The other day I was trying to get a straw out of one of those take-out cups with the plastic lids - a task for which I no longer have the grip. I struggled and struggled and felt my throat getting tight because I couldn’t do this simple thing. Finally with a big lump in my throat, I said to Mac tersely “would you please get this out for me?” He very deliberately placed his hand over the straw as though gripping the hilt of a sword and in one deft movement pulled it out of the cup and over his head, and thrust it towards the ceiling as he said in a deep booming voice “Excalibur! I claim this straw in the name of the Britons!” Of course I completely forgot how frustrated I had been a few seconds earlier. Every day my boy cracks me up. He keeps me going. He is Wart and King Arthur – a kid who has been given a task that he didn’t ask for and didn’t believe he was up for but clearly he is.
Mac told me a statistic the other day that made my blood boil. Of those who are among the top one percent in patient expenditures (that would be me) fifty percent have their policies canceled. Meanwhile among those patients on whom the company makes a profit, less than one in a thousand get their policy canceled. I have a modest proposal: we allow that top one percent of people with serious illnesses who drain these companies of their massive profits, to man the firing squad and on the wrong side of the guns, we line up all the people who make these sick choices (get it? sick?) that favor profit over a basic human need. Then we allow those very sick, terminally sick, chronically sick people (not including me because my trigger finger isn’t strong enough) to shoot those creeps in the knee caps and then get up in their faces as they writhe in pain say, “Ouch, it’s a good thing you have comprehensive health care coverage, because that’s got to hurt” I recommend the patients wait awhile before calling the ambulance. What – too much?
You know, honestly, although I hate the health care system in this silly country more than pretty much anything I hate in the world, I’m not sure the U.S. is ready for a single payer system. I know that sounds negative, but I have been on Medicare for under a year and if that is the best the government can do, I got to tell ya, we are in big trouble folks. I pay upwards of $800 a month, which includes my drugs, and I’m on the phone with people whose comprehension (with some rare and very friendly exceptions) is marginal at best and who are generally indifferent to the fact that they are talking to someone with a debilitating and incurable fatal illness. I deal with poorly worded letters that Edith and I (who as she puts it are “college educated and then some”) can barely make sense of. It’s staggering. And there is no accountability. There is no supervisor to complain to. You can’t call the same person back because they are part of this massive clearinghouse. So even though I think my Canadian friends and relatives have their heads in the sand when they complain about their own health care system and that every non-impoverished-third -world country has a better health care system than the U.S., I don’t hold out a lot of hope. I know that sounds negative and I know I’m going to get a lot of hopeful blog comments and I will delight in them - I will. I really do hope I am wrong. Every day I hope that we can have a health care system in this country like every other fucking country but I’m not so sure it’s going to happen folks. 46% of healthcare costs in this country are ALREADY paid by taxpayers and Americans don’t want socialized medicine? That is some special kind of stupid. So while Obama holds Town Hall meetings that look like a scene from Deliverance, people like me end up relying on the generosity of others and lucky for me there are a lot of generous people in my life.
On Friday I picked up my new van, which was totally free! I was on a waiting list through the Muscular Dystrophy Association and sure enough my name came up and a lovely lady whose husband had died of ALS, drove this van from Mount Shasta to Sacramento to deliver it to me. It is a 1986 Ford whose prior sole purpose, I am sure was to be a shag-mobile in which some ardent Van Halen could get laid. It has plush red velveteen seats, a fold out bed in the back, wood paneling and a custom-built shellacked cassette holder. I shit you not. It is like walking into a time machine. Of course I’m going to put that mud flap girl onto the handicap guy’s wheel chair and write on it “If this van is a rockin, don’t come a knockin!” This may somewhat diminish my pool of suburban mom drivers, but it will be worth it.
In addition to the van, the Forbes Norris Clinic is loaning me a wheel chair for my shower and Medicare is paying for the rental of a hospital bed. It has become too difficult for me to negotiate my queen size bed and a little precarious for caregivers to move me from wheelchair to shower bench, hence the durable medical loot. That brings this week’s bounty to approximately $25,000 worth of swag!
I count my self as somebody very blessed despite what I have had to deal with. This week Kaila and I went to Bodega Bay. I don’t think that I have spent any blog time telling you about Kaila. She is a wonderful violinist and composer and the wonderful mother of 10 year-old Lucy. Kaila has organized fundraisers for me, done fundraisers for me, shopped for me, rubbed my feet, cooked for me, dressed me, donated money to me…I can’t really list all the ways she has been an amazing friend to me and now an all-paid vacation as well. The highlight of the trip was the beach she found that lent out dune buggy style wheelchairs. And let me tell you something; I got to get me one of those!!! For the first time in over a year I was all the way down at the water’s edge. And just to be near crashing waves was the most miraculous feeling. I can’t even begin to describe it. The ocean was turquoise blue and the sun was glinting off of it. You could hear seagulls on the rocks jutting out from the water. And then came the waves. Wave number one and two were, from my perspective quite benign, though they did get Kaila’s feet very wet. Wave number three, however, picked the wheelchair all the way up and took it in the direction of the sea. I could feel myself tilting backwards a bit and I realized that we were no longer in control. Before things got too dramatic, a couple of guys came running to our aid and helped Kaila pull me away from the waves. It was quite an ordeal for everyone but me—I was just giddy about being in the water and having myself a little adventure.
On the way back from the hijinx with Kaila, we stopped at the Forbes-Norris Clinic where Mac and I got interviewed for the Jerry Lewis telethon. As you may know, I’m one of Jerry’s kids and Mac is therefore one of Jerry’s grandkids. The producer asked me about my hopes and dreams and I told her I didn’t have any - that my life was great just the way it is. I mean I had just come back from two days at the beach with a treasured friend who piled love on me and took me to the water’s edge. Who needs hopes and dreams? I know she wanted me to say I hoped for a cure for ALS but one day there will be a cure - whether I hope for it or not - and hoping for it won’t make it come any faster. Afterwards I wished that I had said that my hopes and dreams are that my son has the same kind of experience with love and friendship that I have had. I hope that he is on both the giving and the receiving end of the kind of love I’ve experienced . Plus, my hope and dream, as I have mentioned before, is that all the douche bags that have heretofore made decisions about health care will have their knee caps blown out and live in pain in a wheelchair. Isn’t that a beautiful thought? Finally, my hopes and dreams are that all the many amazing people in my life (you know who you are) can fully comprehend this great thing they have been a part of. This web of care and love is astonishing to me and I don’t know if my loved ones realize how special they are, not just to me.
I wouldn’t wish this disease on anyone, but it is really wonderful to have learned through this experience how much goodness there is in the world. I received a correspondence from a man who’s son has ALS and he said it is hard for him to see any silver lining in all of this except for the wonderful people that he had met and I heartily concur. And I have a shameful confession to make. When in the past a good friend has been seriously sick, the help I have given them is a minuscule drop in the bucket compared to the oceans of help that has been given to me. I always had good intentions but I did not do for Edith, Moira, Christina or Stephanie what they have done for me. They along with my other friends have taught me so much about the capacity we all have for doing good in the world. And it’s too late for me to help them back in any physical way, but I can at least tell all of you about the wonderful, wonderful humans that I know. We get tested at times, Moira said to me, and we get to reveal ourselves to ourselves. The people that I love have shown themselves to me and who they are is nothing short of staggering.
And then there’s that boy who can pull a sword from a paper cup, who in the biggest test of his life, shows me every day what courage is.