Let me begin by putting the facts up front. Life does not get easier. The challenges of youth and young adulthood are only the beginning in comparison to the challenges of aging. And ALS is life’s challenge exponentially expanded. Where the normal life gives us the illusion of plateaus in its march from death to birth to death again, where the aging process is less noticeable until it takes place, where the normal progression gives the illusion of control, ALS grinds all illusion under it’s heel into the gritty ash that our bodies become. It speeds the process so no respite is available, at least it doesn’t seem so. It just gets harder and harder, and there is barely time to catch your breath.
Writing mirrors these facts. I write in my head on Friday night, perhaps a sentence or two on the screen, tired and grieving and vulnerable words worn down by the week that was. Saturday I speak truths of frustration and sadness and guilt and anger with a little humor and happiness thrown in for good measure into a microphone that still needs guidance about what is truth, what is poetry and what is pure conjecture. And if all goes well, Sunday hints at just enough grace to plunge once more into the breach, at just enough strength to handle the living that is harder and harder to undertake. And each month of the last 22 months, each week since I was born again into dis ease, I need Friday night to start earlier and earlier just to find the strength for the next round to come.
I know there is nothing profound in the facts. Dis ease mocks profundity.
I have been working on a project for our alumni magazine about living (and dying) with ALS. We are down to the final details, making sure the facts square up with the story. It requires negotiation and attention, and not surprisingly a little bit of compassion. Negotiations and extra attention are to be expected, but the details themselves are quite instructive, for in those details are the consistent and layered lessons loss teaches. I say consistent, because my experience since ALS’s arrival is little changed. It is almost impossible to deny my primal reactions to the day-to-day normalcy of dis ease’s cost. But the multiple strata of these reactions, the layers, are what make this so complicated. This week, that point was brought home to me over and over again. Dis ease exacerbates the primal scream, and humanness seeks to layer multiple veneers over the reality. But ALS creates the conditions where living is significant meaning much more than I ever thought possible.
I know I shouldn’t be surprised by these lessons in humanness, for their consistency to horrify and delight is always present. At the beginning of my ALS life, I thought, even as I lost more and more physical function, if I remained open and transparent about its progression, there would be a broad comfort level exhibited by all of those who found themselves within my dis ease sphere. In many ways, that has been the case. Friends and loved ones stick with it, stay with me, work with me. And the task is hard, plugging eleven leaks with ten fingers hard. It is hard not to allow concern to leak from the back of your eyes. It is hard not to allow fear to leak from the pit of your stomach. It is hard not to allow grief to leak into your voice. And it is hard for me to remember that concern, fear and grief are not personal, even though on one level it is all absolutely personal.
And personally, I believed my own primal reactions to ALS could be mitigated by my stark honesty about it. Similar to my friends and loves, I thought that openness would make me more comfortable with the physical loss. And like my hopes for my peeps, my hopes for myself have been somewhat realized. But it has been hard for me too. The fact is that my knowledge of how hard it is to hold concern and grief and fear at bay is also prone to leakage, from my eyes, my gut, my voice. And this is absolutely personal.
If I am honest, transparent, liquid in my acknowledgement, openness has not held the bad stuff at bay, but it has allowed me to look it in the face. Even when I strive to deny its presence, ALS is listening, breathing, sucking life, cravenly mocking the grace, the peace of the moment, with the comparisons to the man I was. Even when I lose myself in some beauty, some musical wash, some worthy challenge, the blessing of God, the spiral inward, breath and velvet, consciousness of the unconscious – ALS is just out of sight, of hearing, of feeling, but not out of the way. There is no respite; just slow slippage down the dusty gravelled sluices and wadis of my own personal desert with a hint at the waters to come, though all is sand and dust and uneven footing. There is no getting away from it. It is always with me. I own what is mine, and I own what I project onto others. And I know dis ease’s direction.
Our local ALS Association has a respite program for caregivers, up to 18 hours per month where a caregiver is encouraged to take time for himself, herself, to exercise, pray, read, walk, get away, but not too far. Such a gift born of need for time and space—who would not require such a thing? A gift not for recovery, but for respite—just a little rest to find the strength to come back, to return to the space where the presence of ALS overshadows all things. Greater love has no person than this.
Sometimes, I would give anything for an hour free of ALS shadowing my room, my loves, my friends, the air, the stars.
The facts, dressed in their Joe Friday monotone, are still the facts. Each day, we are given choices. The choices accumulate, their effects bringing focus, the focus sharply delighting, frightening. Denying the facts, the accumulation, the choices, the focus is tempting, but counter productive to the needs of recovery. It is a work in progress that requires progression in the work. The stare ahead, raw stark feeling of Friday gives way to the voice of Saturday to the point on Sunday where it can be revealed and worked and embraced. And Monday can come again to slip into an earlier and earlier Friday, until Friday is no more, and nothing remains but Friday’s ether. The facts are lovingly aligned. To paraphrase Robert Graves, facts are gentle, and I am rashly honest. Yet we continue and love and live, “despite and still.” To choose otherwise would be loss greater than any dis ease we might imagine.
And I can dream of when ALS no longer crowds my space, despite and still, though there is only one path to the fact.