When I was told that I had ALS, I was devastated, and not being given a lot of information by the diagnosing neurologist, I naturally turned to the internet to discern what was going to happen to me. There is a great deal of information (and misinformation) about the progression of ALS on the web. During those first few weeks post-diagnosis, each new revelation about ALS was hard, raw, and terrifying. And I thought it was all about me. Of course I come to this me-first perspective honestly. We are taught that tragedy is about our own reaction to it. But with all the Youtube video, the websites, the pictures, the personal stories about ALS, there was something that emerged for me that heightened my fear. Slowly I became aware that my ALS wasn’t only about me. It is about us. The shock for me was the realization that when we face dis ease, we face it not alone, even though we might feel that way, but in tandem with others, and those others suffer just as much if not more in the dis ease process.
I’ve been really lucky in my life. I have a great wife, great kids, and great job. When Ev and I got married, we vowed to each other, “for better or for worse.” I know that, at least in our country, nearly every couple makes this commitment–for better or for worse. We usually take it farther, clarifying “in sickness and in health.” After my diagnosis, I found myself hovering over my memory of our marriage vows like an out of body experience. I remember actually looking down at these two earnest young people, Ev and me, so in love, so naive. I couldn’t help it. I actually wondered, if Ev had any inkling of what was to come, would she have cast her lot with me? On one level, it really isn’t fair to ask such a thing, but on another, it is entirely reasonable, for such is the kind of thinking, feeling that comes in the traumatic aftermath of dis ease diagnosis. And as I floated between memory and presence, I realized that the knowledge I was coming to understand was not only my fear of what ALS was doing to me, but it was the dawning realization of what ALS care was going to do to my beloved partner and my wonderful sons.
This is not an idle fear. Research on the effects of chronic and devastating dis ease on people and their caregivers shows that, while patients can generally reach a certain level of acceptance with a reasonable emotional response, the same cannot be said for caregivers. In other words, PALS, people with Alzheimers, diabetics, and others can find satisfaction in their lives, in spite of their condition. But the same research shows something very different for their friends, families and lovers. Those responsible for the care of the chronically ill are far more susceptible to despair, with their emotional quality of life actually diminishing over time. This shouldn’t be surprising. The responsibilities can be crushing, and the redefinition of roles can put enormous pressure on caregivers. This is not to minimize the effects of the dis ease on the afflicted. I have corresponded with too many PALS who are at the end of their emotional rope to diminish the effects of dis ease. But dis ease has the subtlety of an atomic bomb. It smashes indiscriminately, befouling everyone within the familial and friendly circle.
I have personally seen this happen not only with my own family, but also specifically with the adult children of people with dementia. The pain and confusion of redefining a relationship with one’s parent is difficult. The realization that your mom or dad is no longer that person that took care of you, was there for you as your greatest critic and fan, who instead now needs the kind of care that you always associated with young children, comes hard. And with dementia, often the tipping point where care needs to be raised and roles redefined, is hidden until almost the moment it is needed. Logistics, finances, emotion, and confusion about the changing roles of caregiver and mom or dad or partner or spouse come together in a perfect storm of emotion and stress. Dementia strikes, and everyone near gets dementia all over them.
When I hear politicians and policy wonks complain about the cost of dis ease management, I feel like they are talking about Martians. They seem to believe that we can blame those who are ill with the repercussions of chronic dis ease. They bemoan the dollar costs, while pretending like the rest of humanity will never be dis ease afflicted. It isn’t logical. Given the experience of aging, chronic dis ease is in everyone’s future. If it doesn’t affect you as an affliction, the chances are very good that it will affect you as a caregiver. We rarely think of how systemic are dis ease’s demands. Instead, we act as if chronic dis ease happens to “those people,” others who are on the margins of our own existence. At least, and I am sorry for this, that is how I was.
The real issue is how to make dis ease management normal, normal for a society, and normal for a family. There is an entire side to dis ease management that is missed, because once dis ease is known, it takes on a presence, almost like another person in the room. It worms its way into the intimacy of your relationships. It shadows your gut, and disrupts your sense of peace. It seeks no less than total domination, if not of the conversation, then of the lightness and color in the spaces of your love. The balance dis ease demands, between overwhelming consciousness and total denial, would be difficult for the strongest and healthiest among us. The fact is that the real costs of dis ease management come in ways that are almost too difficult to measure, and yet remarkably easy to perceive. Such issues do not lend themselves well to policy debate.
As I see my own physical regression taking place, I am hyper-aware that Ev picks up more and more of the daily responsibilities—laundry, food preparation, cleaning, and of course, all this while she is working in her full time job. We haven’t even hit the point when I will need constant care, where every small item of daily grooming will require the support of someone else if it is to be done. The stress and demand that ALS makes on her far exceeds the emotional and physical resources that any normal person might hope to possess.
The toll that chronic dis ease management exacts is real, and it requires that we learn skills, tricks, and mindfulness in its management. For me, this past nine months has taught me that the first step is to pay ourselves. I have learned to conserve energy, to sit quietly and just be. Ev has recommitted to old normal, healthy habits–exercise, diet, sleep, yoga. We try to balance the conscious with denial. This allows us a fighting chance to win the wrestling match that holds despair at bay, and creates the space where we can still be best friends and lovers. Strength is only available through care, care for one’s self, and care for others. Even the healthiest among us needs respite. For the caregivers of the chronically dis eased, it is the post-trauma that means the most, and respite and care are exponentially required.
Perhaps the greatest realization for me in all of this is that nothing is singular. Dis ease casts a far greater influence than just one person. It walks through the door, sits down in your living room, and it asks, “What are you going to do about me?” If we respond, “I don’t care,” it is at our own peril.