’t poor but aren’t rich will receive a sliding scale of tax credits to make health care affordable for them, to the tune of about $80 billion dollars per year. This change will insure millions more people. This whole regulate-mandate-subsidize mechanism will ultimately reduce the number of uninsured Americans by around 32 million, meaning that, by 2016, 95% of Americans will be insured. It is also worth emphasizing that the bill requires that every insurance plan meet a certain standard of quality, so no only will 30 million people who would have been uninsured now have insurance, but tens of millions who are underinsured will now be more adequately insured. Finally, of the remaining 20 million or so who will be uninsured after this bill comes into effect, millions of them will be eligible for insurance, and will be able to enroll free of hassle if they become sick, and millions more are illegal immigrants. Indeed, if an immigration reform with a path to citizenship is passed, the number of people who aren’t either insured or operationally insured will drop to about 1-2% of the country.
To control costs, the health reform bill does a number of things, but there are three main ones: Bundling payments, an excise tax on high-dollar insurance plans, and the breaking up of insurance monopolies.
Bundling payments is arguably the most promising of the ways in which this bill controls costs. Currently, when you go to the doctor, your insurance company pays for each procedure individually, based on its marginal cost of the hospital. In economics, the cost of a service is typically the same as its marginal cost to the provider of the service, but, as Ken Arrow explained in his work on health and welfare economics, there is moral hazard and adverse selection at play when it comes to health payments. Say whaa? Essentially, what this means is that there is a financial incentive for a provider to give you insufficient treatment, or to over-treat you, because it means more treatments and more money. For instance, when I had a painful hot-spot on the bottom of my foot, it was misdiagnosed three times, I was given three prescriptions, three tests, sent to a specialist, and it turned out to be plain old athlete’s foot. I am not at all impugning the motives of the doctors involved, as they are great individuals, but the reality is that when you create an incentive scheme where such misdiagnoses are rewarded with more payment, you are going to have worse results. What this bill does is it creates a pilot program in which hospitals begin to be paid based on results, and what the cost should be, rather than the marginal cost is to them. In other words, a health care provider, if this is ultimately implemented systemwide, will know “I am going to receive X dollars to treat this specific symptom, therefore, I have nothing to gain by not doing it due diligence the first time around.” A provider of psychiatric health, who I will leave nameless, once told me that he sometimes feels the temptation to tell people that they aren’t cured, because his employer gets paid for each additional visit. By removing these incentives, this bill will allow doctors to have their good intentions and their financial incentives be aligned.
The excise tax on high-dollar insurance plans has been an oft-criticized part of the plan, and, much like the individual mandate, it is because it isn’t well understood. Essentially, every dollar over $27,500 that your employer spends on your health insurance plan is taxed at 40%. That means that, if your health insurance plan costs $28,000, the last $500 of it will be taxed, and you’ll pay a $200 tax on it.
The reason that this will control the growth of health care costs is that the current system, in which health insurance costs are exempted from taxation, creates a massive incentive towards overconsumption of health care, resulting in national per-person expenditures on health care that are over 70% above those of any other country in the world. How does this incentive work?
Imagine that Goldman Sachs has $500,000 to spend on a valuable and well-off employee. Each marginal dollar spent on her salary is taxed at 32%, whereas each marginal dollar spent on her health insurance plan is currently taxed at 0%. This means that, in a simplified model, without taking into account any of the nuances of the tax code, if this employee is given $490,000 in salary and $10,000 in health insurance, she’ll receive an after-tax salary value of $343,200. On the other hand, with the current incentive scheme in place, if she receives $450,000 in salary and $50,000 in health benefits, she will receive an after-tax salary value of $356,000. For any employee, health benefit spending will increase until it reaches an equilibrium in which the employee values $70 dollars of additional salary more than they value $100 of additional health benefits. This distortion in the incentive scheme is a huge reason that our health care costs rise at 7% per year.
Now, here is how the excise tax helps fight that. Going back to the example of the high-paid executive for Goldman Sachs, in the first year of the excise tax going into effect, her incentives, and the company’s incentives, point towards her health benefits dropping to $27,500, and her salary increasing to $472,500 to pick up the slack. Over time, this tax begins to affect more and more people, and, thus, squeezes more and more overconsumption out of the system.
The final way in which this bill will reduce costs is to create a competitive market for insurance. Currently, the vast majority health insurance markets would be considered to be in violation of anti-trust laws if the insurance industry didn’t have an anti-trust exemption. This will change that. Essentially, when you’re purchasing insurance, you will be able to go onto a website similar to Amazon.com (product placement, yay) in which all insurance plans in your state are compared side-to-side, with reviews, ratings, benefits, etc. Imagine if you called every car dealer within a 50 mile radius and said “I am going to buy a car, and I am calling every car dealer in a 50 mile radius. Whoever makes me the best offer will make the sale.” It would be pretty hard for a car salesman to gouge you on the price, huh? Similarly, by listing all plans next to each other in a competitive market with community rating, insurance companies won’t be able to jack up prices or reduce benefits without you, the customer, being able to switch plans. By 2019, 8 million people will have switched from their current plan to purchasing health insurance on the exchanges, and an additional 16 million people who were uninsured will have purchased health insurance on the exchange. By giving the consumer power, costs will be controlled, and insurance companies will have to compete in the good old fashioned way; by offering a better deal than their competitors.
The last question people typically ask is how we are going to pay for this. The costs per year, once the plan is in place, will be about $160 billion per year, or about 1% of our economy. The tax on Cadillac plans, a small payroll surtax on the wealthy, and certain fees to be payed by insurance companies, drug companies, and hospitals, will yield about $70 billion per year (though this number will increase substantially after about 10 years). Targeted cuts in Medicare waste and fraud, as well as some of the aforementioned cost controls, should save about $100 billion per year, though this number will also increase over time. Over the first ten years, this bill will yield a surplus of about $138 billion dollars (a relatively small amount, over ten years, but a surplus nonetheless). Over 20 years, this bill will reduce deficits by over one trillion dollars, though many economists believe the number will likely be even larger than this. This bill on its own will not prevent a sovereign debt crisis, barring further action, but it will be the most fiscally responsible bill that congress has passed since the Clinton budget of 1993.
At the end of the day, though hundreds of billions of dollars, tens of millions of insured people, and tens of thousands of saved lives will all be nice perks, I think that Carla has the best sales pitch for what may prove to be the crowning social achievement of our generation: “For the first time in our country’s history, if you’re sick, no matter who you are, you can see a fucking doctor.”
Mac Zilber is Carla Zilber-Smith's son. He is studying American Politics and Comparative Politics at the University of California at San Diego, and is the Director of Policy for the UCSD Student Government. He is a huge nerd. The kind who you would probably push into a locker if he wasn't six feet tall, funny, and good-looking. And yes, he wrote this blurb, and is just talking about himself in the third person. Feel free to ask him any further questions, as he is willing to talk ad nauseum about policy, and he figures he probably has at least one unclear sentence, given that this blog is ten pages long and wasn't really edited.
Sunday, March 21, 2010
Reminder
A Night of Gratitude - A Special Evening With Carla Zilbersmith
Tuesday, March 23, 2010
Time:6:30pm - 8:30pm
Location:
Novato Seventh-day Adventist Church
495 San Marin Drive
Novato, CA
Description
Carla (the star of Leave Them Laughing, directed by John Zaritsky) will be giving an extremely rare lecture about her life and how she learned to appreciate the beauty of every moment despite being diagnosed with a fatal illness, ALS (Lou Gehrig's Disease). Carla has truly learned how to embrace every succulent moment and she'll show you why you should too.
Come for inspiration. Leave changed.
To reserve tickets or for more info,
Email: ANightOfGratitude@gmail.com
or call 415-497-2313
$15 donation requested
For more than fifteen years, Carla Zilbersmith wrote and presented an amazing array of musical and theatrical scores, scripts, one-woman plays, and songs. Carla and her band the SubUrbans were Lilith Fair finalists, she was the founding member of We’re Redheads, a women’s sketch comedy troupe, and Lighten Up John, a musical improv group, as well as serving as the Artistic Director of the College of Marin Drama Department before ALS rendered her unable to perform, sing, or teach.
Tuesday, March 23, 2010
Time:6:30pm - 8:30pm
Location:
Novato Seventh-day Adventist Church
495 San Marin Drive
Novato, CA
Description
Carla (the star of Leave Them Laughing, directed by John Zaritsky) will be giving an extremely rare lecture about her life and how she learned to appreciate the beauty of every moment despite being diagnosed with a fatal illness, ALS (Lou Gehrig's Disease). Carla has truly learned how to embrace every succulent moment and she'll show you why you should too.
Come for inspiration. Leave changed.
To reserve tickets or for more info,
Email: ANightOfGratitude@gmail.com
or call 415-497-2313
$15 donation requested
For more than fifteen years, Carla Zilbersmith wrote and presented an amazing array of musical and theatrical scores, scripts, one-woman plays, and songs. Carla and her band the SubUrbans were Lilith Fair finalists, she was the founding member of We’re Redheads, a women’s sketch comedy troupe, and Lighten Up John, a musical improv group, as well as serving as the Artistic Director of the College of Marin Drama Department before ALS rendered her unable to perform, sing, or teach.
Monday, March 15, 2010
What This Night Is Like
It’s somehow coming to the conclusion that the only way to make this night tolerable is write a blog (maybe the first ever) while on the toilet unable to shit.
It’s waking up in the morning and checking Facebook to see that you’ve lost another friend. Nobody unfriended you or defriended you. They just had ALS and they died.
It’s one minute caring a lot about a hair style or the latest crazy idea turned into a big project and wishing the next minute that you could just die already.
It’s feeling a fist sized shit rip your asshole open and not being able to bear down or catch a breath. It’s that you have this feeling not once but twice in one day even though you cut out morphine and had a prune smoothie.
It’s 21 drugs and counting and wondering when you will be dubbed the fucking Baskin Robbins of pill poppers.
It’s realizing that expecting a clear sign that it’s time to die is like driving down a pitch black remote country road and expecting to hear “All Things Considered” or “Wait, Wait, Don’t Tell Me,” instead of hours of white noise and static mixed with snippets of some crazy fundamentalist ranting about the gays and the Jews.
It’s paying a heavy price for every fun day.
It’s wondering why the others like Megan or Scott seem to handle so much more crap than you do and wondering if you are a wimp or if you’ve just had enough.
It’s running out of words but still not passing this fucking ball of shit.
It’s realizing that life is a no good rotten man who beats on you and cheats on you and looks just like Jon Hamm as he stares in your eyes and whispers softly “come on baby, you know we are meant for each other.” And instead of wanting to quit him, you wanna hang in there for one more great shag. Fuck you Jon Hamm.
It’s knowing that someone is going to commiserate with you by saying, “Girl, I know what you mean. I was constipated once” and you are going to have to bite your tongue and not say, “Unless you have ALS, you do NOT know how I feel unless you’ve rubbed a cheese grater across your asshole for a good 10 minutes at least.”
It’s exhausting.
It’s waking up in the morning and checking Facebook to see that you’ve lost another friend. Nobody unfriended you or defriended you. They just had ALS and they died.
It’s one minute caring a lot about a hair style or the latest crazy idea turned into a big project and wishing the next minute that you could just die already.
It’s feeling a fist sized shit rip your asshole open and not being able to bear down or catch a breath. It’s that you have this feeling not once but twice in one day even though you cut out morphine and had a prune smoothie.
It’s 21 drugs and counting and wondering when you will be dubbed the fucking Baskin Robbins of pill poppers.
It’s realizing that expecting a clear sign that it’s time to die is like driving down a pitch black remote country road and expecting to hear “All Things Considered” or “Wait, Wait, Don’t Tell Me,” instead of hours of white noise and static mixed with snippets of some crazy fundamentalist ranting about the gays and the Jews.
It’s paying a heavy price for every fun day.
It’s wondering why the others like Megan or Scott seem to handle so much more crap than you do and wondering if you are a wimp or if you’ve just had enough.
It’s running out of words but still not passing this fucking ball of shit.
It’s realizing that life is a no good rotten man who beats on you and cheats on you and looks just like Jon Hamm as he stares in your eyes and whispers softly “come on baby, you know we are meant for each other.” And instead of wanting to quit him, you wanna hang in there for one more great shag. Fuck you Jon Hamm.
It’s knowing that someone is going to commiserate with you by saying, “Girl, I know what you mean. I was constipated once” and you are going to have to bite your tongue and not say, “Unless you have ALS, you do NOT know how I feel unless you’ve rubbed a cheese grater across your asshole for a good 10 minutes at least.”
It’s exhausting.
Fundraiser Posted by my friend, Gina
A Night Of Gratitude
A Special Evening With
Carla Zilbersmith
Tuesday, March 23rd
6:30pm
Novato Seventh-day Adventist Church
495 San Marin Dr., Novato
Carla will be giving an extremely rare lecture about her life and how she learned to appreciate the beauty of every moment despite being diagnosed with a fatal illness, ALS (Lou Gehrig's Disease). Carla has truly learned how to embrace every succulent moment and she'll show you why you should too.
Come for inspiration. Leave changed.
To reserve tickets or for more info,
Email: ANightOfGratitude@gmail.com
or call 415-497-2313
$15 donation requested
For more than fifteen years, Carla Zilbersmith wrote and presented an amazing array of musical and theatrical scores, scripts, one-woman plays, and songs. Carla and her band the SubUrbans were Lilith Fair finalists, she was the founding member of We’re Redheads, a women’s sketch comedy troupe, and Lighten Up John, a musical improv group, as well as serving as the Artistic Director of the College of Marin Drama Department before ALS rendered her unable to perform, sing, or teach.
A Special Evening With
Carla Zilbersmith
Tuesday, March 23rd
6:30pm
Novato Seventh-day Adventist Church
495 San Marin Dr., Novato
Carla will be giving an extremely rare lecture about her life and how she learned to appreciate the beauty of every moment despite being diagnosed with a fatal illness, ALS (Lou Gehrig's Disease). Carla has truly learned how to embrace every succulent moment and she'll show you why you should too.
Come for inspiration. Leave changed.
To reserve tickets or for more info,
Email: ANightOfGratitude@gmail.com
or call 415-497-2313
$15 donation requested
For more than fifteen years, Carla Zilbersmith wrote and presented an amazing array of musical and theatrical scores, scripts, one-woman plays, and songs. Carla and her band the SubUrbans were Lilith Fair finalists, she was the founding member of We’re Redheads, a women’s sketch comedy troupe, and Lighten Up John, a musical improv group, as well as serving as the Artistic Director of the College of Marin Drama Department before ALS rendered her unable to perform, sing, or teach.
Saturday, March 13, 2010
Happy Birthday Kaila
In the late 1990's, I was driving to work and listening to the radio when a haunting and compelling artist was introduced to me. Her music affected me so much that I pulled off the highway to write down her name. After work I drove straight to Down Home Records and bought Kaila Flexer-Third Ear. Little did I know that ten years later this amazing composer and violinist would be one of my best friends and one of a small handful of people who would dedicate time every week without fail to the grunt work of helping me out. I don't know anyone with more responsibilities than Kaila and yet she has made it a priority to be there for me for all the tough stuff - overnights with coughing and suctioning machines malfunctioning, getting me ready to go onstage while I howl and sob like a wounded animal, ruining my make-up in the process and taking me out for dinner and having to feed us both.
Kaila balances her performing career and her teaching career with raising the most remarkable ten year old daughter, Lucy. Kaila 's ex is a touring musician so while she is not really a single mom, her life often looks like she is one. How she manages to find time each week for me is anybody's guess
Kaila has written not one but three beautiful pieces of music for me. One of them is posted after this blog and if you like what you hear, go to www. kailaflexer.com. There are so many legitimate reasons people have for not carving out time in a busy life to help a sick friend and Kaila could use almost all of them but instead she chooses the tougher road. But this is not why I love her. I love her passion and her indefatigable romantic spirit. I love her irritating perfectionism and her unwavering artist integrity. I am stirred by her moral outrage and wickedly amused by her lady like sensibilities that I disturb on a regular basis. Kaila is an amazing mother and the fierceness of her love has paid off. Her daughter is a strong, independent, creative and hilarious kid whose visits beam a floodlight of joy onto my day. But Kaila is not just mother to Lucy, she is maternal to friends in need too. She is the kind of friend who will drive you to the airport, fix you the perfect snack or move heaven and earth to help you in your performing career. She is also unusually beautiful. When Kaila plays music this fiery passion consumes her so even straight women thinks she 's hot.
I like to tease Kaila about how easily she cries (we're talkin' so so easy) but truth be told I envy her overflow of compassion I am moved by the way she feels so deeply on someone else's behalf.
So here's to my beautiful crazy brilliant loving friend. Happy Birthday Special K! I love you. .
Kaila balances her performing career and her teaching career with raising the most remarkable ten year old daughter, Lucy. Kaila 's ex is a touring musician so while she is not really a single mom, her life often looks like she is one. How she manages to find time each week for me is anybody's guess
Kaila has written not one but three beautiful pieces of music for me. One of them is posted after this blog and if you like what you hear, go to www. kailaflexer.com. There are so many legitimate reasons people have for not carving out time in a busy life to help a sick friend and Kaila could use almost all of them but instead she chooses the tougher road. But this is not why I love her. I love her passion and her indefatigable romantic spirit. I love her irritating perfectionism and her unwavering artist integrity. I am stirred by her moral outrage and wickedly amused by her lady like sensibilities that I disturb on a regular basis. Kaila is an amazing mother and the fierceness of her love has paid off. Her daughter is a strong, independent, creative and hilarious kid whose visits beam a floodlight of joy onto my day. But Kaila is not just mother to Lucy, she is maternal to friends in need too. She is the kind of friend who will drive you to the airport, fix you the perfect snack or move heaven and earth to help you in your performing career. She is also unusually beautiful. When Kaila plays music this fiery passion consumes her so even straight women thinks she 's hot.
I like to tease Kaila about how easily she cries (we're talkin' so so easy) but truth be told I envy her overflow of compassion I am moved by the way she feels so deeply on someone else's behalf.
So here's to my beautiful crazy brilliant loving friend. Happy Birthday Special K! I love you. .
Wednesday, March 03, 2010
News Flash: There are literally thousands of religions
I received what I believe was a very well intentioned blog comment the other day. I have had many of these kinds of comments and the blog below is one that has been a work in progress, which I come back to every time someone expresses concern for my immortal soul. I’ve never had the guts to actually post it lest someone take it the wrong way, but here goes:
The lady who wrote me this time hoped that when my suffering ends, I would be able to rejoice for eternity in a new and perfect body if I simply confessed my sins, believed on (sic) the name of Jesus as the son of God, and asked Him to save me.
First of all, my caregiver Alexa wanted to know if my new perfect body would have red hair and great tits because otherwise it would be a downgrade. Second of all, some of my best friends love Jesus and third I want to say to anyone who follows any faith that I’m happy you have a source of comfort in your spiritual beliefs. I can only surmise that these beliefs are very deep and profound for you and have helped you tackle the challenges in your life. You found something valuable and I understand the desire to share it but give me a little credit, will you?
That being said, I am not a Christian. I am a very spiritual person and it is for that reason that I have difficulty aligning myself with any given faith. When my brother and I were young, he believed that God invented all major religions so that people with different ways of worshipping could all feel a part of something. It was a charming and hopeful theory, one that put the brightest face on the way in which humanity has used God, faith and religious beliefs to commit unthinkable crimes. Sadly, I must say that ever since the Middle Ages the Christians have been the top contender for the gold medal of the Atrocity Olympics.
But what does that have to do with Jesus, you might ask? Very good question. After all, should he be held accountable for all of the cruelty and evil that have been done in his name? If we look at Bible II – The Return of the Son, do we not find in all of his teachings the keys to compassion, to equality, to social and economic justice?
Hell yeah.
Muslims believe Jesus was a prophet. Some Jews call him Rabbi. Historians versed in Aramaic would use literal translations of the text recounting Jesus’ last days to prove he was a revolutionary—a Che in sandals. Did you know that the Aramaic word that we have translated as garden (as in Garden of Gethsemane) is more literally translated as fortress? Many scholars believe Jesus and the Apostles did not surrender peacefully to the Romans after a kiss on the cheek but rather, fought to hold off their foes behind the formidable walls of Gesthemane.
Did you know that the Gospels of Matthew, Mark and John are wildly different in their accounts of Jesus’ last days? It’s my guess that Jesus was probably a composite character of a number of amazing men: rabbis, prophets and revolutionaries. All of these men, no doubt touched the lives of the people with whom they came in contact. None of them, I would imagine, turned loaves into fishes, walked on water or rose from the dead; but when we encounter someone so much larger than ourselves, someone who is capable of expressing so much more than we can, why not say, “He came back to life.” Or “He turned water into wine. Because the miracle of encountering such a person is so over-whelming that only metaphor can do the experience justice.
That’s why for me, God is in the first movement of Beethoven’s Third Symphony. God is the soft touch of lips on skin. And God is in people, like someone (let’s just call him… Jesus) who leave the world better than it was when they arrived.
I don’t want to convince anybody that their religious faith is not real or valid. I’m just letting you know that sometimes you need to find out to whom you’re talking to before you tell her that Jesus is the only answer. You may be talking to someone with deep roots in another religion. You may be talking to someone who is dying and who resents being told how to do something that you yourself will not (I hope) be experiencing for sometime. You may be talking to someone who has studied biblical history or who has read so much of the Sufi poets’ devotional works to God that she can recite dozens off by heart. You may be talking to someone who spends a considerable chunk of every day thinking about theological/spiritual issues and doesn’t need or want your guidance in such an intimate choice. Make up your mind: are you a devout follower of an ancient religion or are you a glorified Amway salesman? If you are the former, you will accept me for who I am. If not, I don’t want any.
I love my notion of Jesus. I love to imagine a modern-day Jesus preaching gay marriage, universal health care, love, sex, beauty, art, passion, socialism and whatever else came to his head. But the thing I love most about this guy, the one in my imagination, is that he’s not going to die if I don’t believe in him because HE’S JESUS NOT FRICKING TINKERBELL. Plus he’s already dead.
Maybe twice.
Maybe not, who knows.
Jesus believes in me just as much as I believe in him because to do otherwise would rob his followers of personal responsibility and independent thought. Finally, this modern-day Jesus would not attract some of the people that worship the old Jesus (like Pat Robertson, lots o’ Republicans and any other douche bags who go around hate-mongering in his name) but he would attract generous, talented, hard-working people…like you Christian people I love and respect.
I close with a friend of mine who expresses these ideas better than I can. Plus the blog post directly below this one is from another friend, Roy Zimmerman, who has his own interpretation of this argument.
Jesus Incognito
By Alison Luterman
(from The Largest Possible Life)
Don’t tell anyone, but I love Jesus.
I love his big dark Jewish eyes, so full of suffering soul,
like an unemployed poet’s, and his thick sensuous Jewish lips,
and his kinky curly hair, just like mine, uncontrollable despite conditioners,
and the way he always argues with everyone
and will go to hell for love.
He’s just like that Buddhist god Avalokiteshvara, the bodhisattva of compassion,
except his name is easier to pronounce.
When you’re in trouble it’s hard to remember to yell for Avalokiteshvara,
but “Oh Jesus!” arises naturally
every time a crazy driver hot-dogs past me on the freeway.
I know I should say the Shema when I’m about to die,
but will I be able to remember Hebrew at a time like that?
I don’t want to die saying “Oh shit!”
I’d like to leave my body consciously, like a Tibetan lama, sitting in full lotus
with my head turned toward where I’ll reincarnate next.
But let’s be realistic: I probably couldn’t meditate enough to become enlightened
in the however-many years I have left.
Jesus seems easier. All you have to do is love everyone.
Well, seems is the key word here.
Sometimes the more you try
to love people, the more you hate them.
Maybe it would be better to try
not to love people, and then watch the love
force its way out of you like grass through cement.
Anything is better than organized religion.
I don’t like the singing in churches — all those hymns in major keys.
I don’t think religion should sound so triumphant.
It should be humble and aware of the basic incurable pathos of the human condition,
and in a minor key and sung in a mysterious ancient language, like Sanskrit or Hebrew.
Is it OK for me to love Jesus but not be Christian?
I could try to open my heart and give away all my possessions.
It’s not that different from being Buddhist, after all, except for a history
of witch burnings, the Inquisition, the subjugation,
rape, and pillage of indigenous peoples all over the world,
not to mention twenty centuries of vicious anti-Semitism. That’s a lot to overlook
to get back to a baby born among animals to a Jewish mother, Miryam.
And what about that other Mary, the sexy one? Jesus, I don’t believe you died a virgin.
I think you needed to taste everything human, to inhabit the whole mess:
blood, shit, flies, regret, envy, why-me.
I owe you and all the other bodhisattvas and sages
and newborn babies a debt of thanks
for agreeing to come back and marry yourselves
to our painful predicament again and again —
and I do thank you, bowing to the infinite directions.
The lady who wrote me this time hoped that when my suffering ends, I would be able to rejoice for eternity in a new and perfect body if I simply confessed my sins, believed on (sic) the name of Jesus as the son of God, and asked Him to save me.
First of all, my caregiver Alexa wanted to know if my new perfect body would have red hair and great tits because otherwise it would be a downgrade. Second of all, some of my best friends love Jesus and third I want to say to anyone who follows any faith that I’m happy you have a source of comfort in your spiritual beliefs. I can only surmise that these beliefs are very deep and profound for you and have helped you tackle the challenges in your life. You found something valuable and I understand the desire to share it but give me a little credit, will you?
That being said, I am not a Christian. I am a very spiritual person and it is for that reason that I have difficulty aligning myself with any given faith. When my brother and I were young, he believed that God invented all major religions so that people with different ways of worshipping could all feel a part of something. It was a charming and hopeful theory, one that put the brightest face on the way in which humanity has used God, faith and religious beliefs to commit unthinkable crimes. Sadly, I must say that ever since the Middle Ages the Christians have been the top contender for the gold medal of the Atrocity Olympics.
But what does that have to do with Jesus, you might ask? Very good question. After all, should he be held accountable for all of the cruelty and evil that have been done in his name? If we look at Bible II – The Return of the Son, do we not find in all of his teachings the keys to compassion, to equality, to social and economic justice?
Hell yeah.
Muslims believe Jesus was a prophet. Some Jews call him Rabbi. Historians versed in Aramaic would use literal translations of the text recounting Jesus’ last days to prove he was a revolutionary—a Che in sandals. Did you know that the Aramaic word that we have translated as garden (as in Garden of Gethsemane) is more literally translated as fortress? Many scholars believe Jesus and the Apostles did not surrender peacefully to the Romans after a kiss on the cheek but rather, fought to hold off their foes behind the formidable walls of Gesthemane.
Did you know that the Gospels of Matthew, Mark and John are wildly different in their accounts of Jesus’ last days? It’s my guess that Jesus was probably a composite character of a number of amazing men: rabbis, prophets and revolutionaries. All of these men, no doubt touched the lives of the people with whom they came in contact. None of them, I would imagine, turned loaves into fishes, walked on water or rose from the dead; but when we encounter someone so much larger than ourselves, someone who is capable of expressing so much more than we can, why not say, “He came back to life.” Or “He turned water into wine. Because the miracle of encountering such a person is so over-whelming that only metaphor can do the experience justice.
That’s why for me, God is in the first movement of Beethoven’s Third Symphony. God is the soft touch of lips on skin. And God is in people, like someone (let’s just call him… Jesus) who leave the world better than it was when they arrived.
I don’t want to convince anybody that their religious faith is not real or valid. I’m just letting you know that sometimes you need to find out to whom you’re talking to before you tell her that Jesus is the only answer. You may be talking to someone with deep roots in another religion. You may be talking to someone who is dying and who resents being told how to do something that you yourself will not (I hope) be experiencing for sometime. You may be talking to someone who has studied biblical history or who has read so much of the Sufi poets’ devotional works to God that she can recite dozens off by heart. You may be talking to someone who spends a considerable chunk of every day thinking about theological/spiritual issues and doesn’t need or want your guidance in such an intimate choice. Make up your mind: are you a devout follower of an ancient religion or are you a glorified Amway salesman? If you are the former, you will accept me for who I am. If not, I don’t want any.
I love my notion of Jesus. I love to imagine a modern-day Jesus preaching gay marriage, universal health care, love, sex, beauty, art, passion, socialism and whatever else came to his head. But the thing I love most about this guy, the one in my imagination, is that he’s not going to die if I don’t believe in him because HE’S JESUS NOT FRICKING TINKERBELL. Plus he’s already dead.
Maybe twice.
Maybe not, who knows.
Jesus believes in me just as much as I believe in him because to do otherwise would rob his followers of personal responsibility and independent thought. Finally, this modern-day Jesus would not attract some of the people that worship the old Jesus (like Pat Robertson, lots o’ Republicans and any other douche bags who go around hate-mongering in his name) but he would attract generous, talented, hard-working people…like you Christian people I love and respect.
I close with a friend of mine who expresses these ideas better than I can. Plus the blog post directly below this one is from another friend, Roy Zimmerman, who has his own interpretation of this argument.
Jesus Incognito
By Alison Luterman
(from The Largest Possible Life)
Don’t tell anyone, but I love Jesus.
I love his big dark Jewish eyes, so full of suffering soul,
like an unemployed poet’s, and his thick sensuous Jewish lips,
and his kinky curly hair, just like mine, uncontrollable despite conditioners,
and the way he always argues with everyone
and will go to hell for love.
He’s just like that Buddhist god Avalokiteshvara, the bodhisattva of compassion,
except his name is easier to pronounce.
When you’re in trouble it’s hard to remember to yell for Avalokiteshvara,
but “Oh Jesus!” arises naturally
every time a crazy driver hot-dogs past me on the freeway.
I know I should say the Shema when I’m about to die,
but will I be able to remember Hebrew at a time like that?
I don’t want to die saying “Oh shit!”
I’d like to leave my body consciously, like a Tibetan lama, sitting in full lotus
with my head turned toward where I’ll reincarnate next.
But let’s be realistic: I probably couldn’t meditate enough to become enlightened
in the however-many years I have left.
Jesus seems easier. All you have to do is love everyone.
Well, seems is the key word here.
Sometimes the more you try
to love people, the more you hate them.
Maybe it would be better to try
not to love people, and then watch the love
force its way out of you like grass through cement.
Anything is better than organized religion.
I don’t like the singing in churches — all those hymns in major keys.
I don’t think religion should sound so triumphant.
It should be humble and aware of the basic incurable pathos of the human condition,
and in a minor key and sung in a mysterious ancient language, like Sanskrit or Hebrew.
Is it OK for me to love Jesus but not be Christian?
I could try to open my heart and give away all my possessions.
It’s not that different from being Buddhist, after all, except for a history
of witch burnings, the Inquisition, the subjugation,
rape, and pillage of indigenous peoples all over the world,
not to mention twenty centuries of vicious anti-Semitism. That’s a lot to overlook
to get back to a baby born among animals to a Jewish mother, Miryam.
And what about that other Mary, the sexy one? Jesus, I don’t believe you died a virgin.
I think you needed to taste everything human, to inhabit the whole mess:
blood, shit, flies, regret, envy, why-me.
I owe you and all the other bodhisattvas and sages
and newborn babies a debt of thanks
for agreeing to come back and marry yourselves
to our painful predicament again and again —
and I do thank you, bowing to the infinite directions.
Monday, March 01, 2010
Saturday, February 13, 2010
Valentine's Day, You're Going Down...and not in the good way
On the morning of Thursday, February 14, 1929, St. Valentine's Day, 7 members of Bugs Moran's Gang, were lined up against the rear inside wall of a garage on Chicago's North Side and riddled with machine gun bullets until they looked like human colanders. The hit was executed by members of Al Capone's gang and was called The St. Valentine's Massacre.
Every February 14th, a march occurs in my hometown of Vancouver, British Columbia to protest the large number of women who have been murdered or gone missing in that city.
Valentine's Day is ruefully mentioned by Ophelia in Shakespeare's play, Hamlet, when she says:
To-morrow is Saint Valentine's day,
All in the morning betime,
And I a maid at your window,
To be your Valentine.
And we all know how well that relationship worked out.
It gets worse.
I grew up in a time before schools mandated that every student receive a Valentine or else no students were to receive one. In other words, the little construction paper envelope (or mailbox) taped to my desk and decorated with scraps of wool and bits of glitter affixed with Elmer's glue (which, by the way, is the tastiest of all the glues) was a little thinner than the envelopes overflowing with gushing homemade lace doily trimmed hearts, chocolates and those heart-shaped cookies with the pink icing and sprinkles. I learned pretty early that some people got lots of Valentines and me not so many... and that this pattern would repeat itself in various aspects of my life over and over and over again until I got a blog. Thus began my strong dislike for Valentine's Day.
But it's not the years of disappointment that irk me, it's the lack of imagination. It seems somehow cold to have one day a year be mandated as the day on which to be romantic. I hate the uniformity of it. I hated getting the same stupid shit year after year when it meant nothing to me. It made me feel like the person giving me the Valentine knew nothing about me, like they were looking at me, but couldn't really see me.
My house is filled with flowers. I fucking love flowers. My favorite is the Gerber Daisy. It's a brilliant color and the bloom is so big and heavy that it tips over like somebody whose brain is so big their body can't support their head. It's the Stephen Hawking of flowers. I also love the brilliant oranges and yellows of the Gerber Daisy and how, after one or two days, they wilt and sag and you need to cut the stem off and turn them into "floaters." I have special crystal bowls that are only used to float flower heads. People buy me flowers all the time and since I started hospice, my house looks like a hippie funeral home. I mention all this so that there's no mistake. I love flowers. I have always hated it though when the men in my life didn't give me shit all year round, and then brought me a dozen red roses on Valentine's Day. It's so trite and boring. I did, however, once date a guy who used to show up at every date with a single flower. Sometimes, a white rose, sometimes a red one, and he actually had the good sense to ask me what flowers were my favorites. I remember one date in which he said, "Whoops. I have to run back to the car. I forgot your flower" as though it were the price of admission to dateland with Carla. I really appreciated that about him.
Let's talk chocolate. Valentine's Day is the one day of the year that people think you want to eat really shitty chocolates instead of the great bittersweet free trade 85% Dark chocolate that you can get all year round. All of a sudden, just because it's February 14th, you get these shitty chocolates that splooge caramel cum into your mouth when you bite them, completely masking the taste of the chocolate despite your best attempt to try to find the one or two fucking pieces with nuts in the middle. I have to tear each chocolate in half searching for the one or two edible ones and leaving a countertop that looks like a battlefield after shock and awe warfare between the cherries and the nougats. And I'm supposed to be excited about this because these cardboard flavored confections came in a box shaped like a heart? Hello! That's not even the shape of a heart. This is the shape of heart:
And while we're at it, here's the Oxford English Dictionary definition:
heart: noun 1 a hollow muscular organ that pumps the blood through the circulatory system by rhythmic contraction and dilation. 2 the central, innermost, or vital part: the heart of the city. 3 a person’s feeling of or capacity for love or compassion. 4 mood or feeling: a change of heart. 5 courage or enthusiasm. 6 a symbolic representation of a heart with two equal curves meeting at a point at the bottom and a cusp at the top. 7 (hearts) one of the four suits in a pack of playing cards, denoted by a red symbol of a heart.
You will note that it is not 'til the 6th (2nd to last) definition that the shape people refer to as heart shaped is even mentioned. And that's from the Oxford English dictionary bitches.
Now, if someone were to give me a box of chocolates shaped like this:
I would sleep with them right then and there. No questions asked. You see, it's that kind thinking outside the heart-shaped box that turns me on.
And what about the history of Valentine's Day besides the murders and massacres I've already mentioned?
There were at least three martyrs named Valentine, so no one knows exactly which one St. Valentine's Day is named for, but it's widely agreed that the holiday was not connected to romantic love until the time of Geoffrey Chaucer. As much as Valentine's Day wrecked my school years, Chaucer fucked them up even harder with The (fucking) Canterbury Tales. I honestly felt like we were forced to read The Canterbury Tales as punishment because our English teacher secretly hated us. The book is impossible to understand in its irritating old English. For example, here is some Chaucer:
For this was on seynt Volantynys day Whan euery bryd comyth there to chese his make.
Do you have any idea what the hell that means? Me neither. Something about birds making cheese on Valentine's Day, which is utterly illogical since birds, to my knowledge, do not make cheese. If this is a clever allusion to birdshit, I'm missing it completely.
One popular theory is that Valentine's Day was named after a priest name Valentine during the rein of Roman Emperor Claudius II. Claudius had an edict preventing men from marrying. Sound familiar? Only in this case, they were prevented from marrying women since Claudius thought single men made better soldiers. Take that, Don't Ask Don't Tell.
Anyhow, Valentine secretly married men to their sweethearts in direct defiance of the Emperor. It sounds really romantic, but if you've been married, you might see things a little differently. If I were Claudius, I would make an army of men and women who'd been married to each other a long time since the front line would feel like a nice break from all the fighting.
Based on all the sordid tales I have shared with you, I am suggesting a mass international postponement of Valentine's Day in which each individual agrees to reschedule it to a day on which they feel romantic toward their partner. We can replace Valentine's Day with Have-an-Original-Thought Day. As for romantic day, pick a day or days and give your partner something they would actually like--like sex or shoes or, if they insist, a dozen red roses and See's Candies in a box shaped like two equal curves meeting at a point at the bottom and a cusp at the top.
Every February 14th, a march occurs in my hometown of Vancouver, British Columbia to protest the large number of women who have been murdered or gone missing in that city.
Valentine's Day is ruefully mentioned by Ophelia in Shakespeare's play, Hamlet, when she says:
To-morrow is Saint Valentine's day,
All in the morning betime,
And I a maid at your window,
To be your Valentine.
And we all know how well that relationship worked out.
It gets worse.
I grew up in a time before schools mandated that every student receive a Valentine or else no students were to receive one. In other words, the little construction paper envelope (or mailbox) taped to my desk and decorated with scraps of wool and bits of glitter affixed with Elmer's glue (which, by the way, is the tastiest of all the glues) was a little thinner than the envelopes overflowing with gushing homemade lace doily trimmed hearts, chocolates and those heart-shaped cookies with the pink icing and sprinkles. I learned pretty early that some people got lots of Valentines and me not so many... and that this pattern would repeat itself in various aspects of my life over and over and over again until I got a blog. Thus began my strong dislike for Valentine's Day.
But it's not the years of disappointment that irk me, it's the lack of imagination. It seems somehow cold to have one day a year be mandated as the day on which to be romantic. I hate the uniformity of it. I hated getting the same stupid shit year after year when it meant nothing to me. It made me feel like the person giving me the Valentine knew nothing about me, like they were looking at me, but couldn't really see me.
My house is filled with flowers. I fucking love flowers. My favorite is the Gerber Daisy. It's a brilliant color and the bloom is so big and heavy that it tips over like somebody whose brain is so big their body can't support their head. It's the Stephen Hawking of flowers. I also love the brilliant oranges and yellows of the Gerber Daisy and how, after one or two days, they wilt and sag and you need to cut the stem off and turn them into "floaters." I have special crystal bowls that are only used to float flower heads. People buy me flowers all the time and since I started hospice, my house looks like a hippie funeral home. I mention all this so that there's no mistake. I love flowers. I have always hated it though when the men in my life didn't give me shit all year round, and then brought me a dozen red roses on Valentine's Day. It's so trite and boring. I did, however, once date a guy who used to show up at every date with a single flower. Sometimes, a white rose, sometimes a red one, and he actually had the good sense to ask me what flowers were my favorites. I remember one date in which he said, "Whoops. I have to run back to the car. I forgot your flower" as though it were the price of admission to dateland with Carla. I really appreciated that about him.
Let's talk chocolate. Valentine's Day is the one day of the year that people think you want to eat really shitty chocolates instead of the great bittersweet free trade 85% Dark chocolate that you can get all year round. All of a sudden, just because it's February 14th, you get these shitty chocolates that splooge caramel cum into your mouth when you bite them, completely masking the taste of the chocolate despite your best attempt to try to find the one or two fucking pieces with nuts in the middle. I have to tear each chocolate in half searching for the one or two edible ones and leaving a countertop that looks like a battlefield after shock and awe warfare between the cherries and the nougats. And I'm supposed to be excited about this because these cardboard flavored confections came in a box shaped like a heart? Hello! That's not even the shape of a heart. This is the shape of heart:
And while we're at it, here's the Oxford English Dictionary definition:
heart: noun 1 a hollow muscular organ that pumps the blood through the circulatory system by rhythmic contraction and dilation. 2 the central, innermost, or vital part: the heart of the city. 3 a person’s feeling of or capacity for love or compassion. 4 mood or feeling: a change of heart. 5 courage or enthusiasm. 6 a symbolic representation of a heart with two equal curves meeting at a point at the bottom and a cusp at the top. 7 (hearts) one of the four suits in a pack of playing cards, denoted by a red symbol of a heart.
You will note that it is not 'til the 6th (2nd to last) definition that the shape people refer to as heart shaped is even mentioned. And that's from the Oxford English dictionary bitches.
Now, if someone were to give me a box of chocolates shaped like this:
I would sleep with them right then and there. No questions asked. You see, it's that kind thinking outside the heart-shaped box that turns me on.
And what about the history of Valentine's Day besides the murders and massacres I've already mentioned?
There were at least three martyrs named Valentine, so no one knows exactly which one St. Valentine's Day is named for, but it's widely agreed that the holiday was not connected to romantic love until the time of Geoffrey Chaucer. As much as Valentine's Day wrecked my school years, Chaucer fucked them up even harder with The (fucking) Canterbury Tales. I honestly felt like we were forced to read The Canterbury Tales as punishment because our English teacher secretly hated us. The book is impossible to understand in its irritating old English. For example, here is some Chaucer:
For this was on seynt Volantynys day Whan euery bryd comyth there to chese his make.
Do you have any idea what the hell that means? Me neither. Something about birds making cheese on Valentine's Day, which is utterly illogical since birds, to my knowledge, do not make cheese. If this is a clever allusion to birdshit, I'm missing it completely.
One popular theory is that Valentine's Day was named after a priest name Valentine during the rein of Roman Emperor Claudius II. Claudius had an edict preventing men from marrying. Sound familiar? Only in this case, they were prevented from marrying women since Claudius thought single men made better soldiers. Take that, Don't Ask Don't Tell.
Anyhow, Valentine secretly married men to their sweethearts in direct defiance of the Emperor. It sounds really romantic, but if you've been married, you might see things a little differently. If I were Claudius, I would make an army of men and women who'd been married to each other a long time since the front line would feel like a nice break from all the fighting.
Based on all the sordid tales I have shared with you, I am suggesting a mass international postponement of Valentine's Day in which each individual agrees to reschedule it to a day on which they feel romantic toward their partner. We can replace Valentine's Day with Have-an-Original-Thought Day. As for romantic day, pick a day or days and give your partner something they would actually like--like sex or shoes or, if they insist, a dozen red roses and See's Candies in a box shaped like two equal curves meeting at a point at the bottom and a cusp at the top.
Thursday, February 11, 2010
Things I'm Missing Tonight
1. Being able to mime the rapid one handed jerking off motion that indicates to a person that you somehow disapprove of what they are saying
2. Being able to put my hand flat in front of me for an ironic high five
3. Rolling over
4. Owning the destiny of my own chin hairs rather than leave my fate to caregivers too young to know the pain of lady whiskers
5. Sex
6. A TV series that I'm obsessed with that I haven't already watched
7. A nice non- thickened Chardonnay
8. Holding a warm cup of coffee or tea with both hands and bringing it up to my cheek while I read in the morning all alone
9. Keeping ass wiping and suppository inserting to myself rather than having to share my shit with the entire world
10. Putting my arms around someone...anyone... and giving them a big strong hug
2. Being able to put my hand flat in front of me for an ironic high five
3. Rolling over
4. Owning the destiny of my own chin hairs rather than leave my fate to caregivers too young to know the pain of lady whiskers
5. Sex
6. A TV series that I'm obsessed with that I haven't already watched
7. A nice non- thickened Chardonnay
8. Holding a warm cup of coffee or tea with both hands and bringing it up to my cheek while I read in the morning all alone
9. Keeping ass wiping and suppository inserting to myself rather than having to share my shit with the entire world
10. Putting my arms around someone...anyone... and giving them a big strong hug
Thursday, February 04, 2010
It's depressing as fuck because it's true.
There are a lot of ways to suffer on this planet. Haiti, cancer, health care, ALS. As long as there are humans in the world, there will be suffering. However, if you’re inclined to support a cause and you haven’t picked one yet, this blog is intended to help you understand what it’s like to be trapped in a body that has ALS.
It begins innocently enough. First, a strange tremor, then, an unaccountably violent fall. A shoulder that won’t heal, then a hand. The kind of panic that you feel in those early months is as palpable as the panic you will later feel when you have lost control of everything. You are told you have ALS. The average person lives 2-5 years with the disease. But that’s the easy part.
When you have ALS, you begin your post-graduate study in the discipline of losing things. You lose muscle in your hands and ankles so you drop things and trip a lot. It’s almost comical. Pretty soon, you lose the ability to button a button, or to cut something with a pair of scissors and then, to pick up a fork, spoon or pen. Your typing devolves until you peck the words one letter at a time. Then you get someone to type for you. This goes well, until eventually, no one can understand you so they don’t know what to type. You lose muscles in your hands and ankles. You have to wear braces and sensible shoes. It doesn’t seem like that big of a deal, but now, you fall all the time. You break bones. They don’t heal. You begin with a cane and then your friend paints a walker leopard-skin, but before you can make friends with the walker, you fall backwards twice onto the back of your head. Now you’re in a wheelchair full-time.
It’s okay though. Your friend reminds you that now that you can’t lift your hands over your head to put on your sports bra, you can go back to the lacey sexy ones that hook in the back that you love. You threw all your sexy bras out when you couldn’t hook them yourself and so you get to buy a bunch of new ones. Mostly red. When you lament being stuck in a wheelchair, you friend reminds you that you can un-retire your sexy Fuck Me pumps. You give away the sensible shoes. You teach people how to do your hair and make-up. You buy orthotic devices so you can feed yourself. You live a normal life, but you happen to be in a wheelchair.
You lose sleep. At first, your problems are self-inflicted. You lie awake, wondering about death, loss and when and how it will all happen. Later, you lose sleep because your blanket falls off you and you aren’t strong enough to lift it back up or you swallow too much air with your breathing machine and get nauseous and burpy. Or maybe you accidentally roll on your back and you can’t roll back to your side. It’s too hard to breathe when you’re lying on your back.
You’re tired a lot. This seems like the cruelest loss of all. Each nap represents hours that can’t be returned. Hours that you’re running out of. There’s too much to say and too much to do, yet you feel like someone has placed a pile of bricks on your chest. You try to read a story aloud to your little niece and nephew and have to give up halfway through the picture book. You go out for lunch and you feel like you spent the day at Six Flags in the blazing sun. You can summon up enough air to be loud enough to be heard or you can articulate clearly, but you can’t do both at the same time.
You get tired eating. Chewing is an effort and swallowing has to be done with full and complete attention on the task. Choking might kill you. You eat fattening and irresistible food because you have decided you will not get a feeding tube, so you want to keep up your caloric intake at all costs. Sometimes, you choke on saliva. You breathe so much of it down your esophagus that you gag and throw up the saliva. Then, you find a great medication do deal with the saliva, but it dries you out so much that you have cracks in the corners of your mouth that make it painful to smile or to open wide. If you’re too dry, it’s hard to talk. If you have too much saliva, it’s hard to talk. If you’re tired, it’s hard to talk. It gets to a point where all you want to do is get lost in stories or music or poetry.
You start getting pressure sores. You cramp up painfully. Your legs tremor out of control. It’s the leg tremors that wake you up early in the morning. Your legs shake so much it’s hard for people to get you out of bed in the morning and onto the toilet because they have no stable pivot point. Your feet think they belong to Donald O’Connor and your legs are identical to Ray Bolger’s in The Wizard of Oz.
You are 100% dependent on other people. You begin needing a helper first thing in the morning for dressing and showers and last thing in the evening for the reverse. Then you need someone to cook for you, to do your make-up, and pretty soon you can’t cook or serve food. When you can no longer use the toilet by yourself or bring your hand to your mouth to eat or lift a glass of water to drink you need full-time care. This is not only challenging to your privacy, but it’s impossible to afford on a long-term basis. With caregiver bills and other related expenses in the 12,000-15,000 a month area you face the sad fact that there is an up-side to the fact that you are dying, which is that you can’t really afford to live much longer anyway. You are never alone except when you are in bed and a feeling of dread comes over you when you wonder what will happen if you get trapped under the covers and can’t reach the bell for help. Even if someone was interested in a romantic relationship with you, you would never be alone to have one anyway.
Your life is 180 degrees away from where you thought it would be at this point. Everything that you thought you couldn’t live without, you have had to let go of. Everything you will lose in the future will take you further and further away from the larger world. You feel like you are on a snowdrift riding a brisk current away from the mainland.
You make fledgling efforts to communicate. You try to stay sassy on Facebook. You laugh a lot. You say “Goodbye” to people from out of town and you don’t know if you are saying “Goodbye” or “Goodbye.” You do this with your son and it is almost but not quite unbearable.
You are being dismantled piece by piece like a newspaper chain. You watch in slow motion as everything is lost. You play and you replay the videos and recordings of the old you and you recognize her in a very full way that you don’t recognize in recent videos, which makes you think, “Who is that woman with such jerky, awkward gestures? And what is she saying? I can’t understand the way she slurs her words. Oh, my bad - it’s me.”
You know how life can knock the wind out of you so suddenly and you envy the innocence of the rest of the people around you who don’t realize that just like you they could die at any moment. You want people to know how hard it is, but you don’t want them to feel sorry for you or to think you’re brave or to give you the Olympic Gold Medal for Suffering. You want people to see how easy it would be for them to wake up one morning and decide to give up their self-inflicted pain and enjoy their wonderful life. How easy it is to have a great day when you can make and eat you own toast, throw on your own clothes, go out into the world and do whatever you damn well feel like.
You want people to live all the life you’re going to miss.
It begins innocently enough. First, a strange tremor, then, an unaccountably violent fall. A shoulder that won’t heal, then a hand. The kind of panic that you feel in those early months is as palpable as the panic you will later feel when you have lost control of everything. You are told you have ALS. The average person lives 2-5 years with the disease. But that’s the easy part.
When you have ALS, you begin your post-graduate study in the discipline of losing things. You lose muscle in your hands and ankles so you drop things and trip a lot. It’s almost comical. Pretty soon, you lose the ability to button a button, or to cut something with a pair of scissors and then, to pick up a fork, spoon or pen. Your typing devolves until you peck the words one letter at a time. Then you get someone to type for you. This goes well, until eventually, no one can understand you so they don’t know what to type. You lose muscles in your hands and ankles. You have to wear braces and sensible shoes. It doesn’t seem like that big of a deal, but now, you fall all the time. You break bones. They don’t heal. You begin with a cane and then your friend paints a walker leopard-skin, but before you can make friends with the walker, you fall backwards twice onto the back of your head. Now you’re in a wheelchair full-time.
It’s okay though. Your friend reminds you that now that you can’t lift your hands over your head to put on your sports bra, you can go back to the lacey sexy ones that hook in the back that you love. You threw all your sexy bras out when you couldn’t hook them yourself and so you get to buy a bunch of new ones. Mostly red. When you lament being stuck in a wheelchair, you friend reminds you that you can un-retire your sexy Fuck Me pumps. You give away the sensible shoes. You teach people how to do your hair and make-up. You buy orthotic devices so you can feed yourself. You live a normal life, but you happen to be in a wheelchair.
You lose sleep. At first, your problems are self-inflicted. You lie awake, wondering about death, loss and when and how it will all happen. Later, you lose sleep because your blanket falls off you and you aren’t strong enough to lift it back up or you swallow too much air with your breathing machine and get nauseous and burpy. Or maybe you accidentally roll on your back and you can’t roll back to your side. It’s too hard to breathe when you’re lying on your back.
You’re tired a lot. This seems like the cruelest loss of all. Each nap represents hours that can’t be returned. Hours that you’re running out of. There’s too much to say and too much to do, yet you feel like someone has placed a pile of bricks on your chest. You try to read a story aloud to your little niece and nephew and have to give up halfway through the picture book. You go out for lunch and you feel like you spent the day at Six Flags in the blazing sun. You can summon up enough air to be loud enough to be heard or you can articulate clearly, but you can’t do both at the same time.
You get tired eating. Chewing is an effort and swallowing has to be done with full and complete attention on the task. Choking might kill you. You eat fattening and irresistible food because you have decided you will not get a feeding tube, so you want to keep up your caloric intake at all costs. Sometimes, you choke on saliva. You breathe so much of it down your esophagus that you gag and throw up the saliva. Then, you find a great medication do deal with the saliva, but it dries you out so much that you have cracks in the corners of your mouth that make it painful to smile or to open wide. If you’re too dry, it’s hard to talk. If you have too much saliva, it’s hard to talk. If you’re tired, it’s hard to talk. It gets to a point where all you want to do is get lost in stories or music or poetry.
You start getting pressure sores. You cramp up painfully. Your legs tremor out of control. It’s the leg tremors that wake you up early in the morning. Your legs shake so much it’s hard for people to get you out of bed in the morning and onto the toilet because they have no stable pivot point. Your feet think they belong to Donald O’Connor and your legs are identical to Ray Bolger’s in The Wizard of Oz.
You are 100% dependent on other people. You begin needing a helper first thing in the morning for dressing and showers and last thing in the evening for the reverse. Then you need someone to cook for you, to do your make-up, and pretty soon you can’t cook or serve food. When you can no longer use the toilet by yourself or bring your hand to your mouth to eat or lift a glass of water to drink you need full-time care. This is not only challenging to your privacy, but it’s impossible to afford on a long-term basis. With caregiver bills and other related expenses in the 12,000-15,000 a month area you face the sad fact that there is an up-side to the fact that you are dying, which is that you can’t really afford to live much longer anyway. You are never alone except when you are in bed and a feeling of dread comes over you when you wonder what will happen if you get trapped under the covers and can’t reach the bell for help. Even if someone was interested in a romantic relationship with you, you would never be alone to have one anyway.
Your life is 180 degrees away from where you thought it would be at this point. Everything that you thought you couldn’t live without, you have had to let go of. Everything you will lose in the future will take you further and further away from the larger world. You feel like you are on a snowdrift riding a brisk current away from the mainland.
You make fledgling efforts to communicate. You try to stay sassy on Facebook. You laugh a lot. You say “Goodbye” to people from out of town and you don’t know if you are saying “Goodbye” or “Goodbye.” You do this with your son and it is almost but not quite unbearable.
You are being dismantled piece by piece like a newspaper chain. You watch in slow motion as everything is lost. You play and you replay the videos and recordings of the old you and you recognize her in a very full way that you don’t recognize in recent videos, which makes you think, “Who is that woman with such jerky, awkward gestures? And what is she saying? I can’t understand the way she slurs her words. Oh, my bad - it’s me.”
You know how life can knock the wind out of you so suddenly and you envy the innocence of the rest of the people around you who don’t realize that just like you they could die at any moment. You want people to know how hard it is, but you don’t want them to feel sorry for you or to think you’re brave or to give you the Olympic Gold Medal for Suffering. You want people to see how easy it would be for them to wake up one morning and decide to give up their self-inflicted pain and enjoy their wonderful life. How easy it is to have a great day when you can make and eat you own toast, throw on your own clothes, go out into the world and do whatever you damn well feel like.
You want people to live all the life you’re going to miss.
Monday, February 01, 2010
How's this for a book jacket?
If you know any literary agents or publishers show them this cover and then defy them to not want to make the blog into a book.
Friday, January 29, 2010
Things to Do
If you feel like you don't want to live one more day, a good thing to do is write down every moment that you don't feel that way. Every moment that feels like there's no place else you want to be, but right here. Somehow, it's grounding to have a list. Now I can't write anything down anymore, but I have an excellent memory and people who will write or type for me. So, here's a brief list:
Last night, I was reading an eBook. Wendy came up with the idea of trying to Barnes and Noble's eReader and Louel installed it for me and Bingo! I can finally read again without getting frustrated with malfunctioning technology or fingers. It feels great to be able to get lost in a story again. At a certain point during the evening, Mayra told me she wanted to show me something. She wrapped me up in a coat and took me outside where I tilted the wheelchair back to see the full moon. The two of us just stared at the moon without talking and I thought, "Here's a moment for the list."
My niece and nephew were visiting and I'e gotten to the point where not only can I not play with them, but I can't read a whole book without getting winded. Jason had to take over and at a certain point, Annabel whispered to her mom, "Can you start at the beginning? Because we can't understand Aunty Carla." I was stunned at the generosity of these sweet little souls, who were too kind to just tell me flat-out, "Hey dude. We can't understand you." They just feigned interest in the book and dutifully turned the pages. Finally we came up with a game in which I would raise my wheelchair to its full height (which makes me almost my former glorious 5'8") while the two kids stood on either side of the wheelchair fiercely waving the feathers that I'd given them, which had come from my parrot, Ronald. They waved the feathers up and down, as though they were efforting enough to actually lift my 250-pound chair. It was a delicious moment.
My old band came over this afternoon and played music for me. Imagine having three world-class musicians come and serenade you. In between, we laughed and joked as we always do. And then David, the drummer, brought out a chart and he sang "I'm an Old Cowhand." I could barely keep myself from bursting into tears of joy and almost did when Jon Evans joined in on harmony. I can't explain to you how happy it made me to be sitting inside the music again, even if I couldn't participate.
I find that the length of time between list-worthy moments is expanding. It's like I came into the whole ALS thing thinking that it was going to be all shits and giggles when, in fact, there are very few shits--and not very pleasant ones at that--and the giggles almost do me in. I think that the harder it gets to make these lists, the more important it is to make them. The harder it is to get out of bed, to get dressed, to face people, the more important it is to do it.
My son had a rough week and Kathy flew down to San Diego to be with him. I had a rough time on Thursday and my core group of friend-helpers--let's just call them, frielpers... or maybe friere-givers or any other name you can come up with--all showed up throughout the course of the day, some for a half-hour, some for 5 minutes, some bringing food, or a little dog, and some just to give me a hug, Other friends keep in touch by e-mail or phone and I feel that the willingness of everyone in my life--well, not everyone--but the willingness of most people in my life to take a little bit of the weight from me makes it possible for me to get up and re-commit to living for another day.
I watched and listened as my musicians played and I watched as Annabel and Atticus created imaginary worlds with "bad feet" who were the nemesis of the wooden train with which they were playing and "good feet" that would come to the rescue. I looked at the chest of drawers in my caregiver room and saw that the crazy bitches had all given themselves spirit animals to identify their belongings rather than just writing their names down. Jenny didn't make one quick enough so Alexa drew a picture of a goldfish for her with the note, "You snooze, you lose. Now your spirit animal is a sad goldfish in a bowl." I mean, who has caregivers who can come up with that kind of crazy shit? Who has caregivers that are fucking firedancers for God's sake? Who has caregivers that bring gifts, both legal and otherwise, to their employer's house on a regular basis? I watch all this in wonder. I get to be in the center of all this love and creativity.
It's so hard to reconcile the abundance in my life with the equally abundant loss. It's so hard to keep going and yet impossible to imagine missing all this beauty, all these miracles, I am starting to lose something that may be the hardest loss yet. I'm starting to lose the ability to see ALS as a blessing, which has taught me so much and brought me so much. If I lose that ability, I don't know what I'll do. I wish I believed in ghosts because if I were a ghost, I would haunt all of you in a friendly Casper sort of way. I mean, I have enough unresolved issues that are complicated enough that Haley Joel Osmond couldn't figure it out and set me free from my ghost-ness. Fuck you, Bruce Willis. What do you know about suffering? If I were a ghost, I could just stay here forever and sit behind you when you played cards, whispering, "Do you really want to give up that Jack?" or stand next to you at an audition and tell you, "You've as good as gotten this gig already. You're totally gonna nail this." Or I would wrap my arms around you like my sister-in-love did on her visit and whisper, "Oh baby, oh baby, oh baby" until you felt better.
But I don't believe in ghosts or Heaven and mercifully, I don't believe in Hell either, since it would be utterly redundant. I believe in right now. And I need everyone's help to remind me of what needs to go on that list every week.
Last night, I was reading an eBook. Wendy came up with the idea of trying to Barnes and Noble's eReader and Louel installed it for me and Bingo! I can finally read again without getting frustrated with malfunctioning technology or fingers. It feels great to be able to get lost in a story again. At a certain point during the evening, Mayra told me she wanted to show me something. She wrapped me up in a coat and took me outside where I tilted the wheelchair back to see the full moon. The two of us just stared at the moon without talking and I thought, "Here's a moment for the list."
My niece and nephew were visiting and I'e gotten to the point where not only can I not play with them, but I can't read a whole book without getting winded. Jason had to take over and at a certain point, Annabel whispered to her mom, "Can you start at the beginning? Because we can't understand Aunty Carla." I was stunned at the generosity of these sweet little souls, who were too kind to just tell me flat-out, "Hey dude. We can't understand you." They just feigned interest in the book and dutifully turned the pages. Finally we came up with a game in which I would raise my wheelchair to its full height (which makes me almost my former glorious 5'8") while the two kids stood on either side of the wheelchair fiercely waving the feathers that I'd given them, which had come from my parrot, Ronald. They waved the feathers up and down, as though they were efforting enough to actually lift my 250-pound chair. It was a delicious moment.
My old band came over this afternoon and played music for me. Imagine having three world-class musicians come and serenade you. In between, we laughed and joked as we always do. And then David, the drummer, brought out a chart and he sang "I'm an Old Cowhand." I could barely keep myself from bursting into tears of joy and almost did when Jon Evans joined in on harmony. I can't explain to you how happy it made me to be sitting inside the music again, even if I couldn't participate.
I find that the length of time between list-worthy moments is expanding. It's like I came into the whole ALS thing thinking that it was going to be all shits and giggles when, in fact, there are very few shits--and not very pleasant ones at that--and the giggles almost do me in. I think that the harder it gets to make these lists, the more important it is to make them. The harder it is to get out of bed, to get dressed, to face people, the more important it is to do it.
My son had a rough week and Kathy flew down to San Diego to be with him. I had a rough time on Thursday and my core group of friend-helpers--let's just call them, frielpers... or maybe friere-givers or any other name you can come up with--all showed up throughout the course of the day, some for a half-hour, some for 5 minutes, some bringing food, or a little dog, and some just to give me a hug, Other friends keep in touch by e-mail or phone and I feel that the willingness of everyone in my life--well, not everyone--but the willingness of most people in my life to take a little bit of the weight from me makes it possible for me to get up and re-commit to living for another day.
I watched and listened as my musicians played and I watched as Annabel and Atticus created imaginary worlds with "bad feet" who were the nemesis of the wooden train with which they were playing and "good feet" that would come to the rescue. I looked at the chest of drawers in my caregiver room and saw that the crazy bitches had all given themselves spirit animals to identify their belongings rather than just writing their names down. Jenny didn't make one quick enough so Alexa drew a picture of a goldfish for her with the note, "You snooze, you lose. Now your spirit animal is a sad goldfish in a bowl." I mean, who has caregivers who can come up with that kind of crazy shit? Who has caregivers that are fucking firedancers for God's sake? Who has caregivers that bring gifts, both legal and otherwise, to their employer's house on a regular basis? I watch all this in wonder. I get to be in the center of all this love and creativity.
It's so hard to reconcile the abundance in my life with the equally abundant loss. It's so hard to keep going and yet impossible to imagine missing all this beauty, all these miracles, I am starting to lose something that may be the hardest loss yet. I'm starting to lose the ability to see ALS as a blessing, which has taught me so much and brought me so much. If I lose that ability, I don't know what I'll do. I wish I believed in ghosts because if I were a ghost, I would haunt all of you in a friendly Casper sort of way. I mean, I have enough unresolved issues that are complicated enough that Haley Joel Osmond couldn't figure it out and set me free from my ghost-ness. Fuck you, Bruce Willis. What do you know about suffering? If I were a ghost, I could just stay here forever and sit behind you when you played cards, whispering, "Do you really want to give up that Jack?" or stand next to you at an audition and tell you, "You've as good as gotten this gig already. You're totally gonna nail this." Or I would wrap my arms around you like my sister-in-love did on her visit and whisper, "Oh baby, oh baby, oh baby" until you felt better.
But I don't believe in ghosts or Heaven and mercifully, I don't believe in Hell either, since it would be utterly redundant. I believe in right now. And I need everyone's help to remind me of what needs to go on that list every week.
Monday, January 25, 2010
Tuesday, January 19, 2010
Highs and Lows
Note: This blog was written and later edited under the influence of drugs. Not necessarily Amy Winehouse level drugs, but enough. If it really is hard to follow, let me know and I'll be scared straight.
In the cartoon strip, Peanuts, Lucy Van Pelt was forever offering to hold the football for Charlie Brown to kick. Each time he would take a run at the old pigskin, Lucy would pull the ball out from under him just before his foot made contact and he would land on his back. Usually, he would say something along the lines of "Good Grief!" This is how I feel about ALS. I'm Charlie Brown forever convincing myself that this time, things are going to go a little easier and every time I get into that state of optimism, Lucy van ALS pulls the fucking football out from under me. Once again, I'm on my back looking up at the sky but at least I get to see the stars.
In my old line of work, the performing arts, conventional wisdom was that in order to make it, you had to have natural talent, an indestructible work ethic, the ability never to give up, and of course, good luck. I did not have the second two and if you'll forgive my immodesty, that is why I'm not famous. Along those same lines, in order to deal with ALS, you have to be born with a talent to turn shit into shit-ade as well as an indomitable will to not fall to pieces just because your body and people you love are falling to pieces around you. It's not that I have this gift to be positive and it's not that I wake up every morning and decide that I will be positive--Its both.
Every week, I hear about another person who has ALS or cancer or who just lost a parent or whose kid is going through one of those nail-biting times that parents pray their kids get through. Every week, I meet someone whose loved one has lost a job, who has a serious medical problem and no health insurance. I'm serious. I meet more people with problems than Joe Biden did on the campaign trail. So many people are dealing with unbelievable challenges. How do we place them in triage order in our minds?
The truth is, I'm blessed with a talent for seeing the best I can in the worst situations and I have the discipline to place--nay, to force-- myself into a place of gratitude probably 5 or 6 days out of 7. That makes me better off than most people... except for this ALS thing that I mentioned in the beginning.
I got out of the hospital with this new lease on life. What that actually means is that after I got out of the hospital, all the great hospice drugs made me feel much better and oddly detached from how potentially fucked up it is to be in hospice in the first place. Avatar on morphine? Come on, you know you want to try it. Nevertheless, there I was, happy as a clam, figuring out the perfect valium/weed/morphine cocktails.
Then this weekend, I got really sick (OK super constipated, happy now?) while Mac was visiting and it was one of those inescapable times when one thinks, "Fuck. I'm not just faking this. I really am dying." It made me so angry to feel so bad while Mac was here. Then I went into a bit of a tailspin emotionally. It's hard to spend time with your kid thinking, "If it could just be like this all the time, I would be okay with it." And then feeling sick and thinking, "Why can't I just hurry up and die already?" It's a curious paradox to desperately want to stay alive and to be here and to share everything this glorious globe has to offer and yet, to feel like it would be such a relief to die.
I know a lot of people with ALS who have gone through so many more physical challenges and indignities than I have, and yet, they are still here, still actively engaged in the world, and if not in the world, at least in Facebook or Farmville. Compared to them, I am a great big pussy.
Someone was wondering aloud to me recently, searching for the metaphor for ALS. Of course there are so many, but among them is a weird and haphazard way we all lose function of different parts of our selves at different times and how we could simultaneously see them coming in super slow-mo and they seem to hit us out of the blue. That metaphor seems to be disequilibrium. Nothing is exactly one thing or another. Not the functioning of your body, not your state of mind, and not your proximity to this existence or any afterlife existence. It's all disequilibrium.
A long time ago, I performed a piece in which I read the book, "The Runaway Bunny" to my son. If you remember the book, it's one of those books like "I Love You Forever" that makes you cry and makes you wonder if crying at a slightly creepy book makes you a bad parent. I know they're great books, but they're also kind of creepy. "The Runaway Bunny" keeps telling his mom all the places that he'll run away and hide from her. She tells him if he hides behind a tree, she'll turn into a tree, etc. The kind of mom that you spend the rest of your life talking to your therapist about.
But I digress.
In the piece I performed that involved "The Runaway Bunny", I told my son who was actually a plastic doll swaddled in a baby blanket, "the day is coming when my kisses won't be enough to ease your pain. You will know pain and I will be powerless to protect you." I had no idea at that time how profoundly I would one day experience those words. I see my son and although he's tall and handsome and much smarter than me, I also see a little boy. I can't help it. And there's this urge to pull him onto my lap and to kiss his cheeks too hard and too many times and whisper into his ear that everything is gonna be alright. However, it's not. And I couldn't pull him on to me if I tried. And he would look ridiculous on my lap. So I am forced to be in that situation every parent finds themself in to some degree or another: That situation where you realize that you can do absolutely nothing to prevent your child from experiencing heartache.
This would probably not be easier if there were other mitigating circumstances, even though in my imagination, it always is. But the reality is if I had a supportive co-parent, I wouldn't think. "Well, I'm dying from this shitty disease, but it's okay because I have this supportive co-parent." What I'm about to say is so awesomely true I'm going to put it in quotes and credit myself because it's that good:
"Life can never get better than it is right now, but it could get a fuck of a lot worse."
-Carla Zilbersmith, January 2010
...which reminds me, for some reason; Mac was thinking of more effective tactical publicity strategies for Al Quaeda and it occurred to me that Allah would have a lot more martyrs if he just didn't offer 73 virgins to his martyrs. What about a combination? Maybe a couple of virgins, several cougars, some stone-cold freaks, bi-curious people, and a few of the S&M folk? Now if I'm a traditional martyr, I gotta figure, I still have quite a number of virgins coming to me (get it? "coming"?) and if I don't chose to partake in the cougars (because I'm stupid), I don't have to. On the other hand, if I'm Allah, I broaden my suicide bomber base to include people of all kinds of sexual proclivities. (I'm not sure why I'm writing this except for I live in hope of offending a wealthy extremist Muslim who will finally put a hit out on me.) It is something that I would look into if I were a terrorist though.
So, Saturday I was so sick that I spent almost the whole day on the toilet and the rest of the day sleeping because I was so exhausted. To say that I have zero privacy is to understate my current situation and I was prodded and poked in a way that none of you would like. Trust me on that. I was in such pain that I actually moaned out loud, which I didn't do in 36 hours of labor with Mac. And at one point, moaning and crying and saying out loud how much I hate my fucking life and how nobody knows how hard it is to be me, I turned into my own stern, internalized parent and said caustically to myself, "You really think you're worse off than someone in Port Au Prince?" and I couldn't help but laugh at how fucked up I am that even in extreme pain, I'm trying to figure out where my suffering is in the food chain of despair. I think I'm pretty high up on the food chain. I'm also high... up here on the food chain which I guess brings me a notch down on the food chain since some people can't even afford good meds. But anyway as I said, I'm pretty hight up there. I can't lift a blanket over me in the middle of the night, I get winded trying to roll over, I'm tired most of the time, I go back and forth between dry cracking mouth with sores and drooling and I go back and forth between constipation and diarrhea which is annoying when you can get on the toilet yourself. Imagine how annoying it is when it involves one or two transfers depending on if I'm in the bed or the wheelchair. Lots and lots of things in my life suck. However, my dad has relocated to take care of me, one call and my friends arrive en masse to help me, I genuinely enjoy my days with caregivers, friends and bird. On my birthday my friends snuck in and decorated the living area of my house with tons of butterflies made out of feathers. I eat my breakfast in an imaginary butterfly sanctuary. I have a really great boom box in my room that lets me fall asleep to the best music in the world. I have everything material I can possibly need and I always have. I mean, I can't imagine one Haitian dude on that whole island desperately searching for a door jam in his already ramshackle shack and saying in a shaky voice, "Well, at least I don't have ALS." There is always someone worse off than you which for some reason reminds me of the time I got skunked and I went to the grocery store to buy tomato juice and a homeless guy to whom I frequently contributed was in line next to me and he looked at me and said, "Damn, you stink."
The hospice chaplain visited the other day and left me by reciting a poem by Raymond Carver:
LATE FRAGMENT
And did you get what
you wanted from this life, even so?
I did.
And what did you want?
To call myself beloved, to feel myself
beloved on the earth.
So I think, if you don't mind, I'm going to keep taking a run at that football because one of these days, I'm bound to kick it... no pun intended.
In the cartoon strip, Peanuts, Lucy Van Pelt was forever offering to hold the football for Charlie Brown to kick. Each time he would take a run at the old pigskin, Lucy would pull the ball out from under him just before his foot made contact and he would land on his back. Usually, he would say something along the lines of "Good Grief!" This is how I feel about ALS. I'm Charlie Brown forever convincing myself that this time, things are going to go a little easier and every time I get into that state of optimism, Lucy van ALS pulls the fucking football out from under me. Once again, I'm on my back looking up at the sky but at least I get to see the stars.
In my old line of work, the performing arts, conventional wisdom was that in order to make it, you had to have natural talent, an indestructible work ethic, the ability never to give up, and of course, good luck. I did not have the second two and if you'll forgive my immodesty, that is why I'm not famous. Along those same lines, in order to deal with ALS, you have to be born with a talent to turn shit into shit-ade as well as an indomitable will to not fall to pieces just because your body and people you love are falling to pieces around you. It's not that I have this gift to be positive and it's not that I wake up every morning and decide that I will be positive--Its both.
Every week, I hear about another person who has ALS or cancer or who just lost a parent or whose kid is going through one of those nail-biting times that parents pray their kids get through. Every week, I meet someone whose loved one has lost a job, who has a serious medical problem and no health insurance. I'm serious. I meet more people with problems than Joe Biden did on the campaign trail. So many people are dealing with unbelievable challenges. How do we place them in triage order in our minds?
The truth is, I'm blessed with a talent for seeing the best I can in the worst situations and I have the discipline to place--nay, to force-- myself into a place of gratitude probably 5 or 6 days out of 7. That makes me better off than most people... except for this ALS thing that I mentioned in the beginning.
I got out of the hospital with this new lease on life. What that actually means is that after I got out of the hospital, all the great hospice drugs made me feel much better and oddly detached from how potentially fucked up it is to be in hospice in the first place. Avatar on morphine? Come on, you know you want to try it. Nevertheless, there I was, happy as a clam, figuring out the perfect valium/weed/morphine cocktails.
Then this weekend, I got really sick (OK super constipated, happy now?) while Mac was visiting and it was one of those inescapable times when one thinks, "Fuck. I'm not just faking this. I really am dying." It made me so angry to feel so bad while Mac was here. Then I went into a bit of a tailspin emotionally. It's hard to spend time with your kid thinking, "If it could just be like this all the time, I would be okay with it." And then feeling sick and thinking, "Why can't I just hurry up and die already?" It's a curious paradox to desperately want to stay alive and to be here and to share everything this glorious globe has to offer and yet, to feel like it would be such a relief to die.
I know a lot of people with ALS who have gone through so many more physical challenges and indignities than I have, and yet, they are still here, still actively engaged in the world, and if not in the world, at least in Facebook or Farmville. Compared to them, I am a great big pussy.
Someone was wondering aloud to me recently, searching for the metaphor for ALS. Of course there are so many, but among them is a weird and haphazard way we all lose function of different parts of our selves at different times and how we could simultaneously see them coming in super slow-mo and they seem to hit us out of the blue. That metaphor seems to be disequilibrium. Nothing is exactly one thing or another. Not the functioning of your body, not your state of mind, and not your proximity to this existence or any afterlife existence. It's all disequilibrium.
A long time ago, I performed a piece in which I read the book, "The Runaway Bunny" to my son. If you remember the book, it's one of those books like "I Love You Forever" that makes you cry and makes you wonder if crying at a slightly creepy book makes you a bad parent. I know they're great books, but they're also kind of creepy. "The Runaway Bunny" keeps telling his mom all the places that he'll run away and hide from her. She tells him if he hides behind a tree, she'll turn into a tree, etc. The kind of mom that you spend the rest of your life talking to your therapist about.
But I digress.
In the piece I performed that involved "The Runaway Bunny", I told my son who was actually a plastic doll swaddled in a baby blanket, "the day is coming when my kisses won't be enough to ease your pain. You will know pain and I will be powerless to protect you." I had no idea at that time how profoundly I would one day experience those words. I see my son and although he's tall and handsome and much smarter than me, I also see a little boy. I can't help it. And there's this urge to pull him onto my lap and to kiss his cheeks too hard and too many times and whisper into his ear that everything is gonna be alright. However, it's not. And I couldn't pull him on to me if I tried. And he would look ridiculous on my lap. So I am forced to be in that situation every parent finds themself in to some degree or another: That situation where you realize that you can do absolutely nothing to prevent your child from experiencing heartache.
This would probably not be easier if there were other mitigating circumstances, even though in my imagination, it always is. But the reality is if I had a supportive co-parent, I wouldn't think. "Well, I'm dying from this shitty disease, but it's okay because I have this supportive co-parent." What I'm about to say is so awesomely true I'm going to put it in quotes and credit myself because it's that good:
"Life can never get better than it is right now, but it could get a fuck of a lot worse."
-Carla Zilbersmith, January 2010
...which reminds me, for some reason; Mac was thinking of more effective tactical publicity strategies for Al Quaeda and it occurred to me that Allah would have a lot more martyrs if he just didn't offer 73 virgins to his martyrs. What about a combination? Maybe a couple of virgins, several cougars, some stone-cold freaks, bi-curious people, and a few of the S&M folk? Now if I'm a traditional martyr, I gotta figure, I still have quite a number of virgins coming to me (get it? "coming"?) and if I don't chose to partake in the cougars (because I'm stupid), I don't have to. On the other hand, if I'm Allah, I broaden my suicide bomber base to include people of all kinds of sexual proclivities. (I'm not sure why I'm writing this except for I live in hope of offending a wealthy extremist Muslim who will finally put a hit out on me.) It is something that I would look into if I were a terrorist though.
So, Saturday I was so sick that I spent almost the whole day on the toilet and the rest of the day sleeping because I was so exhausted. To say that I have zero privacy is to understate my current situation and I was prodded and poked in a way that none of you would like. Trust me on that. I was in such pain that I actually moaned out loud, which I didn't do in 36 hours of labor with Mac. And at one point, moaning and crying and saying out loud how much I hate my fucking life and how nobody knows how hard it is to be me, I turned into my own stern, internalized parent and said caustically to myself, "You really think you're worse off than someone in Port Au Prince?" and I couldn't help but laugh at how fucked up I am that even in extreme pain, I'm trying to figure out where my suffering is in the food chain of despair. I think I'm pretty high up on the food chain. I'm also high... up here on the food chain which I guess brings me a notch down on the food chain since some people can't even afford good meds. But anyway as I said, I'm pretty hight up there. I can't lift a blanket over me in the middle of the night, I get winded trying to roll over, I'm tired most of the time, I go back and forth between dry cracking mouth with sores and drooling and I go back and forth between constipation and diarrhea which is annoying when you can get on the toilet yourself. Imagine how annoying it is when it involves one or two transfers depending on if I'm in the bed or the wheelchair. Lots and lots of things in my life suck. However, my dad has relocated to take care of me, one call and my friends arrive en masse to help me, I genuinely enjoy my days with caregivers, friends and bird. On my birthday my friends snuck in and decorated the living area of my house with tons of butterflies made out of feathers. I eat my breakfast in an imaginary butterfly sanctuary. I have a really great boom box in my room that lets me fall asleep to the best music in the world. I have everything material I can possibly need and I always have. I mean, I can't imagine one Haitian dude on that whole island desperately searching for a door jam in his already ramshackle shack and saying in a shaky voice, "Well, at least I don't have ALS." There is always someone worse off than you which for some reason reminds me of the time I got skunked and I went to the grocery store to buy tomato juice and a homeless guy to whom I frequently contributed was in line next to me and he looked at me and said, "Damn, you stink."
The hospice chaplain visited the other day and left me by reciting a poem by Raymond Carver:
LATE FRAGMENT
And did you get what
you wanted from this life, even so?
I did.
And what did you want?
To call myself beloved, to feel myself
beloved on the earth.
So I think, if you don't mind, I'm going to keep taking a run at that football because one of these days, I'm bound to kick it... no pun intended.
Saturday, January 09, 2010
Interesting article by a brilliant man
http://www.guardian.co.uk/theguardian/2010/jan/09/tony-judt-motor-neurone-disease
Wednesday, January 06, 2010
Like our blogs are holding hands
I read about Jason's New Year’s resolution on his blog. He resolved "... to turn every moment of my life into a song of praise." He closed the blog with this quote from Hafiz which I'd like to steal and just lie to people and say I wrote it:
“It is all just a love contest. And I never lose.”
On December 26 I marked the 2nd anniversary of my diagnosis of ALS. The night before the diagnosis Mac, my dad and I had gone to my favorite Burmese restaurant in San Francisco. My Dad opened his fortune cookie that night and read out to us the words "You will have very good luck in the near future." He carefully put the fortune into his wallet and said "I'm going to hang onto this one". The following morning Edith, my Dad and I sat in a room while a neurologist told me I had this fatal and incurable disease. I know my Dad said things after the doctor left us alone and I imagine one of them was that he loved me, however the first thing that I remember him saying is " I'm throwing away that fucking fortune."
Call me crazy but that's the restaurant I wanted to go back to on this weird anniversary. So there we were again, Mac regailing us with more information on the health care plan than I could understand in a normal-length lifetime while my dad fed me.
Afterwards, my Dad dropped Mac and me off near Union Square where we braved the rain and the outrageous herd of humanity out looking for a good bargain. At one point we got separated in Macy's. Mac had my cell phone as well as his own. I was the proverbial lost kid. A gentleman helped me out by calling Mac and telling him where to find me and I was really glad for cell phones because it would have been really humiliating to have some loud speaker say "We have a red-headed woman in a wheelchair at the customer service desk. She's wearing a black coat and is looking for her son. If you have a lost parent, please come to customer service to claim her." Plus, if someone gave me a fucking lollipop I wouldn't be able to hold it.
So there we are beating our way through the throngs and the rain has soaked me right through and I can't think of a more opposite anniversary than last year with all my friends in a circle at the beach holding candles. But there I was in the BART with my favorite person on the planet and we're looking through the car and there is this man with his two kids and they are getting on his nerves, I can tell. He's answering them but he's not listening at all. He wants them to shut up. And then there is this couple not speaking to each other staring straight ahead kind of dull-eyed. A young guy is listening to some music and someone else is texting and I say to Mac "look at that guy. He doesn't even know what he has to lose, yet he's one thin hair away from losing it all. Or one moment away from falling in love with his kids all over again. None of these people know that they are balancing on the head of a pin and this might be one of their last best moments." Mac nodded either in agreement or to stop me from lecturing and asked if I needed more morphine, but it was an amazing moment. Soaking wet after an irritating day which marked a huge event in my life and yet.....
being with Mac that day I felt so alive and so real and so true and so lucky that enough bad things have happened to me that I know what I have. I know that a boring BART ride at the end of a crazy day can be miraculous and wonderful.
Sometimes when I read my brother's blog I get the same feeling that I got on that train. It's this feeling that awe and wonder are all around us waiting patiently for us to look up from what we are doing and say "Oh look -- you're here. I didn't see you come in."
Hafiz and Jason are right. It really is all a love contest.
And I never lose.
“It is all just a love contest. And I never lose.”
On December 26 I marked the 2nd anniversary of my diagnosis of ALS. The night before the diagnosis Mac, my dad and I had gone to my favorite Burmese restaurant in San Francisco. My Dad opened his fortune cookie that night and read out to us the words "You will have very good luck in the near future." He carefully put the fortune into his wallet and said "I'm going to hang onto this one". The following morning Edith, my Dad and I sat in a room while a neurologist told me I had this fatal and incurable disease. I know my Dad said things after the doctor left us alone and I imagine one of them was that he loved me, however the first thing that I remember him saying is " I'm throwing away that fucking fortune."
Call me crazy but that's the restaurant I wanted to go back to on this weird anniversary. So there we were again, Mac regailing us with more information on the health care plan than I could understand in a normal-length lifetime while my dad fed me.
Afterwards, my Dad dropped Mac and me off near Union Square where we braved the rain and the outrageous herd of humanity out looking for a good bargain. At one point we got separated in Macy's. Mac had my cell phone as well as his own. I was the proverbial lost kid. A gentleman helped me out by calling Mac and telling him where to find me and I was really glad for cell phones because it would have been really humiliating to have some loud speaker say "We have a red-headed woman in a wheelchair at the customer service desk. She's wearing a black coat and is looking for her son. If you have a lost parent, please come to customer service to claim her." Plus, if someone gave me a fucking lollipop I wouldn't be able to hold it.
So there we are beating our way through the throngs and the rain has soaked me right through and I can't think of a more opposite anniversary than last year with all my friends in a circle at the beach holding candles. But there I was in the BART with my favorite person on the planet and we're looking through the car and there is this man with his two kids and they are getting on his nerves, I can tell. He's answering them but he's not listening at all. He wants them to shut up. And then there is this couple not speaking to each other staring straight ahead kind of dull-eyed. A young guy is listening to some music and someone else is texting and I say to Mac "look at that guy. He doesn't even know what he has to lose, yet he's one thin hair away from losing it all. Or one moment away from falling in love with his kids all over again. None of these people know that they are balancing on the head of a pin and this might be one of their last best moments." Mac nodded either in agreement or to stop me from lecturing and asked if I needed more morphine, but it was an amazing moment. Soaking wet after an irritating day which marked a huge event in my life and yet.....
being with Mac that day I felt so alive and so real and so true and so lucky that enough bad things have happened to me that I know what I have. I know that a boring BART ride at the end of a crazy day can be miraculous and wonderful.
Sometimes when I read my brother's blog I get the same feeling that I got on that train. It's this feeling that awe and wonder are all around us waiting patiently for us to look up from what we are doing and say "Oh look -- you're here. I didn't see you come in."
Hafiz and Jason are right. It really is all a love contest.
And I never lose.
Sunday, January 03, 2010
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