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:
And did you get what
you wanted from this life, even so?
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.