Shortly after I was diagnosed with Multiple Sclerosis I began to detest the question “How are you?”
“I’m fine” is not a proper answer, for one thing, hair is fine, not people. I might be pushing everything I have to appear I am operating within normal parameters, but I would never reveal this truth. If I have to tell you how hard I’m trying to stand up, then just standing up wasn’t good enough. I am almost certain the person asking does not really want to know all the things I am doing to look “fine” in the hopes no one will ask me how I am.
Today, almost thirty years later, the question is as difficult as ever.
After three decades of disguising myself as healthy, I don’t know what else to do. I have been fortunate in many ways, I do not appear to have aged, and I have played the part of reasonably healthy younger man well. I have not needed to adjust my act, and became emboldened by success. Then, like the roller coaster at the end of the ride, there was an immediate change of velocity. As one friend said of his experience “I woke up one morning and I was old.”
I woke up in the hospital and I was old.
This is the part I have found troubling, referring to it “like the roller coaster at the end of the ride,” feeling a sense of conclusion. Stuff happens, I have known this for thirty years at least. I have friends with Multiple Sclerosis who have lost the ability to walk, and have had to make a multitude of adjustments in life. I have known many people who were simply struck by ill fortune. I have known others who have not survived. I am, as I knew, fortunate. For some reason this has not made the adjustments any easier.
As I begin to recover from my “accident,” I am finding my recovery will not be as complete as I might have hoped. I will not be one hundred percent of what I was, but I will be closer to one hundred percent of the average fifty seven year old white male. Well, not in mass, but in many other ways. Even now, as I push my recovery, I am told I am doing too much.
I try to take this all seriously, because I am not certain about my mental facilities. What if they are right, and I really shouldn’t be trying so hard?
I gave driving a great deal of thought, determined to examine all the variables. I can turn the key, and although it takes both hands to move the gear shift, I only need to do that at slow speeds, such as parking. I have always driven with one (my left) hand. I can manipulate all the controls and see all around me. I do feel fatigued more quickly, driving a little more than an hour each way is all I care to try at this point. My doctor still feels it is a bad idea, not exactly chastising me for driving to an appointment the other day, but making his disappointment known. I knew I wasn’t ready to hit my old haunts (and their additional impairments), but now I feel the need to back off a little more, be a little safer.
I start physical therapy next Friday for my elbow, I’ve already been advised it will not be functioning as well as the other. I’ve been told a number of things about my body over the years and prefer to just see what happens, knowing the range of motion is expected to be reduced gives me a goal to exceed. My fingers are already moving fluidly, I’ll be making music as soon as I can figure out how to hold the guitar. Drumming is out for now, until extending my arm doesn’t make a sound of its own. I also begin “cognitive therapy,” which will be interesting and probably fun. Unless someone determines I have suffered excessive brain damage, which is bound to throw my confidence into a black hole.
My eyes, and the bones which hold them in place, are the subjects of Monday’s appointment. Something must be physically wrong for my vision to change the way it does, focus shifting as I stare forward. I just need everything to stabilize before getting another prescription for lenses. And there I go, assuming everything will stabilize. I spent my life making things work, I’ll hold my eyes in place with duct tape if I have to.
Wednesday we’ll be investigating why I can’t hear through my right ear. It had been getting a little weak, but since the accident the hearing on that side is gone, and although I was in a haze in the hospital, I do recall hearing one of the doctors saying he thought something was wrong which could be adjusted during the skull surgery (which didn’t take place because I kept healing).
The following week I begin catching up with all the health issues I’ve let go since Emma died. My new general practitioner was amazed I wasn’t reduced to dust in the fall, my osteoporosis has been untreated for seven years. So a new Dexa Scan and rheumatologist for treatment are in order. A new Neurologist seems an obvious choice, so an MRI is expected. The doc wrote prescriptions for my antidepressants, but a shrink is certainly on my horizon, there are a number of issues which need to be addressed; I am not the man I was 31 December, I know this for certain as my emotions have flat-lined. And of course there are still follow ups with the neurosurgeon to determine what physical damage to my brain still exists.
So, with my usual duality (good sign), my evaluation of wellness is I am better off this happened, it steers me towards treatments, but the happening itself has been awful. I have lost independence and ability, I feel “old.” I am not ready to feel old. I have a certain presence, a style which may need to be adjusted to fit an old man. It may be a mostly temporary situation, but the rest of me is not getting any younger. This is happening all at once, rather than complain I failed to prepare, I will try to rejoice I have been so healthy so long.
These are just the physical and emotional issues I am dealing with, a subset of the emotional issues are affected by the financial state of being unable to earn a living. I have never had to ask for help before; if you have not already, please stop by the GoFundMe page set up by a friend to help carry me through these difficult times. Even if you cannot help financially (maybe see it as supporting a suffering author?) perhaps you can use the “poster” button near the bottom of the page and print out a copy to share with friends. Great conversation possibilities there, and perhaps I’ll gain a reader through your good deed.
I once met Buddy Rich, his advice on drum solos was “take something simple and make it look hard, or take something hard and make it look simple.” This is hard for me, I hope I am making it look simple.
How am I doing?