I’m working on three writing projects – the revision of a book with my friend Ernestine, a paper with my friend Sharon, and of course this blog as the spirit moves me. All three of these projects require consideration of my history in dis ease, trolling through earlier blog postings, journals, and even pictures as I’ve considered the past 2 1/2 years. It has not been easy. Sitting inside any former blog entry is grief for some hidden reference, some thing I was able to do then but cannot do now. Inside every picture is an image of me old normal, even when I thought it was new normal. Inside the book revision is grief for the teaching I can no longer do. Dis ease has taught me that looking to the past brings grief, and that has been my experience, exponentially multiplied as I circled back into the writing, the imagery, the progression, the old me.
Let me give you an example.
A little over two years ago, I blogged about a specific meltdown over clothing. In an entry called “The Fixer,” I described packing for a business trip to Arizona, and of course waiting until the last minute to discover what I already knew–the summer clothing that fit a svelte warm weather old me body was about as relevant to my new ALS corpus as a bicycle for a fish. Frustrated, angry, humiliated, totally off center, you would have thought the issue was a squandered chance at world peace rather than clothing that wouldn’t fit. But the issue was not so much the clothing. Rather it was the inability to bring my old normal skill set of fixing things to bear on my clothing challenges. In essence, I had to face the new normal where fixing didn’t work.
Imagine what it was like to reread this entry. At the time, I was walking, I traveled alone, I could get on a plane, I could go to Arizona, I could drag a 22 inch suitcase behind me, I was still relatively mobile in spite of the fatigue of ALS. As I plumbed the past’s depths, the realization of both my blindness and my prescience washed over me in giant waves of incredulity. I was blind to just how far this thing was going to go, and yet I was clearly anticipating the losses, one by one, paper cut by paper cut, old normal into new normal. You can probably imagine the grief as I read about this person bemoaning his condition, even though he could walk and travel and work and you can probably imagine the grief as I compared what he could do then to what I can do now.
Pictures are even worse.
We are putting together a bike team to raise money for ALS TDI, an ALS research group with a four-star Charity Navigator rating. My son Jon is building the website and innocently, he asked me for some biking pictures. Nothing I can think of ambushes me more than looking at pictures of Ev and me on a bike ride. It calls up all of the joy and fun and closeness of two people outdoors putting in the miles and letting life fall off onto the road. And I don’t want to seem idealistic about the memory. There were times when we were both so tired, headwind strong, hills steep, sun hot or rain pelting that we just wanted to quit. But we learned to get through those times with a lot of encouragement, “You can do this, get on my wheel and we’ll do it together.” My memories are about an equal partnership, overcoming physical and spiritual challenges. Flipping through pictures of both of us so fit, so physical, so happy in the privilege of riding together is an invitation to despair at what dis ease is doing.
Circling back is not for the faint of heart.
One more example is worthwhile. Early on as my physical capability waned, I explored my newly acquired disability in a blog I called “The Look.” I discussed the new experience of being ignored, looked through, unseen. Again I am struck by the incredulity with which I wrote. I couldn’t believe I had been so blind until disability was central to my own existence. I couldn’t believe that other people were so blind as well. I couldn’t believe the regret for my old normal knowledge that I carried in my new normal self. I reread “The Look” with quasi-embarrassment for now the topic seems so much more complicated than it did then.
Circling back is complex. It is hard to look at images from the past, frozen in their time, stripped of their context and feeling, and not judge them too harshly with the sharpened understanding of focused hindsight. I was doing the best I could at the time. You would do the same.
I now recognize that circling back is not really what I have been doing. Instead I have been spiraling down, deepening the experience so that what was once “the look” is now vulnerability, what was once “the fixer” purveying easy one time solutions, must now be “the worker” recognizing the irresponsibility of such acts. And in the ultimate spiral, I now flip through images of the effects of dis ease on my family and friends and especially my one true love Ev, and my fears were both well founded and inadequate in anticipation of what was to come.
When we are in the moment, it is easy to believe that we own a full understanding of the situation at hand. What I’ve come to realize is that as I move further and further into the experience of ALS, as my family and friends have their own interpretations and perceptions and epiphanies of these experiences, as physical loss and spiritual gain strive for stasis and balance with each other, I am in a spiral of increasing awareness. What was then the complete package, is now incomplete, requiring further analysis, further negotiation and most importantly the humility to recognize the obvious.
I’m never going to fully get it.
We spend an inordinate amount of time trying to make sense of past failures and successes, attempting to control their effect on the future as if such control was attainable. In circling back, I spiraled down into the person I was, recently diagnosed–still walking and fearing the wheelchair, still breathing and fearing BiPAP, still speaking and fearing eye gaze technology. I am comforted by the futility of such focus. Circling back is walking the very thin line of interpretation and realization, celebration and regret, hope and fear and angst and worry and joy and centeredness. Spiraling down is all in, outside the lines, embracing the contradiction of knowledge and ignorance in a miasma of fixing and working and looking and vulnerability and imagery old and new.
And it offers much deeper meaning than bicycling with a fish.