- Disabilities & the Disabled
MS: Struggles Along the Way
Things Fall Apart; the Center will not Hold
After thirty five years in Medicine, after twenty some in active practice of Emergency Medicine, I found myself always tired, less motivated, moving slowly, feeling no longer up to the task of seeing the plethora of patients waiting for me, frustrated at the physical slowness when mentally I felt no terrible challenge.
A 'sea anchor' is a large piece of iron dragged behind a sailing vessel to impede its' progress, to allow following craft to catch up and then, cutting loose the anchor, to turn about and prey on the pursuer. I felt as though I were running at full sail but unable to cut the anchor and having no following prey to catch. I was just unable to move faster, to become excited and motivated. This lasted a year or so then came a period of stumbling, tripping on sidewalks during long distance runs, a sudden inability to ski after skiing quite nicely from my boyhood. Gotter dam!
At this point I had no problem writing or suturing; my hands were mine to use and the intention tremor which now affects my right hand or the weakness and clumsiness now a major feature in my left weren't yet there.
Not showing control over my too-often flailing limbs is frustrating to say the least. I include a few pics of the end result below. What am I to do?
A flailing gesture and here is the result
Falling into the dishwasher and here it is
A Rosary, unhinged
What to do? How to act so as to limit Embarrassment and Resolve the Issue
Number one: Get Unstuck.
The popular psychologist, Daniel Amen, tells us that when we become too involved in our present task, when our natural tendency for OCD takes over, when the simple physicality of our self-assigned task is suffused with a need to Succeed At All Costs, he rightly says, we can Become Stuck. Been there, done that. Many times.
I am still learning as I blunder my way through life and one thing I have incorporated into the way I do things is that I know when physical nonsense has happened and I try to limit the inevitable embarassment to come. I see when I am or am about to become Stuck. I do what Amen has taught me. I drop everything where it is and walk away. I reboot. It's amazing how calmer everything is after a self-imposed Timeout. I return to the scene, appraise the damage done and its' Immediate and long term consequences and take the simple steps I have to collect, simplify and store things away for later repair and resolution.
I don't have a picture of similar 'stuck' situations, but can describe them:
1. Out at dinner, I pick up a coffee cup with my right hand, take a drink, extend my hand to replace it in the saucer and am unable to set the cup down. A reciprocating stutter motion begins which will spill the contents Everywhere if held up or clatter the cup uncontrollably if I move to set it down. What a bore. I have almost completely resolved this by not using my right hand to eat or drink with.
2. When I stand up and try to transfer myself from a stable position through an open space to another stable place, I may stumble in the use of my hands and feet. I may suddenly realize that a fall is inevitable. What do I do? I sit down on the ground and give myself a chance to reevaluate the physics of my recent choices. Embarassing? A little but at minimal cost. I can get up and the risk of by-the-by destruction is minimalized.
3. I misjudge my need to micturate and, again, I'm in a public venue. I gotta go; what do I do? I swallowed my pride a few years ago and always wear 'adult underwear', or 'adult comfort underclothes' or whatever they call them. I call them Diapers. MS has had its expected effect on my spinal cord. It has severely limited the capacity and good function of the bladder. An amazing function disbursed by The Almighty we must never forget is the baseline control of the bladder in times of neurological loss of control. When worse comes to worse, the bladder will hold 400cc but no more before it must empty. This equates to q-four hour micturitions, which is doable without a Texas catheter (look it up!) or similar. Nothing worse than careful timing of drinking fluids.
A List of other life Challenges
About two years ago, in an oft-repeated effort to make me more put-up-withable, I went to a local center to assess my ability to drive. This was a mistake in many ways, though from a fly-on-the-wall perspective, I was getting a bit Dangerous on the road. Their evaluation included a physical exam, complete if not exhaustive, an extended period of one-on-one discussion and then an hour behind the wheel, out on the road. After the first three hours of physical and mental exam, I was worn out, so my stuttering right foot control of gas and brake did not show me well and at the end, it was recommended I not drive any more. Now, if I'd just kept my mouth shut it might have worked out better in some ways. I didn't realize how demeaning and downright infuriating it can be no longer to be able to drive-thru a fast food outlet, pick up my meds at Walgreens, get a private haircut, go to the bank for cash, pick up dry cleaning, take a trip to a nearby museum or library or roam the desert countryside. I had enough 'physicality' to get out of my car and do simple things like buy gas at the pump.
All of that disappeared in a second and may never return. Alas!! My problem started when I drove to Tucson from Phoenix, to attend what I thought was a funeral of an old colleague. It wasn't a funeral, only a 'memorial service' and I knew no one there. I left after snatching a sandwich at the after-event luncheon, then tried to drive home. Thirty miles out of town, I drove into a Heboob (A Gawd-Awful wind/rain storm) and true Hell commenced. Hurricane winds, blistering rain; a six-hour drive to Phoenix itself, then 1 1/2 hours north through town and navigation of ridiculously-flooded roads into Cave Creek. Not surprisingly, I ended up having a good old-fashioned flare, which left me unable to control my bodily functions, let alone to get up and walk. I was not able to hide the problem and spent the next two days in the hospital. The driving re-exam episode followed right after.
I have cast about for a model I might use to help settle myself into my new Truly-Handicapped role. The image I have used is the detective, Dorothy Sayers' Hercule Poirot. He leads a full life and is always In Control but cannot and does not Drive. He depends on Captain Hastings to drive him about or uses public conveyances: train, plane, ocean liner and the like. So, would I.
Maybe I should have kept teaching. My disability insurance proscribes me from practicing Emergency Medicine but so many avenues seem to have been open in retrospect. I became fully papered and approved by the Boards appropriate for ATLS, ACLS, PALS instruction and so forth and this was a good and valuable thing, whether I taught or not. A series of flares did get in the way but really, I can only blame myself. Almost ten years out of practice, I think I have to see what other lines of endeavor I have.
As it turns out, an avenue has opened. This blog especially and my fairly wide correspondence lets me use my Medical education, as well as my years in English Literature and Psychology to comment on Life As I See It. If anyone wants to read it, that is..
Holmes told Watson that listening to and unraveling other's conundrums was how he 'earned my bread and cheese.' A fly on the wall perspective backed by my unusual life experiences, education and predilections may help me onward as a Blogger (what a word!), a Journalist, a Diarist, a Correspondent.
My family is long lived. I've got at least forty years to go, 'with the blessing.'