Tuesday, August 25, 2009

Vegas, Baby, Vegas!

How is it that I have never been to Vegas? It's said that Salvador Dali spent some time here, but I have to think he was a city planner, because Vegas is…..well…. Dali-esque. Las Vegas is a wheelchair rider's dream. Instead of weaving through a sea of crotches as I so often do, I was a minor character from "WALL*E," just gliding through the conspicuous consumption with the battalion of wheelchairs around me going every which way. Vegas is a triumph of the imagination over good taste and in terms of fantasy it out-Disneys Disney. There is the Statue of Liberty, thrusting somewhat incongruously out of the concrete and evoking the last scene of Planet of the Apes, a castle with a drawbridge…where you go to see strippers…and of course leopard skin as far as the eye can see. I think I love this crazy town more than Frank and Sammy did.

I went to Vegas with my dear high school friend Renee. I had told her that one of my regrets was never having seen the Grand Canyon, so she booked a helicopter tour and off we went to Vegas and over the amazing Grand Canyon.

But I'm getting ahead of myself. First, we went to see the Thunder from Down Under, an Australian strip show. I've never gone to a strip show before. I did hire a stripper for Wendy's baby shower when she had Tessa. He wore a diaper. It was great. But I haven't actually been to a club before. I had asked a friend…let’s just call him Bob….what I could bring back for him from Vegas, and he asked for a sweaty jockstrap from a male stripper. Now, my friends know that you don't just make that request of me and not expect to receive a sweaty jockstrap from a male stripper. Of course I'm going to do everything in my power to get it. Tragically, these strippers don't show penis. They just strip TO their jockstraps. And they don't sell souvenir jockstraps, which wouldn't be sweaty anyway. So I had to use my considerable charm and persuasive talents to leave the club with a sweaty jockstrap belonging to a beautiful Australian man named Donovan. I even got a lap dance thrown in. So all in all, I would say it was a good night. As far as the details go, what happens in Vegas stays in Vegas. Except of course for the jockstrap, which is now safely in the hands of its new owner.

If that scene didn’t take your breath away, let me tell you about the helicopter ride. If you've watched any episodes of "M*A*S*H," you know that helicopters aren't easy vehicles to get in and out of even when you're able-bodied. When you're in a wheelchair it's sheer insanity to even attempt it. So we did. And somehow Renee was able to get me up (sans army stretcher) in the cockpit (again) and then wheel the wheelchair back to a secure undisclosed location.

So, the Canyon, the Canyon. I don't know if there are poems about the Grand Canyon, but whether there are or not, I know I don't have the words to describe the scope, the magnitude, the awe-inspiring depth of that place. It blew my mind completely. The tour was comprised of Renee, myself and a bunch of Germans, so the narration was all in German with kind of bizarre music choices like "Home on the Range" and Top Gun’s "Highway to the Danger Zone" or, in German, Spitzenpistole mit Gefahrenzone. There's something about the German language that makes everything sound at once very serious and very funny. Likewise the music of Wagner (which was oddly omitted).

But the tour caught me by surprise at the end when during our descent, the corny soundtrack ended with Louis Armstrong singing "What a Wonderful World." It felt like, even in this tacky city with this Teutonic soundtrack, the world was conspiring to remind us all how lucky we are. How lucky I am, to get to have an experience like that, and to have friends like Renee and my friends Gord and Kim who pitched in financially to make the trip possible.

You know, there were so many trips I have taken in my life where I was surrounded by awe-inspiring moments and missed them, because I wanted the experience to be even more magical than it was. And I never got it. It wasn't that I'd picked the wrong spot or come at the wrong time. It was me looking in the wrong place for the wrong thing instead of looking at what was right in front of me. I'm really grateful that Renee would take all this time to fulfill a wish of an old friend. I'm really grateful that Gord and Kim would want to help her make that happen. And I'm also really grateful that I've learned over the years to stop, to rave, to look, to listen, and to see how very beautiful almost everything is.

As a dancer I was never Michael Jackson, but what do you expect? Those white guys can really dance. But what I lacked in precision, I made up for in enthusiasm. Often at an event, I would be the last person on the dance floor. One cast party I pulled a muscle in my neck, I was dancing with such enthusiasm. Now I’m in a wheelchair, and I’m still not Michael Jackson, but I’m pretty sure that I would beat the hell out of Christopher Reeve in a dance competition (especially now).

So last night I went to a fundraising event for ALS TDI, which was organized by the Reich family. I mentioned Corey Reich in the blog, Young Soldiers, from a couple of months back. They’re just the loveliest family you could imagine, and they’re getting close to the $1,000,000 mark for ALS fundraising.

It was a moving night. Corey was there, and a young lady named Megan, who is 25 and has familial ALS. I was just struck by what a grounded, composed, graceful, lovely young woman she was. Her mother had dealt with the death of her husband, and now the imminent death of her daughter. I can’t even imagine what it’s like for women like Linda, or like Wendy Reich, who have to endure this relentless assault on their babies.

As I was beginning to fade, Wendy said, “Come on! Come and dance!” So I said, “OK, but only if you come dance with me.” We danced to Prince singing “Kiss” and to the B-52’s “Love Shack,” and I was kind of thunderstruck. This woman, whose beautiful, beautiful young boy is not much older than my own son, and me, dancing. Life goes on. Joy goes on. Exuberance goes on in the face of the absolute worst thing you can imagine, like losing your child, or like losing every piece of you, bit by bit.

When Renee and I were in Vegas, the airline broke my motorized wheelchair. We made it to the hotel with Renee struggling with both of our bags while trying to push a wheelchair that was not intended to be pushed. We checked in. We stayed calm. Then the bellhop Sam said, “We have motorized wheelchairs here that you can rent.” And I started to cry, because I realized that moving forward in a chair is my last act of independence. I cannot feed myself. I cannot dress myself. I cannot get in and out of bed or onto the toilet by myself. But I can move in a chair, and the relief that that was not going to be taken away from me for the weekend was so great that I couldn’t stop the tears.

Even though I have so little left that I can do for myself, I feel like I need to get out there, put on my high heels and my little black dress, dance, laugh, and joke. I’m not the person with a tireless commitment to raising millions of dollars. I’m not like Mary Harrington, who, after her diagnosis, made several trips to New Orleans on relief missions. I am a joker and an entertainer, and a person that can find fun in almost anything. And it’s really important to me to show people that you can have fun and have this disease. But, it’s kind of humbling to pick joking as your contribution to the world when you’re surrounded by people who humble you with their endless capacity for giving.

I sat there at the table with my two nurses, Dallas and Bob, watched their eyes get moist on several occasions, and heard Bob talk about looking at the video and seeing a bunch of his patients all together outside the clinic and how that felt. And it dawned on me, that they don’t have any objective distance from us. They are risking having those difficult feelings, because they want to be fully engaged in the world, and that can be a painful thing. They are heroes. Not just them, but everybody at my clinic. And also Megan, and Corey, and Johnny, and all the people I’ve met with ALS, and all the family members and caregivers who have endured the loss of someone to this fucking disease. They amaze me.

I think about Warren Schiffer, who stayed by his wife’s side, stretched her for as much as two hours a day, took care of all of her needs, moved into the nursing home with her, took time off work and gave everything, because he wanted to. He wanted to be there with her. I think about his wife, who has since died, and her determination, along with his, to raise money for ALS research. And how someone far more advanced in her illness than me, along with her husband, would create a fundraising arm that would eventually raise almost $8,000,000. And I think about the fact that, after enduring a devastating loss, his impulse is to reach out to help other people. Like me.

If there is anything that I’ve learned from having this disease, it’s that people are capable of enormous good when put to the test. I have met people that blow my mind and only a few people have I encountered through this journey that have been dickwads. When I imagine the hearts of Warren, or the Reichs, or Megan and her mom, or a lot of the other great people I’ve met it’s like flying over the Grand Canyon and being awed by the depth and the scope.

Thursday, August 20, 2009

Award-winning Blog

Please check out my baby brother's award-winning blog at www.beliefnet.com. He has FINALLY given me the green light to share it with you. I will link him to this site soon. He is brilliant!!!

Tuesday, August 11, 2009

Universal Health Care Is Gonna Kill My Grandma!

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.