I have stated that writing these weekly reflections is therapeutic. Each week, I re-center myself through these mini-chapters that chronicle my mental and emotional journey around my physical dis ease experience. And you have been so kind to me in your comments, private messages and snail mail cards and letters. In fact, your kindness worries me. I just don’t feel like the guy you tell me I am, especially lately, as it has been getting harder and harder to negotiate the regression of ALS.
For some reason, my physical losses have really focused this week. Walking is almost gone. The muscles in my torso and lower back have lost their strength. And of course, this means that normal things like dressing are harder to accomplish. This week, more than usual, grief and despair have been close to the surface. I came back from a program on Tuesday so exhausted from standing with a handheld mic for a half hour, that I sent out one of the whiniest missals I can recall. I’m not proud of it. It had a quality that could have been interpreted as blaming the world for what has befallen me. Self-pitying, fatigued, and in a voice that sounded like aluminum fingernails on a slate blackboard, I really showed just how small dis ease can make you act. “Wow!! Who was that guy?” It took a morning to kind of patch it up, although everyone knows that once you say something, it cannot be taken back, not completely. It has been a hard week on me, my family, friends and colleagues.
And then there is the preparation of our new place. We are working with an accessibility designer who has learned to be sensitive but matter of fact about such things as lift and transport systems (since everybody knows that you won’t be able to move yourself), and discussions about the finer techniques of toileting for the paralyzed. These conversations are accomplished with care on their part, but nothing is off the agenda (so just get used to it). Of course, each of these conversations, from the layout of the transport to the need for a mattress that will raise you up, to the location of the toilet, the special sink, the roll-in shower, desirability of remote controls for lights and heat and locking the door illustrate how lucky I am. The fact is that we sold our house and are downsizing to a point where we can put these controls into the finish of the condo, and still get a lower mortgage payment. Most of my fellow PALS cannot even begin to put together the resources to help them manage, and if it wasn’t for the ALS Association, they might have nothing to support them (and I know that not all local chapters are as good as our local in Minnesota). Yet, I cannot help but feel resentful that others “know” where I am going in a way that I cannot. I hate the fact that we have to do this. I grieve both inside and out as each accommodation is planned and made, because it says to me, “You are dying. Each plan made is just another step closer to your final reality.”
I warned you this was raw and whiny.
But that is why I write. Therapy for the fingers and the soul, these weekly postings have become for me a cross between aspirational wisdom and physical malady. They help me to acknowledge my dis ease losses, while describing the space that helps get me through them. What I want you to know is that this writing is not the story of some Judeo-Christian Buddhist Saint who can look back on the physical existence of life with no regret. That would be a lie and a misrepresentation. Dis ease is not graceful. I guess I am writing because I value honesty. I don’t want you to think I am something that I am not. I’m just trying to make sense of all the knowledge and experiences that I continue to gain, while at the same time negotiating all the physical functions that I continue to lose. And I want you to know that it isn’t easy, even if I make it sound like it is sometimes. It is damn hard, in spite of the fact I have family and friends and colleagues that have chosen to stand with me in this process. Every once in a while, I just find myself crying at the loss. Every once in a while, I can’t help but shake my fist at God and curse my dis ease and this path I am on. Believe me, I am no saint, and it would be dishonest to pretend to be as much.
So what is the point here? I’m not sure. I certainly don’t want pity. A couple of weeks ago, I went to my primary care physician for the normal yearly check-up (I have ALS, by the way), and having not seen each other since my diagnosis 11 months ago, she came into the room with that “tragic look” on her face. I told her to stop it. I just cannot take the pity. Treat me normally. Her response was to brighten up and say, “Thank you, good to know.” So I know that I am not looking for that. But I also have to say that it doesn’t mean I don’t need empathy either. This is a very complicated space to occupy. I want to be as normal as possible, and want to be treated that way. At the same time, it is impossible not to acknowledge that what is normal for me is about accelerated loss and a shorter lifespan. It is the attempt to reconcile the need for honesty with the need for grace that frames my life.
And sometimes, God help me, I just need the melt down.
The great DJ of the sixties, Wolfman Jack, used to have a line that he would growl into the microphone–“If I’m lyin’, I’m dyin’.” I’m sure he meant it in a way that was supposed to be glib and hip and cool. But there is a weird truth in the contingency. I cannot help but feel that one of the very few things I can keep intact is my honesty. Sometimes it feels like that is all I’ve really got. It is almost like saying that covering up the experience feels like it is hastening my demise. Lyin’ is dyin’.
So forgive me for the corrective today. I will regain the space that has helped me thus far; I have faith in that. But the dis ease that requires faster than a speeding bullet negotiations of every little physical loss, the need to be planful for the eventualities that are almost 100 percent assured, the trying to keep just ahead of the awful creature that is nipping at your ankles, even when you cannot move your ankles, sometimes obscures the space that I know I’ll find again. Sometimes, I just need to let it out, feel sorry for myself, wallow in the anger and self-pity, and then be done with it.
The Wolfman was right. There is death in the dishonesty, and in the end, honesty is all we’ve really got. If I’m dyin’, I shouldn’t be lyin’. Honest.