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.
Tuesday, August 25, 2009
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Bless you Carla for your sheer life force! I have loved reading your blogs and you have set the bar up very high...I live with the 10% hereditary chance of getting this awful disease, as I am one of the Irish sisters' whose mum passed from ALS...Viva Las Vegas! Maureen
Man, you can tie it all together, there is such great continuity in your writing. Yes, you are so right, the beauty and wonder is always in front of us, and we miss it, because we're always in want of more. Thank you for reminding us of the human dilemma. Exceptional blog, and I, who have never been to Vegas either, am now inspired to go, only hoping that what happens there, trully stays there.
As Yoda mights have said..."the spirit is strong in this one!" Your spirit is so magical. I read each word of your blogs with interest. I can see that spirits can be in pain too. I am not so blind as to think a strong spirit stays "up" all the time.
Between the people you know and those that know you via the blog or however else they/we pass by you THERE ARE so many more people than hours in the day that people would be there for you...changing, cleaning, listening, laughing, crying, FEELING with and for you.
Your stories bring tears of joy and sadness. They get us to really be in touch with what it means to be human.
Thank you dear one...I wish the one chance I had to meet you had happened, but at least I can leave you my thoughts here.
Also...would love to give you a lap dance :-).
p.s. Thanks for the gifts of your storytelling.
I am endlessly amazed by both your insights and compassion. Vegas, baby. Joanna
Viva Las Carla, baby! thank you renee, for making this happen! thank you carla for sharing your exploits & insights so, so well! can't wait to laugh with you soon. wen xo
The scope/magnitude/depth of your words had me soaring. Thanks for the amazing view Carla.
Carla, you do realise I'm now wondering how to get myself a sweaty jockstrap! I met Warren on Twitter recently and am amazed by what he's achieving. You may not be raising money but your words are priceless...
So do you recommend Thunder Down Under or not?
Thanks for reminding us about the joy that's out there, whether as great as the Grand Canyon, or as great as a dance, or a joke. My eyes are open again!
:) Karen Larson
One of my old dear friends that passed on was Ed Roberts. He was a respiratory quadriplegic. He was amazing in his life.
I first met him in the sixties. He was in his iron lung and his aid was giving him a joint. I was naive ... I looked at him and said, "aren't you afraid of the police?". He replied..."what are they going to do"...then the machine took another breath for him..."put me in jail?" Boy I laughed thinking of an iron lung in a prison cell.
He started all the "centers for independent living" around the world. The first was in Berkeley. He worked for the state under Jerry Brown...amazing what people with disabilities can do...far more than me :-).
Anyway I thought of him today while thinking of how much you contribute to our lives.
The next gen wheelchair...fyi:
All your blog posts are great, but this one was spectacular. You brought us along with you, into the sweaty loins of the lap-dancer (and inquiring minds want to know; exactly how did you get that jock-strap) to the Grand Canyon, and beyond. What an amazing writer you are! I love you,
there will never be
Your words are inspirational Carla, full of wonderful humor and insight that is beyond words. Your contribution of reminding us of absolute beauty and awe, despite everything, is priceless.
Each time I read your blog I cry with joy and pain. Your spirit is as big as that Grand Canyon of yours and your honesty is liberating many. I have cp (cerebral palsy) and identify with much that you write about... in the line and between the lines.
Thank you for helping me be brave!
Bountiful beautiful love,
For those who want to watch Carla and Mac on the Jerry Lewis telethon, but don't have a T.V. (there are some of us out there)-you can see it on the web-
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