Editor's note: The word disease is written dis ease by Bruce Kramer in all of his blogs, which coincides with the title of his blog, Dis Ease Diary.
|Bruce Kramer, Ph.D.
A couple of years ago, I wrote about the psychological and physical effects of falling. At the time, I had fallen a number of times due to leg weakness. Indeed, it was falling that convinced me, pre-ALS, to see a neurologist. Back then, I related how falling made me feel afraid, timid, less confident in my body. Over time, I mitigated the effects of falling by moving to more and more supportive and purpose-built medical equipment, including the power wheelchair in which I now spend the majority of my days. And I also sought to psychologically change the meaning of falling by associating it with the adventure of skydiving — the experience of falling out of a perfectly good airplane on two separate occasions.
Of the two effects, the physical are pretty straightforward. There are scrapes, cuts, bruises, and depending on the circumstances, broken bones. Luckily, my experience with falling has always been limited to the lesser physical effects. I have never broken anything, my pride notwithstanding, and anything that was physically affected required only a short amount of time before I felt it whole again. The interesting part of the physical is that for a few days or even weeks, it is there to remind you of just what can happen when you fall, the touch upon a forgotten place, the breath that stops at sharp pain, the scab present in the mirror and not even felt. The physical effects take place and if they are not too serious, begin to fade. That is not the case with the psychological effects.
I have always found the psychological to be more profound. After any fall, there is a psychological chaos that goes on both inside your head and your body. Breath feels shaky. Confidence has been disrupted, and presence is compromised. The mind is dulled by the experience, leaving one grasping for words and feeling at odds with one’s assumptions about the physical world, how things work, your relationship to the broader environment at large. For me the psychological bruising is a phenomenon from which it is far more difficult to recover than the physical. Given all of this, I thought I had taken enough control of my environment to put falling into the category of been there, done that.
Imagine my surprise, my shock, to experience the most significant fall I have yet to experience this past week.
Power wheelchairs are very technical machines. From time to time, it is important to change the settings, update the structures and adjust the mechanicals. This can take anywhere from an hour to four hours or longer. My favorite wheelchair guy is Scott, a man who understands what it means to be in a wheelchair himself, having used one for the past 33 years. He knows a lot of tricks, how to avoid sores and ways to make the wheelchair more comfortable. What I really like about him is when he is stumped, he turns to his very knowledgeable colleagues, and they all put their heads together and come up with a solution. He is really quite remarkable, for he of all people knows that the space for people in wheelchairs between getting to where they want to go and disaster can easily be mere millimeters.
After my last visit to Mayo, we determined that I needed to get my chair adjusted, and I made an appointment with Scott with the understanding that it was going to be longer than usual. Wheelchair adjustment is highly individualized — what works for one person might result in pain for another. It is much more of an art than a science or technical skill, and the amount of trial and error required for this particular appointment kept me there for four hours. I was pretty blitzed by the end, but feeling confident that we had made the right changes I felt ready to take on the world again from the purview of my chair. A little after 5, Scott and I rolled to the front door of the darkened building, and he said goodbye. I rolled out the door, turned right, headed for the van and without meaning to, got too close to a curb.
To use a hackneyed cliché, what happened next was like a slow-motion movie to which I already knew the ending.
I knew I was in trouble when the wheelchair started to rock. I tried to kill the power to it immediately, but I couldn’t make the switch work. I saw myself rock right, then left, then farther right and completely over, my 190 kg wheelchair landing on top of me, pinning my elbow behind me and pushing my head and face into the pavement. Luckily, I was wearing a neck brace, or I might have broken my neck. Unluckily, I was wearing a neck brace which pushed into my neck and chest so that each breath seemed slightly smaller.
It was a confluence of errors. Ev tried to stop me, an impossibility. Her phone was out of juice, and I wasn’t carrying mine. The wheelchair place was closed with no lights on. And its location is an industrial park where very little traffic is likely to pass after 5 in the afternoon. I remember thinking, “So this is how it will end … ” my breathing continuing to slow. Ev was pounding on the door and screaming at the top of her lungs for somebody to help. I was weakly calling, “Ev, just come and sit with me.” Miraculously, someone heard her, and after being down between 10 and 15 minutes, suddenly there were people all around me who had been working late.
I am so thankful.
Luckily, these folks know how to work with a power wheelchair. Between them, they were able to right me and get the chair back on its wheels. One of them used the attendant control and took me into the building to warm up. Another called 911. All were comforting and kind and very concerned. My first ambulance ride, and just to assure you that I am only bruised and scraped, the ambulance didn’t even turn on its lights or siren. After an exam at the hospital, my kids and Ev brought me home.
And here I am.
I have no words of wisdom this week except to say that even at what seemed like to me the very end, my body still mattered. When I could feel consciousness slipping, I remained present in my body, physically aware in spite of the psychological shock. I could discuss with you the philosophical failings of Cartesian mind-body duality at this point, but I am just a bit too tired, and still very sore, bruised, and shaken up. Even Ev is bruised from the ordeal, a goose egg on the arm and a big hematoma on the leg. We can talk about it another time, for my awareness of just how fleeting life can be, how narrow the tight rope on which those of us with disability roll, how lucky and unlucky the contiguity of variables leading up to and following any event, is hyper-sensitized into a weirdly balanced consciousness. My lack of words is a failing of language, not of learning. I learned plenty in this particular fall.
Needless to say, I am just happy to have a little more time for discussion. Ev and I are not finished just yet.
This blog was posted originally on April 6, 2014.
About the Author
Bruce Kramer, Ph.D., was diagnosed with ALS in December 2010. An educator for his entire life, he served as the dean of the College of Education, Leadership and Counseling at the University of St. Thomas in Saint Paul, Minn., until October 2012. Since March 2011, he has written the Dis Ease Diary, reflections on living and dying with ALS, and is featured in Minnesota Public Radio’s Living with ALS series. Kramer is married to Evelyn Emerson, a teacher, and he has two sons, two “daughters-in-love,” and a grandchild on the way.