On the Head of a Pin

Writing would be so much easier if I were Sherlock Holmes. I would describe this whole dis ease experience with the detachment of a forensic researcher, droning on and on about how elementary winding down with ALS is. I would seek out miniscule meanings from the clues I would offer in each and every episode of my life, moving from ultimate human engagement to the need for quiet and peace just to survive the next minute and the next. But I am not Sherlock Holmes.

Instead, I have this enormous need to describe, like an insider with a big and terrible and wonderful secret, just how the story goes. I have this enormous desire to say the real and true (at least according to me) thoughts as they circle and wheel and roll around inside my head. My needs lead to enormous assumptions. I am assuming you will let me know if my governors have come off too far. I am assuming that you will let me know when the insider knowledge is too much for you to bear. I am assuming that you will tell me when you prefer blessed ignorance to the play-by-play with color commentary that inside knowledge encourages. But most of all, I assume that we all like to be in the know, even when the informant is not as smart as Holmes, a seeming reenactor of “Six blind men and the elephant” rather than a deductive genius.

Deduction is not my forte. For me it is a question of balance, and this past week has been one where the question of balance has not only been politely raised, but shoved down my throat.

Questions of balance are not to be taken lightly. For example, the balance between foolhardy and overly cautious could be driving 5 mph over the speed limit. It could be the critical mass one reaches in deciding whether to stay or go in a relationship, or to move away from or remain steadfast in a place of employment. Most of us can point to certain experiences where our life’s stasis was disrupted, where balance became impossible, where it was as if the universe had aligned itself against us. Being homeless or losing your loved one suddenly or being diagnosed with dis ease with only one terminal ending are massively unbalancing to the overarching meaning of day-to-day existence. I used to drive 5 mph over the speed limit.

I have experienced the diagnosis, the disruption of whether to stay or go in both relationship and employment. I have experienced the sudden loss of a loved one. Such experiences require years to rediscover that center, that space where all is well, that head of a pin where the angels dance. The consequences of great disruption are easy to understand. Not so easy to get are the consequences of when the small, trivial, carefully constructed sequences that keep us in an upright space are suddenly thrown far off kilter, not by massive life experience, but by something so exceedingly small that deductive distance begins to look like the only way in which to understand their meaning. In other words, it’s the little things that really get you.

The elevator broke down in my building, and I was not in my third-floor condo at the time.

When you have very little arm extension or hand coordination, 2 inches out of reach might as well be 100 miles. When you have no leg strength, the whole idea of walking becomes fantastical. And when you have no elevator, a 400-pound wheelchair becomes an instrument totally at odds with its mobility purposes. A body that cannot walk or crawl or pull or push becomes stone that refuses to be moved, a Sisyphean feat that embraces the ludicrous, a living example of the overwhelming power of gravity.

Think of poor Ev as she sought to find one or two or three backup plans we could execute. First she called the ALS Association and located a Hoyer lift. With this at least she would be able to take me from my chair to bed and back again. Then she found a hotel that did not require the DNA of our firstborn child to hold an accessible room until 6:00 PM. Then she went online to a support group and asked for advice. And finally she turned to a number of other caregivers who might be able to offer assistance well informed by experience. I am thankful it was summer. Can you imagine such execution with a room full of kindergartners?

It soon became clear that the elevator would not be fixed this day. And as we began to plan for the move into a hotel (I won’t even describe the logistical planning and the amount of equipment in addition to the Hoyer lift required), an idea from one of the caregivers online came through. “Have you considered calling the fire department?”

As we talked, it became more and more evident that getting me into the condo, even if I could not have my powerchair, was most desirable. So, Ev called the fire department. She told them, “I don’t think this is an emergency, but I have no way to get my husband up to the third floor where our condo is. Is there any way you could help me?” The dispatcher on the other end stated, “I don’t know, sounds like an emergency to me.” And within 20 minutes three fire persons – Garrett, Lisa, and Boomer – had figured out how to slip a cloth stretcher underneath me and to carry me up to the third floor. Our lovely neighbors at the other end of the hall loaned me their powerchair for the next 24 hours. And some off-balance balance was achieved.

This took place on Wednesday, and I have to admit that it wasn’t until Saturday that I began to feel like my old self again. The ALS person I have become is so easy to disrupt, so easy to push off balance, so easy to move into painful and difficult spaces, that I hardly recognize him. Yet I know it is me. I know that the energy I expend to create a space that is calm and fulfilling and centered is much more than I realize. The experience of being carried up three flights of stairs speaks of how simply the center can be pushed to the side.

I don’t tell you this for empathy or pity. I tell you this because as cliché as it may sound, dis ease has taught me that change is the one constant on which I can depend. And what I am trying to learn is how in the face of such constant change and loss, joy and life emerge. I know that they do. Many times, even in my ALS normal, I’ve experienced joy in the face of sorrow, gain in the face of loss, constancy in the face of disruption. And yet, I also have experienced just how human and flawed I am. When will I learn that none of this is anything more than the illusion of safety? When will I learn that joy and sorrow, loss and gain, constancy and disruption are nothing more than different sides of the same human experience? When will I learn that balance requires that both the positive and negative must be present?

Sometimes, it takes the overwhelmingly physical teaching of the local fire department to remind you that spiritual space is the counterbalance of physical loss. Sometimes, it takes enormous imbalance, tipping points exponentially reached to again experience the quiet center. Sometimes, it takes dancing on the head of the pin.

It really is elementary.

July 4

July 4

It is July 4th, and in the last two weeks, maybe even in the last seven days, more than one friend has told me I seemed a little “dark.”

And I thought I was hiding it so well.

So I will admit that I have had thunderheads round my eyes, that I have felt less connection, less space, less. I admit that something I knew but couldn’t acknowledge was taking place. I admit that I just wasn’t moving through the harder times, the more challenging times, the situations that were clinging to me with all of the grasping, cloying, olfactory, primal qualities of old smoke in the morning – hard to get rid of once it is on you, yet pleasant in small amounts as memory or flavor. I did not see the same darkness as my friends, but I now realize that the last set of losses, the last paper cuts, have been particularly hard to take.

I always overestimate my readiness for such things.

If you know anything about the physiology of the brain, you know that there is a great deal of motor cortex real estate devoted to the thumb, and I suppose that is why I have been able to keep some thumb function up until this point. There’s just a lot more that needs to be taken down in order for ALS to have its way. But now, my left thumb shakes, and it chooses its own direction in defiance of my desires.  And on my right hand, while my thumb is still somewhat functional, fatigue sets in quickly, so it’s functionality cannot be trusted. Add to that, the fact that my left side is always a little bit ahead, specifically that my left hand keeps informing my right of its future, and you have a recipe for a living Caravaggio* whose loss is less violent, less sudden, but no less significant.

So now here is the reckoning – no arms and no legs, no feet and for all intents and purposes, no hands. In the meantime, my neck grows weaker and and my sleep is inconsistent. I won’t even go into the challenges of ALS logistics. Each small loss must be translated into these larger, taken for granted arenas that most adults plow their way through (except for flossing) without a thought in the world except, “do I look as good as I possibly can.” At night I look up at Ev and sigh, “Sometimes, it sucks to be me.”

I’ve told you many times, I am no saint.

And yet, I cannot help but perceive a certain sense of purpose at work in all of this. It is as if a confluence of universal ethers has come together in a very personal way to teach me another lesson and another and another. My history is one where I stepped up in my youth and learned the skills required to keep a family running, and then I pushed those skills out into my own life. I realize now that many of the failures that I perceive in my first 50 years, were really my inability to translate my need to care into anything but my needs. I didn’t really learn how to care with any modicum of success until about 10 years ago, when I came to understand that human fulfillment is in the ability to translate deep care for all those with whom we cross paths, but in a way that allows such care to be reciprocated.

Please don’t read into this anymore than what was going on in my mind and my heart as I moved through the life that I knew.

Imagine that you have mastered some impossible technique, some skill set, some knowledge base, some attitude to a point where it has become like a second skin. Imagine that you are still approaching the apex of your purpose, your raison d’être, your life wonder, your grand opus, your artistic fulfillment, imagine. And then the universe writes across the sky a secret message that only you can read, “Enough! It is time to learn the real purpose.” Your head would swivel, your thoughts would lose their direction and alignment, and you might even be afraid.

I am afraid.

When my friend and teacher Matt asked me how I was doing, “not physically, but otherwise,” he stated that I seemed to be projecting darker.  I don’t like to characterize mood as dark or light, black or white, or any other arbitrary, colorful categorization. But when he said this, I realized that my grief was more present, more surface, more perceivable. It has not helped to see friends with ALS fulfill their destiny, nor to see brave caregivers in their own grief, and let me be honest, in relief that such a journey does have an ending. If you chose to perseverate on this reality, it could push your soul out of your body. But when Matt made his observation, I also realized that that while deeply challenged, I still do not despair. I have not moved through the latest losses as easily as before, yet I still see myself moving through. While the great lift that comes in the rise of the breath and the flooding of the lungs with blessed spirit has been slower to arrive, I have not lost my faith.

The fact is that none of us is truly finished until the great lessons have been learned. I learned how to push care, even for those who didn’t want it, so that my life was defined in a single dimension. Dis ease has brought me the spherical lesson over and over and over again, that care for requires care of, that caregiving requires caretaking, that caring space is not only physical but deliciously, consciously spiritual. I have faith that I will move through and become even more the person I want to be, the person I need to be. I am not finished; life is not done with me yet.

Today is July fourth, the day that our still very young and fragile and maddeningly frustrating democracy celebrates its own birth. There will be speeches and fireworks and movies and concerts and all manner of patting ourselves on the back. I will not be swept away by the speeches or music (except for Copland’s A Lincoln Portrait), but I cannot help but see the direction we are headed with the hope that at some point, our immaturity will give way to that which holds true meaning – that faith and love have far more significance than avoiding pain and suffering and death. That the remarkably gargantuan resources that we plow into death avoidance could be repurposed into life embracing, refreshingly chilled water awakening us to our possibilities, such simple love that when given, only multiplies and grows. I see this in my sons and daughters-in-law and dear friends and most of all my one true love, Ev.

It isn’t dark at all, and it isn’t light. It is faith in what will be, and the love that will come, and it isn’t as bad as I thought.

*Michael Ondaatje’s thumbless thief in The English Patient.