In 17 years, I can probably count on two hands the number of times my son has been unreasonable and I’d probably still have a couple of curled up, useless fingers to spare.
Those of you who are parents or prospective parents of babies, remember this: it sucks to be a baby. You don’t get to go where you want. You don’t get to defecate in any kind of receptacle – you just have to shit or piss in your pants. You sit stuck in a chair, watching people slowly prepare your food. You don’t get to eat when you’re hungry, you don’t get the amount on your spoon that you want, you don’t get to eat at the tempo you want. If your mom or your babysitter or your dad or whoever the fuck is feeding you is distracted, sometimes the fucking spoon doesn’t even make into your mouth. Now you’ve got food all over your cheeks. And whose fault is that? Not yours.
It sucks to be a baby.
If I were a baby, I would be absolutely insane, because my inner monologue would be, “Hurry the fuck up with that food, bitch. How long does it take to puree some squash?” But babies can’t even talk, so all they have left to their devices is to cry, and then we think they’re being unreasonable. Now compound that with the fact that they are so short that all they can see is everybody’s knees. They have to crane their heads up to look at their captors, except when people decide to get right up in their face and ask them stupid questions and they don’t even wait around for the answer.
If you have a baby that you think is being unreasonable I implore you, give me a call, and I can enlighten you on what it’s like from their perspective.
Which brings me to my topic of the day.
Now that I am in the same helplessness class as a baby, I find myself in an awkward situation. I have boundary setting fatigue and request making fatigue, because it’s hard to get people to take a request you made as some sort of global principle and figure out what needs to be done. So I find myself having to ask, every time the toilet paper roll is low, “Will you change the toilet paper roll?” Or, “Can you not get shampoo in my eyes when you wash my hair?” Or, “I don’t eat wheat or dairy.” To compound matters, while I am quite adorable, I’m not quite as adorable as a little baby so I worry that my bitching will get old quickly.
It’s fatiguing to have to give the same information out over and over again. So I find myself in this situation where there are only a small handful of people with whom I can relax and put my guard down, like my close girlfriends who have shifts that they regularly commit to every week to help me out. My other friends, who I love dearly, can’t keep up, not through any fault of their own, but because this disease is so changing and shifting. If you miss a couple of weeks taking care of someone with ALS, then you really can’t keep up with the program. Likewise, it’s challenging with caregivers because, in all but a rare couple of cases, I find that if people haven’t had kids, then they don’t know how to change along with the disease, because they’ve never had to practice that skill. I remember when Mac was a baby that every time I thought I had his routine down he would change it and I would think he was fucking with me but he wasn’t – He was growing up.
My level of anxiety around caregiver issues is increasing as it gets harder to talk. I know pretty soon, I’m going to be like that baby, unable to make demands and unable to articulate what is driving me crazy at any given moment.
Now let me stop and say this does not reflect a change in my attitude about life in general, about my gratitude towards the people in my life, etc., etc. I’m just letting you know that I have a new and deepened understanding about what it’s like to be that baby – crying because there’s something she wants and she cannot effectively communicate to people what that thing is.
Life is not cut and dry. You aren’t either in an untenable situation that you can’t imagine anyone else being able to bear, or in a situation where your circumstances allow you to see what a miracle life is and what a blessing it is just to be alive, sucking oxygen on this gorgeous planet. They both exist for me everyday, albeit the percentage of frustration has definitely increased as the disease has progressed, and why wouldn’t it?
Can you imagine having to ask someone to help you out of bed in the morning? To be forced to meet them at their level of cheeriness, even if you’re headachy, sore, and gasping for breath? To communicate with them, “Now I need the shower water a little hotter. Now a little colder,” and to deal with the fact that half of the time the water is not actually hitting your body? Then imagine your breakfast is served on someone else’s time table, and the coffee is not necessarily as weak or as strong as you like it, the eggs are never cooked quite the way you’d have cooked them if you were doing them yourself, the toast might be a little burned or a little bit underdone, and there’s never going to be the right amount of butter. Unless you micromanage, in which case, halfway through the day, you’re too tired to speak because you’ve shot your wad on breakfast. And you feel like you can’t complain because, by the end of the day, the food is going to be making you choke anyway, and there are only a few meals left, so you really have to enjoy the ones that you’ve got.
Now it’s 11 a.m. and you’ve barely begun your day. Someone joins you in the bathroom when you pee, someone puts you to bed to nap, and there’s ALWAYS somebody around, except on rare, rare occasions. That’s when you need something that you can’t get for yourself and you can’t lift your arm high enough to reach the cupboard, or you don’t have the strength to lift a water bottle and pour a little cup of water that somebody forgot to prepare for you before they left.
It is like running a marathon every day, only it’s 26 miles of good attitude, trying to find a way to set boundaries respectfully so as not to offend people, but strongly enough that people actually respond. Sometimes it’s hard to find the humorous thread in someone’s behavior, rather than succumbing to the lump in your throat you have because people can’t see that leaving something in the middle of the hallway makes it impossible to get from room to room in a wheelchair.
But here’s the kicker: the kicker is that there’s nobody to blame, just this stupid, stupid ALS. Because anybody who didn’t have good intentions towards me is not in my life anymore. The people that are here, whether they are able to take care of me or not, are people who genuinely care about me and who have made great efforts on my behalf. I’m under no illusions in that respect. I know how deeply I am loved, and I know how many sacrifices have been made on my behalf. And I know that there is a tiny minority of my friends who set the bar so astronomically high that Mother Teresa would be, like, “Really? You’ve got to be kidding me. I’m sorry, but I’m not Wendy OK? I’m gonna go back to healing lepers.”
Nonetheless, I am fatigued. I am worn out asking for what I want or accepting things that make me uncomfortable. I handle it the only way I know how, which is to try to distract myself with fun. But even that can feel fraught with peril sometimes.
Nonetheless, here is my solution to what ails me:
I am organizing a fundraiser for ALS research. I am getting 12 ALS patients to pose for a cheesecake calendar that can be sold to raise awareness and make a little bit of green and show people that people like us are just like people like you. I already have several people lined up to pose and wonderful friends who have volunteered to take pictures and to do calendar layout.
I am taking the Fuck Truck camping next weekend with a group of my wonderful friends.
I bought a beach wheelchair. Barbara and her husband took me to the beach yesterday, and I am hoping to get there at least once a week. I think that just breathing the ocean air will be a cure for a lot of what ails me. That and watching the kite boarders.
Some of my friends and I are getting together on Friday nights to watch movies in my backyard projected onto a big screen. We watched “Mystery Men” this week. And the night before, Mac and I sat out in the backyard and watched an episode of “ Rome. ” There is almost nothing I like more than hanging out with Mac and watching something gory and violent.
And speaking of Mac, he leaves September 16, and I will officially be living alone without my buddy. Please, please, please. Don’t write me or call me and tell me you know how I feel, because, unless you have a fatal illness and your actual days with your kid are numbered, you don’t. I’m sure it was sad for you when your kid went off to college, but you probably had a reasonably good expectation of being at his wedding and of hanging out with your grandchildren.
Do I sound bitter? Yeah, I probably do sound bitter today. But I have to listen, on a daily basis, to people who respond to my complaints with, “I know, me too.” If I say, I’m tired, please don’t say, “I know, me too.” I don’t believe you. If you hear me scream out loud and then double over in pain, and say, “I have a cramp,” don’t tell me you know how I feel, you have your period. Trust me, I used to have a period and there is no way that anything that has ever happened in the annals of periods could compare to the cramps that I have.
Wow. I sound like some mean old man today. I guess we’re all entitled to those days, and I guess it’s only fair that I share them with you, since so many of you have this moving but misguided idea of me as some kind of Superwoman on Wheels. It’s your Scooby Doo moment. The mask is off, and I could have gotten away with it too, if it weren’t for you pesky kids and your dog.
Oh, that reminds me. The other way that I am battling despair is I’ve commissioned Nata to paint the van. I love the idea—that gigantic monstrosity being even more of a spectacle, with mudflap girl on wheels, courtesy of Jenny, and any other crazy things I decide to paint on it.
It feels really scary to put so much negativity into one of these blogs especially when today I met a lot of amazing people at the MDA Telethon, including Jason Picetti, whose blog I will link to this one. Jason is younger than me, was diagnosed after me, and he has a gorgeous little baby girl. I’m sure he has his dark moments but he was so positive and upbeat and inspiring. You should read his blog but I caution you that the beautiful way he writes about this wife will make you cry your ass off.
Still I’m going to post the blog without purging it of the complaining… otherwise I won’t be posting this week. (This would be a perfect place to type LOL if I were ever able to bring myself to do so in a non-ironic context. If you are the kind of person that likes text language then you can imagine I said LOL and then you can ROTFLMAO) I get concerned about saying things out loud and giving them more power. I don’t want to give these bad feelings more power than they already have. But at the same time, they’re there no matter what I do.
At least, maybe if I share them with you, you’ll be a little more patient with your baby. Or with someone you love who has ALS or who is elderly or who is just acting like a big baby.
Monday, September 07, 2009
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First...my reaction to your entry was pure LOVE.
For those of us that aren't or can't make sacrifices for you we CAN at the least send you love, and respect for who you are and the life you have led.
It was an honor to be at your last performance...and have your CD...what a beautiful voice both at Yoshi's and on the CD...captured for as long as humans have media and electricity!
I love your idea about a calendar...showing people are people. Might be fun to have an inside secret...put one person in the calendar that doesn't have ALS.
Make it a 13 months calendar...making part of the sales pitch by purchasing this calendar you may be adding "time" to ALS patient's lives.
Your camping trip sounds lovely...where? I am envious of your friends going. I think of you Carla as a YOUNG old wise soul...full of insights, stories, questions AND LOVED BY MANY.
I DON'T KNOW HOW YOU FEEL...but we all KNOW YOU DO FEEL and we respect your feelings.
Carla...as you have reminded us...the BLOG IS YOURS you will do what you damn well please with it...dump you heart and spirit out here. I believe in getting both good and bad energy out these is beneficial to you and the world around you. Getting the bad out can sometimes dilute the pain (sometimes!).
As always love to you and everyone that supports you either physically or spiritually!
p.s. is there a video/audio capture of your Telethone adventure?
Tell it as it is, Carla; tell it as you are. The roundedness is all. Most people, when they write about themselves, self-mythologise, but you don't, and that's the marvellous thing. Be true to your unconquerable incorrigibleness, every last quirk. If ever there were masked moments in your account of your life I don't think we ever fell for them!
Well, I was wondering how you were on the physical level. Underneath all the physical humiliation and anguish your true self just keeps shinning through it all. Your continued gift to us is your conscious participation and explanation of the reality, the truth, you are bearing.
This was a response to a question on my acupuncture e-mail group - I thought of you:
"Illness and symptoms/suffering can be seen as instructions.
To remove them is not the only definition of what healing means. To be free in the face of them is true healing, and that is the liberation of the spirit. At this level, ‘good’ and ‘bad’ continues to happen in the manifest world, the world of ‘time’ but the spirit has direct recognition of and access to the dimension free of time, where the origin of all life is still unmanifest, still completely perfect and still. This is the most true part of any of our own experience, pure consciousness and pure awareness.
In the ‘land of 10,000 things’ or the manifest world, good or bad, yin and yang are inherent. Conflict and friction occur.
The gem is that when one has transcended relativity, and recognized wholeness as the most true part of oneself, you become less identified with your personal experience.
Not to say that in this place it is welcome that chronic illness take root or continue to live, but it doesn’t constrict your relationship to truth."
We are all on our own unique journey. We may have had similar things happen in our lives but none of us will experience them in the same way. This is why I like the quote: Be kind, for everyone you meet is fighting a hard battle. ~Plato
Some battles may be visible outwardly but you never can know that individuals inward struggles.
I don't know how you do this with such Grace. I admire your courage.
If I can ask all the viewers/readers to turn away for just a moment...thank you. F U ALS!!!!! Damn you to Hell. We will NEVER stop fighting you until you are no more. Be gone and leave those we love alone!
Ahem, okay, you can turn around now. Carla, I ♥ you! Big hugs from NY. Love the 13 month idea from Anonymous.
Keep the negatives, it doesn't mean you have to live in them. (As my childhood best friend's mom would say- honor the shadow.)
There is nothing worse than going through something traumatic, going online to find support and experience and only finding chirpy "making lemonade" anecdotes. Like the entire forum is Stepford Wives. I feel like the only person on the planet who's going through it or having a hard time and I KNOW I'm not- I don't have ALS. My traumas come a dime a dozen. And yet...
Also, for me, not saying a thing gives it more power. When it's out there, it just IS, instead of being a big secret that will toxify my environment if I let it out. Nope. It's just a sucky horrible thing and that's all it is.
I hope this doesn't come out as "I know how you feel" because I don't.
I HOPE it comes out as "keep it 3-D because it's amazing and profoundly real that way."
I get so much out of your blog but am not very good at saying so. And I will totally buy your calendar.
Hi Sweet Girl,
You have a blog, a place to let your Muselings know how you are feeling, whether a good day or a bad day. We are with you through it all and love you for your complete honesty. No, we cannot know how you feel sending Mac off to college, I sent three off and, though hard, I knew they would likely leave college with two parents still at home whether they ever came back or not. Mac doesn't have that luxury though I believe you will be here for a long time to come. You have taken on this horrible disease and will hold it at bay for many more years. The fact that you would even consider camping is a small clue into your fighting spirit. Your boy will finish college and return home to where his mother will be waiting for him.
Don't forget to let him know that I am here for him anytime he might need me for meals, laundry, or a good night's sleep.
I have a fly
she's so shy
i don't like to see her cry
but she can't fly
so she has to slide through a pineapple pie.
by Lola, age 6
Love you, E
You go girl, complain all you want. If anyone has a right to, you do. No, I don't know how you feel. I've never had ALS, I've never had a most magnificent son launch into the world. I can't even begin to imagine all your pain, physical and emotional, your frustration, but, the one thing I have never seen in you is despair. I love your courage, your patience, your humor, you.
And, be cranky any time you need to.
It's comforting to see your rage. Seeing the edges helps identify the whole.
I love you. I hope I'm not one who ever said, "I know how you feel, I have cramps too." I'm resisting the urge to go read all my comments. LOL (without irony)
One of the other gems suffering here I met via you is Sarah Ezekiel. Looks like she now has a blog too:
You know, I'm glad you're angry about it. Those of us who knew you 8-12 years ago knew you for the vibrant, talented, beautiful person you are and it's hard for us to face what stupid-ALS is doing to you. The few gatherings I've seen you at over the years, I couldn't approach you because so much has changed over the years and I don't do small-talk very well and I'm angry that ALS struck you.
I don't know what it's like, yet, to have a child leave and go off to college - where is Mac going, by the way? - but as far as facing death, any one of us can die any time. Falling debris from space, for example. But yes, actually knowing and literally counting days down - ugh.
You were such an amazing part of my life, I thank God you were in my life. You'll always be the crazy red-headed Canadian.
I don't feel "sorry" for you, per se, because I think you've mentioned you hate pity. If God would respond to such a selfish question, I'd ask him why you? Like WTF did you ever do? He'd probably respond with "Well, same reason as anything. Luck of the draw." (I dunno. I still blame him.) Stupid ALS. I'd like to wring its neck and choke the life out of it. It's not pity for you, it's anger at ALS. And it hurts me, on some undefinable level, to see you like that. I prefer to think of you from CoM days. (Denial is awesome.)
Next time someone whines about something, just say "At least you're not fucking DYING, bitch." And flip 'em off as best as you can.
We're here and we hear you and it's OK. Keep sharing.
Hi Big Baby,
You sound pretty grown up for a baby. Your blog today made me more conscious of everything...how I talk to people, how I touch people, my attitude, my demeanor-- how it can either soothe or savage... How much I depend on people. How much I appreciate it when I can give someone something that is worth something-- especially something like a smile or a word of encouragement or asking them exactly what they would like or need.
Thanks for waking me up--
Lots of love for you
I could do without the religious song...but what a video...
The title is: My Redeemer Lives - Team Hoyt
BUT WATCH THIS WHAT A FATHER DID WITH HIS SON...very inspirational without the music!
One day, a son asks his dad "Daddy, would you like to run a marathon with me?".
The father says "yes". And they run their first marathon together.
Another time, the son asks his dad again "Daddy, would you like to run a marathon with me?".
The father says "yes son".
Then one day, the son asks his father “Daddy, would you run the Ironman with me?
“The Ironman is the most difficult triathlon ever (4 kms swimming, 180 kms biking, 42 km running).
And the dad says "yes".
carla i don't know you personally but i adore you. reading your blog is so honest, so human, such an exposure to what this devastating disease can do. als has been the single most defining thing in my life, and it didn't happen to me personally but i was one of the few on the other end trying to get the temperature just right, trying to understand the whispers, and wishing i could trade places with my father who i'm sure was feeling all these same things you often feel. it's ok to say it's not fair, its not fair, no human should have to endure this. i am so sorry that this came into your life. i hope you find some peace in what you can...*virtual hug* & a real prayer.
thank you for your blog, its a gift to the community of people living with als, caring for those with als. my family continues to fight everyday to raise $ and every penny goes to als research. we will never never never quit.
thanks Carla for so succinctly telling it like it is...this disease sucks with a capital S...after reading this blog I feel bad for not fully understanding what it feels like from the inside out...this blog should be standard issue for every caregiver, medical professional not to mention family member who has the arduous task of caring for not in the least loving someone with ALS...it gave me great peace to know that my mom was more protesting the disease and not my clumsy acts of "fill in the blank"...you have an amazing spirit....I think of you on this heart wrenching day! Much peace, Maureen
I think this is the third time I've read through this post and there are still too many thoughts and emotions running through me to post a coherent comment other than to say I'M SENDING YOU MY LOVE. --KK
I liked your post. You worried that it was negative but in fact in spite of the complaining it seemed real to me. Here is someone who is writing what it's really like. It's true we really don't know a persons situation until we actually experience it. I don't follow your blog but touch down every now and then. Truthfully I find it hard to read but that's because life is hard and that is what you write about. It's encouraging to me that despite all that you are going through that you still have the will to still find the fun things as much as you can. It's a reminder that all we can do is just try and press on. Eloine
Carla, I want to thank you for putting it out there so honestly. I lost my mom to ALS 30 years ago, and I am still haunted by it. It is the most cruel and devastating disease on the planet. I was the kid leaving for college. I'll never forget the tears and anguished look on my mom's face as she watched me get into my car and drive away. It was the most incredibly heartbreaking moment of my life. As the nearly grown up child leaving home, there were many conflicting feelings.
It‘s been 30 years since my mom died. I was only 22 and she was 46.
While her death haunts me in ways I can't even explain, I have finally reached a peaceful place where I can honor her dying wish for me to "remember the good times" before ALS struck, along with the misery and suffering of that last year. I remember the vibrant, creative, gentle, strong and wise warrior mom as well as the one that I had to lift off of the toilet and help back to bed. What a gift, to be able to remember the good times pre-ALS as well as her incredible courage and strength through the very worst of the ALS dying days.
ALS delivers knock-out punches to the soul. Everything sacred that you once thought you knew about life is turned upside down. I spent years trying to stuff the memories and "live a normal life" -as if those nightmarish ALS days are scenes that lie on the cutting room floor in the really bad B movie of my life. But the memories still haunt...
Thirty years...and still no cure. Thirty years...and still no useful drugs or treatments. How long, oh lord, how long? I've taught myself not to ask that question anymore. I will never understand why bad things happen to good people.
You are not a whiner! You write with honestly about what it’s like to be in your skin. This disease cannot be sugar-coated - it is deadly. People need to know the truth, even those who are too "troubled" by your appearance and are too "busy" to come around.
I want to share another blog with you written by another courageous woman like yourself, someone who writes brilliantly and strives to live life to the fullest up to her last day. Her blogs are gut-wrenchingly honest and don't gloss over anything. She doesn't dwell on every aspect of her illness and suffering, nor does she hide it. Her amazing spirit shines through every single word. At age 30 she is dying of a rare disease, a form of MSA, multi-system atrophy. I have borrowed her courage on my darkest of days, as I would think that many people draw courage from you...even if that was not your intention. I know how awful it is when someone says "oh, you are such an inspiration!" You just want to say, “and YOU are such a sorry little phlegm wad!” That little smile on your face that people mistake for a Mother Teresa – like serenity is a reaction to the delightful image in your head of watching this Pollyanna do-gooder get bound and gagged while being stung by a thousand killer bees.
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