I think I owe everyone an apology. No one needs to listen to the raw whiny voice of someone feeling sorry for himself, because he thinks life isn’t fair. Unfortunately, I asked you to put up with as much last week. Not that I don’t think I should share, but the reactions from so many of you were a tipoff that you thought I had lost my collective senses, that perhaps ALS had finally taken its measure of me, that I couldn’t take it anymore. I want you to know that this opportunity to share, to interact, to bring you a hint of understanding the process that loss creates, is my privilege. That this privilege is framed by dis ease requires a certain care in how and what and when I tell you. So much for grace in the face of dis ease! Let’s pretend the posting from last week was a mistaken draft, a cathartic dump I could have kept to myself. Instead, let’s take an underlying message, a message I have chosen to call “Learning to bike again,” and use it to move into a better place.
Understand, I know I am not able to bike anymore, but I enjoyed biking so much when I was able-bodied, that to use it as a metaphor gives me great pleasure. With the numerous losses in my physical abilities, I missed last week’s opportunity to place them in the moment, to find the place where they just the next challenge, and not life defined. Rubbing salt in this proverbial wound, on Friday, the losses that I told you about were reaffirmed at the Berman Center in my monthly drug-trial checkup. Qualitative data isn’t good enough with ALS; each month at Berman gives me a number to place on the loss. Dammit! But biking, biking is the metaphor, the memory, the methodology back to that sweet spot.
Choose an activity you really love—hiking, singing, painting, running, cards—something that challenges you to accept the pleasant with the unpleasant, the good with the bad. As each one of us carries our own dis ease, that activity can come to symbolize the way of the dis ease we carry, and more importantly the learning we bring to its handling. I choose biking. When I was younger, I could bike miles and miles with very little specialized equipment and hardly any planning. As I grew older, I found biking to be far more enjoyable as I invested in bike clothing, bike tools, and of course two good bikes—one for the road and one for commuting. Biking taught me that cunning and good technology could make up for losses in musculature and oxygen metabolization. Biking taught me that even though I noticed slight losses in my physical capacity over time, I was able to compensate for these losses with different technology, different preparation, different repair techniques. It isn’t so different now with dis ease. As in biking, I recognize the necessity of staying in front of the needs as they present themselves at the speed of ALS.
I must learn to ride a bike all over again.
This new space recreates old space—where eating and drinking are planned activities, the technology of the wheelchair is essential to basic bodily functions, a microphone is good for a crowd or a noisy car, driving is for others, and Ev swings my legs into bed. In terms of biking, it is only learning to ride again, finding the balance over a new frame, getting used to new shifters, testing different brakes and especially, knowing I will have to learn biking over and over. Don’t be afraid.
In the fear inspired by ALS, I fear I have not acknowledged the dis ease that each one of us carries. I fear I have diminished the humanness I have been so privileged to witness with so many of you. I fear I have forgotten to acknowledge the parallels of ALS and the human condition. I fear I have been less of a friend than I should have been. In the fear is the whining. The aging process with ALS moves quickly, far more quickly than the old normal existence I assumed for me and now for each of you. Such assumption is not fair. So many of you have been kind enough to share your own dis ease moments, underscoring similarities based in the increasing complexity of living with these bodies as we age.
I want you to know I am sorry for not listening. In learning to ride the bike again, there is a center shared in the moment it happens and epiphanies abound.
Six weeks ago I stopped driving – I mustn’t live there. Four weeks ago I upped my home care – I mustn’t live there. Two weeks ago I had to ask that certain foods be cut into bite-size pieces for me – I mustn’t live there. I sleep more – I mustn’t live there. I use a lift for showering – I mustn’t live there. I can only stand for a few seconds – I mustn’t live there.
Tomorrow will bring another loss – I will not live there. Next week will bring new grief – I will not live there. In mere months, work will overwhelm desire – I will not live there. Future loss screams consistently about future loss – I will not live there.
Now comes the moment of the quiet center.
The quiet center is learning to bike again. Each time my balance on two wheels is compromised, a new opportunity to change riding technique arises. If I stay right here on my bike it doesn’t scare me. Instead, it looks like fun, a new challenge, a new hill to push through, a new distance to attain. The quiet center reflects the discipline of the moment, neither where I used to live nor where my future lies. It is adding a new gear to my derailleur, losing weight from my wheels, adding carbon or titanium or steel to the frame, switching out the drivetrain. It is riding in the rain, the cold, the heat, the humidity. The quiet center is this body as it is – not what it was, not what it will be – unable, yet still able.
The quiet center is the privilege of connection—to reach and be reached, to support and be supported, to give and take.
Dis ease has taught me to have faith even when faith seems silly. Last evening, with my sisters-in-law, brother-in-law, niece, nephew, son and (God I hope) daughter-in-law, Ev and I enjoyed good food, good conversation, family and family and family. My son David grilled beautifully, and all of us loved the eating. I think you can have faith in such times. I believe it’s indicative of the faith that makes life so spiritual. It is just getting back on the bike after a terrific fall, and finishing the stage.
Yea, though I roll through the valley of death…
So again, accept my apology and don’t worry too much. I’m still too old to rock ‘n roll and too young to die, and somehow or another, I will get my leg over this new bike, given by the grace of ALS, teaching me over and over again that training wheels are unnecessary and balance is just a state of being.