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.


The Take

My upbringing is particularly Judeo-Christian, so of course I have been taught that is it always better to give than to take. Couple my childhood with the American values of self-reliance and individualism, with plenty of room for my typical male socialization, and you can get a sense of how ALS wrecks what I’ve so carefully bought into from the time I was just a child. I deliberately am using the word take, because it is an active verb. To receive is passive, but I find myself having to deconstruct the old mores in a way that actively seeks out help and support. I’m not just a passive vessel receiving help. Ev and I have come to realize that taking help is vital to our living. And there is good and bad that goes with the taking: There is grace, but getting to grace in the taking requires a certain reconceptualization of the old lessons about giving.

This past weekend, Ev and I have been given the grace of taking. We have to move. I just cannot negotiate 18 stairs to the bedroom and a bathtub that is not walk-in anymore. It is stupid to even try. So, as we are getting the house ready to sell, we are moving into the apartment in the basement, taking us from a big two-story house with three bedrooms to a single level with about 750 square feet. I cannot tell you how much energy I save with this arrangement. But it is a complicated decision, and it means breaking through a lot of denial and grief about loss of physical energy and function. And it means that we need help, because there is no way to pack up the stuff of our lives that needs to be gone, or to move the things from down to up and up to down, by ourselves.

This is where I realize that ease has been interrupted with dis ease. We didn’t come to this place with ease. In our minds, we were going to live in this old house and entertain grandchildren with hide and seek in the stairwells, and fun in the yard. Such ease has to be given over to the realization that dis ease is now upon us. That is the hard part of the taking. And we hold a clarity about these realizations that leaves us raw and on the surface. When old friends showed up to help us pack, I cried. Couldn’t help it. But in these friendships, was the first grace—they knew how hard this was. And in this writing, I am calling them out by name.

A week ago, Laurie, Sophie, and Sharon got us well started with getting the kitchen into boxes. Over the weekend seventeen people came by and packed, carried, deconstructed, reconstructed, and loaded us into our next step in life. Our brother Greg organized the POD, Cecilia and Camille, and Cindy pulled stuff out of closets and cabinets and boxed or organized. Jonathan, Bryan, David, Don broke down and carried out. Teri and Steve—our almost in-laws–packed and boosted us up. One or two would need to leave, only to find one or two showing up. Just as we were thinking, “Well, we’ll have a lot to do tomorrow,” in popped Kristen, Rhonda, and Kelsey to continue packing. Sunday, Don and Ken, Greg and Cindy, and the wonderful Caroline and her boys helped finish it up, so that we are now safely ensconced on one level, and I feel like I am in a safer place.

Usually, I start out these little life lessons with the down-side, and then I finish with the up. This is a little different. It took the gifts of grace, from friends in our house, to point out that the path of ALS strips away what I thought I valued. It isn’t that I cannot or should not still strive to give, but the gifts of friends and family, who would take their busy weekend and offer to help us do what dis ease dictates we cannot do for ourselves, points out that giving and receiving is a false duality. Just as one who knows hunger knows food in a different way, I am getting to know giving by the necessity of taking. The take for me out of all of this, is that we couldn’t come to this place without the necessity that growing disability brings.

I am physically unable to ride this out by myself anymore. Dis ease is like that. It changes what worked for you before, deconstructing the old normal of John Wayne in the saddle—the guy cleaning out the gutters, organizing the major events of our lives, and yes—packing us up for a move. You really have to learn how to take with dis ease, seeking the grace in taking that nobody really mentioned when I was growing up. It is just the physical reality of dis ease.

And I have to say, the giving of others inspires me to follow dis ease’s path wherever it will go…. no matter what it takes.

Yours in ALS,