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.