There is so much to write, and I have really wanted to do so but for some reason, in the past few weeks, my writing energy has been intermittent at best. There is a part of me that says it is because I am not disciplined enough, that I need to get my head back into the game. But another part of me wonders if it is a subtle manifestation of the progression of ALS. I cannot deny that it gets harder and harder to do things that used to be very easy—not from the motivational point of view, but more from the physical energy required. I would guess that both my sense of discipline and my dis ease progression are true reasons, but even truer is the synergy of emotion and realization and just plain old exhaustion that comes with an anniversary. For that is where I am. One year ago, I was reborn and immediately baptized with the holy gifts of ALS. I don’t know about you, but anniversaries always cause me to reflect, and this one, spiraling into so many other things—marriage and loss of loved ones, physical transitions of bodily loss, a construction loan to build the last place I will live, the physical paraphernalia of dis ability—I don’t want to sound maudlin, but this anniversary is significant.
So how does one mark the anniversary of something like the day of dis ease diagnosis? You can imagine the swirl. It is truly an out of body experience. One year later, I still hover over the moment of truth, visually aware of the tendrils of clues curling their way from my memories to that neurologist’s office. I see the walk when Ev said my gait sounded funny, the day I stopped riding a bike to work, the evening I fell at Heart of the Beast, the fall in New Orleans, and–exactly one year ago Tuesday–the diagnosis appointment itself. All of these things play over and over in my mind, confusing themselves with my present condition and future fears. I probably shouldn’t even turn my attention this way, but I have always celebrated anniversaries, so why should this one be different?
One of the nagging questions I ask myself is about the role that naming took in my progression. I asked Ev if she thought I suddenly “got worse” once I had a name for my diagnosis. She reminded me that she really took it on the chin when we got the news, almost immediately getting sick and staying that way for the better part of a month. I don’t need to be reminded. She privately worried, spoke fears only to the walls, constructed secretive Google searches matching symptoms with dis ease names, just as I did. Now, there was a name, an identity straight out of the 1930’s, and the emptiness spawned by a neurologist unable to comprehend compassion except as something that might get in the way of a carefully crafted medical identity. Why ask if naming made things worse? It seemed to do so at the time. I felt that with the name ALS, I was suddenly hyper-fatigued, hyper-weak, hyper-vulnerable.
I suppose that implicit in questioning the role of naming in dis ease’s progression is whether the ability to deny actually helped me to hold the symptoms at bay. I wondered if the discipline of holding it together was let loose by the diagnostic pronouncement, breaking down the denial and opening the floodgates of hyper-symptoms. It is a plausible hypothesis, don’t you think? We know the mind can do powerful things. This is the whole basis of the placebo effect. The mind convinces the body to take some measure of betterment, because the betterment is supposed to happen. Sometimes I wonder if my belief that I was just dealing with stress or a pinched nerve had held physical symptoms off. Did they suddenly appear upon my participation in the great naming convention of ALS diagnosis?
These questions have come back to me in the past month, as I have made huge changes in my environment and my equipment necessities. Two weeks ago, I took delivery on a loaner powerchair to evaluate the features I might want when I order my own. Yes, I have graduated from scooter to wheelchair. I use it to take me everywhere, even parking it by my bedside when I sleep. I’ve scraped every door opening in this too narrow apartment as I learn to steer from the back wheels instead of the front, and except for getting past the door of the way too tiny bathroom of our temporary quarters, it takes me everywhere. My wonderful administrative assistant reorganized my workspace so that it is much more open, easily accommodating the pathway and turnaround needs of this vehicle. My brother and sister-in-law helped us by buying our Subaru, allowing us to put enough money down on a used wheelchair van to afford the payments. I’ve learned the not so intuitive van driving techniques associated with hand controls. So, I am really wheelchair dependent now, with all the accompanying implications and inferences. And again, it raises that chicken – egg metaphysical question for me. If I had not acknowledged the need for the chair and actively pursued it, would I need it as much?
To Ev’s credit, when I engage in these bits of circular meta-cognition, she patiently reminds me that there was very little difference in my physical manifestations from before to after the diagnostic moment, that if anything, I probably deny the symptoms far past the time when I should be ahead of them. But I cannot help it. There is this part of me that still wonders if it is all in my head, if I am just imagining this total body breakdown, that I could control it if only my mind was more disciplined. Admit it, isn’t it intriguing to think that we could exercise so much power over our health by just casting out the thoughts of dis ease? Could it be so simple as to agree to fight dis ease by just refusing to name it?
Just in case you are wondering whether I am losing my marbles, there is a major part of me that says, “Horse Pucky!” to such perseveration.
Yesterday, I was offered Heaven is for Real, the book by the father of a little boy who had a near-death experience. While his story is very interesting, I declined the opportunity. Heaven is what it will be, somewhere in the future, and I don’t need the thoughts of an 11 year old to get me there. I have framed wheelchairs and walkers, paralysis and fatigue into the present. It allows me to do my job, love my kids, remain hopelessly head over heels crazy about Ev, and claim the party, so I can cry when I want to. It has refined me, forcing me to see my body as the dross that it is, and focusing on the refiner’s fire that melts away physical capacity so that if I can stay focused, I see purity of light and spirit and human love. Living in this moment is the real discipline, not denial of physical manifestations.
It is the first anniversary of my rebirth into dis ease. Both Ev and I have progressed a great deal since that day. Perhaps you have progressed as well. I am sure that every once in a while, within the narrative of the slow motion, oncoming, speeding train wreck of ALS, you recognize your own dis ease. For that, I both apologize and am thankful. I hope you have come to appreciate your own space and how you might construct it so that dis ease is your teacher, your mentor, and not your enemy. It is kind of a Buddhist thing to do. Breathe in, breathe out, note that you are in this moment and that what was and what will be are rife with regret and fear, hope and joy, but that we are only truly present in the current moment that we live. That is my space, the space I have learned to build in the past 12 months, and I have to admit that it isn’t as bad as I first feared. In the discipline and gift of an ALS present, I smile and cry and kiss and love.
And I’ll bet you do too.
Happy Anniversary Dis Ease! You moved in without invitation, and you acted like you always belonged. You shadow my every waking moment, playing mind games with me, causing me to question my own tenacity. But you have also taught me to live right here and right now, and I cannot thank you enough for this gift. Who needs past regrets and future fears when the lights are always on in the present? It is worth a cake, as long as there is a candle.