In a couple of days I will be having surgery to replace my infusion port which has become blocked by fibrous tissue. This will be the third port I’ve had implanted near my clavicle to transport the ALS drug Radicava. I am hoping the third time will be charmed. The surgeon and I have become friendly over the last six months or so, as he is the same doctor who put in my feeding tubes (it is standard practice to insert first a J-tube, then a simpler, smaller Mic_Key tube). I joke with him about having provided me with new orifices.
The week before last I had surgery on my back, followed by eye surgery, both procedures unrelated to ALS. The back surgery was to cauterize some nerves in my lower back that had been causing pain, and the corneal eye surgery was to address my long-time astigmatism in preparation for cataract surgery. All of these surgeries have been relatively low-impact outpatient procedures — I’m home by the end of the day; fine, if a bit loopy.
I have come to think of my body as a fixer-upper, its basic structure still sound enough to warrant work that will improve it and contribute to my quality of life. I particularly look forward to the eye surgery, as reading through the scrim of cataracts has become difficult, and my days are largely composed of reading (other people’s work or my own). I am told that the world becomes more colorful after such surgery — I look forward to seeing if this is true for me.
Each time insurance approves one of these procedures, I am somewhat amazed that the medical establishment (including the insurance companies) are allocating their funds and efforts toward me, a person who will be alive only a few more years. Is it wise and economical for them to do so? And what about me — how far will I go in wanting such “improvements” to be made?
Many people say they would never want a feeding tube, but why would I reject such a simple solution for getting nourishment? I am not hooked up to any machine, or confined to a hospital; the tube enables me to feed myself and move around normally; it is simple and easy. Recently, I saw another ALS patient at the infusion center who was in a motorized wheelchair and carried a portable ventilator with her which she was using on and off to help her breathe. When she was done being infused, she hefted the ventilator onto her wheelchair, asked her assistance dog to pick up some things on the floor — which he did very obediently — and she wheeled herself out alone with the dog. She appeared to be completely independent and in charge of her condition and, as I watched her, the thought of having to use a daytime ventilator became somewhat less dreadful.
Down the road from our house there is a wooded property that is home to several decomposing buildings that are moss-covered and collapsing into the earth. These are definitely not fixer-uppers. They are scarcely still recognizable as buildings. You can almost see them sighing as they genuflect in submission to gravity and moisture, lower and lower each year, each month, probably each day. I have wanted to explore them, see what kind of buildings they once were and what kinds of creatures now inhabit them, but it is private property, and I don’t dare trespass. I can’t help but wonder why someone gave up on rescuing them and when they passed the point of no return. Maybe it was too expensive. Maybe they had outlived their purpose.
I have been exercising since I was a kid, first because my family did sports together, and then I continued as an adolescent and into adulthood because I realized exercise was important in maintaining health. I still have a strong belief in the importance of keeping the blood flowing, and I try to walk as much as my energy permits. But, from my impaired perch now, I look at the compulsive exercise so many of us have routinely engaged in, and I am amused by it. What propels us? The notion that we can improve our health, maintain our appearance, live longer. So many studies tell us this is true. We need to fix ourselves. We may not have accepted who those selves are, but we remain focused on fixing them, as if something about us is inherently wrong. Guilty as charged.
I walk by those collapsing buildings almost daily. Someone gave up on them for good reasons, I’m sure. Now the natural processes of entropy have taken over, insuring their complete erasure. When will that point come for me? When will I be irretrievable like those buildings, no longer a fixer-upper, too weak, too incapable of breathing on my own, too frustrated by having to express myself through electronic devices, the next surgery or assistive device seeming superfluous, not worth the expense or the minor improvement it will deliver? I have no idea when that moment will come, or what I will decide when it arrives. There are certain decisions that can’t be made in advance.
Only recently have I realized that I’m excited by this, by the ongoing uncertainty in my life which keeps me on my toes, scrutinizing everything more closely: my husband’s taut calves, the surgeon’s long fingers, the faces of the nurses as they laugh about my withholding veins, the vagaries of my breath. I have cited Keats before, and I will again, because his idea of negative capability has been so important to me. “Negative Capability,” he wrote in a letter to a friend, “that is, when a man is capable of being in uncertainties, mysteries, doubts, without any irritable reaching after fact and reason…” He is talking about learning to live with uncertainty. He discusses this in relation to poets and writers and philosophers, but the concept is relevant to all of us. It is the very nature of life to be uncertain, so it behooves us to learn to accept that.
It is undeniably difficult to live in a state of uncertainty. Worry abounds. What if this? What if that? And yet — doesn’t a lot of life’s thrill come from exactly that? Waiting to see what your unborn child will look like. Excitement over an upcoming competition in which you are a contestant. Wondering if you and your boyfriend will decide to tie the knot. For me, such moments of not-knowing have been the most memorable of my life, the ones touched with glitter and hope and possibility, the ones I like to revisit. Who knew that the period leading up to death, fraught with uncertainty and unknowns, would also be such an exciting time?
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