I am not really sure what the point of writing is today. If you will allow it, a little stream of consciousness would probably be good for me. If not, shut this off now, and read no further. I am coming off of a week that would have left me tired in my old normal able-bodied state. It involved travelling by plane to Phoenix, an adventure for anyone in the dis ease category, even more for one who must have a wheelchair all the way to the plane seat. I arrived home late and put some finishing touches on materials for Saturday’s doctoral course, taught most of the day on Saturday, and then sprang forward like the rest of Minnesota to lose an hour of sleep. So I am just whacked today. On days like this, I like to listen to music, or maybe just look out the window, contemplating the mysteries of life and love and doing the best that I can with what I have left. These are also the days of vulnerability, of being so tired that my impairments are more pronounced, more obvious, more up front. And of course, in this state, I am easily touched by beauty and heartbreak, emotions well up without any apparent provocation, and random touch can cause me such sensory overload that my muscles—or what is left of them—seize up with cramps of involuntary fasciculation. Weird huh? But one of the gifts of dis ease is fatigue’s filter.
There is a perverse beauty to these gifts. The heightened awareness of physical vulnerability is almost sensuous in its presence. And the fatigue can be like a convex mirror, bending and shaping the images it presents into new realizations. I wouldn’t say that I actually like the feelings that are inspired by such tiredness, but it reminds me a great deal of descriptions I have read of vision-quests. The damnedest things suddenly become very clear—past pain, human frailty, regrets, joys, and visions, such visions of color and sound and wholeness beyond physical limitation. It is altered consciousness at its most primal. No drugs needed, alcohol not within a sniff, only the purity of fatigue washing over my senses.
Would I have paid so much attention to physical dis ease in the world had I not been the recipient of the gifts of ALS? If I am honest, I have to admit that the arrogance of my own able bodied existence allowed me to believe that I was in complete control of my fate. If I am honest, I would have to admit that I imagined disability like I imagined being an astronaut—it was a theoretical construct, an unreality completely out of reach, and if disability came, it would be a swift end to an active lifestyle. And of course, being a good white liberal, I truly thought that I could properly demonstrate care about the implications of dis ease, whether they were social in terms of sensitivity to the barriers that come with its disabling forms, or personal in acknowledging the needs of brothers and sisters just trying to make a go of a life well lived.
I had no idea.
Here is what I know. The physical decline of our bodies is inevitable. We can do only so much to ensure that our bodies will work as well as they can, but our bodies will break down eventually. Dis ease hastens the break down, and it pushes us to find ways to cope with its immediate challenges as well as its ultimate destination. And for me, the way this goes is entirely dependent upon whether or not I can come up with a sweet spot on which I can focus, a point of solace or strength or inspiration or just a place where I can crash the bad stuff into the good. I don’t know if you have this focal point. For me, it is almost always an image of Ev or my sons. It used to be that I would think back to the feel of the sun on long bike rides, but I can barely remember that feeling now.
Better to think on my beloved.
What makes the dis ease journey so challenging is that lives don’t come with technical manuals. Countless humans have tried to write guides for the life well lived, but most of these are as clumsy and well-meaning as one would expect from the lack of surety we all experience about well lived lives. Some are written by shysters and buffoons, others by incredibly caring people. Most of them are not technically meaningful, even when they are well meaning. And in a way, I guess that writing a manual for life is what this blog might be about. But here is the caution. It is a manual for an artist, when the requirements might be more toward engineering. God knows that if I could fix the electrical system, I would do it, but the technical fixes are not available. So it reminds me of the line in Zen and the Art of Motorcycle Maintenance–“Assembly of Japanese bicycle require[s] great peace of mind.” With no engineering miracle in sight, peace of mind has become more and more important to me. Having a dis ease such as ALS focuses things away from the engineering and into the metaphysics pretty quickly.
Oh I know, I am playing the engineer game. I’m in a drug trial, I troll the internet looking for the latest research. I participate willingly in clinical activities, and I am constantly on the lookout for technology that will help me conserve energy and stay reasonably engaged with friends and family. But in the end, it is the artistry of living, the peace of mind, the right attitude that really determines how things are going for me. And that is why I think the recovery days are so important. When I was young and able-bodied, I just didn’t see the need for reflection. As I grew older, I recognized reflective needs, but was so caught up in all the stuff I was doing, that I still couldn’t make the time. Now, the time is not a choice. The fatigue of dis ease insistently forces me to build in the time for my head and my heart and my soul, because ultimately, the engineering problems will not be solved. ALS, unlike so many other manifestations of dis ease, will not get better.
So I am in this space of fatigue and emotion and visions from mountains that I’ve never visited before, craving the engineering fixes that are not available, and completely given over to a day of reflection and recovery, as much as recovery is available. If I were rewriting the manual of my life, I’d have built this time in long ago. To build a life facing dis ease, one needs peace of mind, and that is a great place to begin. There is engineering, and there is artistry, and there is vision.
At least if I am not too tired to recognize it.