This word has evolved over time into something that can drive me absolutely bonkers when it’s used to mean ‘merely’ or ‘simply’ in regards to some sort of activity. Since multiple sclerosis barged into my life there aren’t many things I can ‘merely’ do any more, no matter how simple they might be for everyone else.
It’s one of many words that have acquired new meanings for me over the last several years as I became progressively more disabled. ‘Walking’ was the first one, since that was the first thing I noticed back in 2005 about myself that was deteriorating at an alarming rate. ‘Gait’ was one I hadn’t thought about much until that time either…it conjures up images of high-stepping horses and bowlegged cowboys sauntering around the ranch, but I heard it a lot from the doctors trying to figure out what was wrong with me, a completely alien thought at that time.
It didn’t take long before I started to despise hearing it. The more time I spent around different doctors, the more I felt like some kind of specimen, like mold on a Petri dish under their clinical, cold gaze. The attention was most definitely unwelcome. Gait irregularity soon became gait abnormality, and then a flood of new and unpleasant words followed: foot drop and peroneal nerve dysfunction, spasticity, peripheral neuropathy, on and on…good grief! I didn’t get what all the fuss was about…walking for me had always been almost as unconscious a thing as breathing, and all I wanted was to get back to that. Why was that suddenly such a big deal?
I’d always enjoyed walking, and in my early twenties was actually a foot messenger for a time. After a time I no longer thought about distance in terms of city blocks, to me it became how much time it would take to cover a given route. I’d learned long before how to to power stride through New York City crowds, and for me it was like opening my body’s throttle and watching the scenery pass as I scooted along, unconsciously sidestepping dallying pedestrians and obstacles in my way as I chewed through the distance to whatever destination might be my goal. I didn’t think about it, I just did it. Whoops, there’s that ‘just’ word…but back then it had the same connotation for me as it did for most healthy people. It was an adverb in that context, an inconsequential thing that wasn’t deserving of so much as a scrap of thought or attention.
I was a bicycle nut too, starting at a young age. I loved the way my bike could eat distance like magic, all I had to do was keep pumping my legs and watch the miles go by. When I was in high school, I’d often bike to school, and when school let out I’d bike back uptown, rarely going straight home. That would have been way too easy; I’d head crosstown for a bit, zip through stalled traffic under the Pan Am Building, then a quick jaunt up and over to get into Central Park. A lap, maybe two around the park and only then I’d think about heading home. Easy sauce, as they say.
Years later after I’d settled in Nashville I took up biking again after a long hiatus. Once I’d gotten through the re-acclimation gauntlet of wheezing and wobbling my way through the uphill climbs that everyone who’s been away from biking has to pass, I was delighted to find it was just like old times. From my rented apartment in the upstairs of the elderly house I lived in, I’d zip a few miles towards downtown, do a few circuits of Centennial Park, take a break at the nearby Cafe Elliston for a sugar/carb jolt, then zip on home again. Zip, zip, zip. And I’m a smoker, too…nothing to brag about, but the fact that it didn’t affect my walking or biking says something about my body’s resilience.
The alarms started going off in my head in early 2005 when I picked up a slight but persistent limp. At first I thought it must be a pulled muscle or pinched nerve from lifting and throwing sacks of checks and bank documents as I loaded and unloaded my airplane every night. I started seeing a local chiropractor, and while his manipulation of my spine and limbs felt good, the limp just wouldn’t go away. The clamor of those internal alarms got louder as spring came on when I’d occasionally fall off my bike while trying to dismount. I chalked it up to being out of practice and general klutziness , but the moment when I realized something was badly wrong came not long after. One fine day I fell over with the bike on top of me when my left foot refused to rotate just the small amount needed to free myself from the pedal clip as I came to a stop at an intersection. When I wriggled free and got upright again, the realization that I couldn’t swing my leg over the bike to re-mount it hit me like a wrecking ball. I felt humiliated and defeated as I guided the bike back home, limping and leaning on it for support all the way…just a couple of blocks, but it felt like an endless trek. My mind was trying to go in a dozen directions at once as the implications of what had happened began to sink in, along with the realization that I’d been shoving my worsening limp and reduced movement of my left foot into the landfill of my subconscious for some time. I was a professional pilot, fergodsake, and pilots are supposed to be in as nearly perfect health. This foul limp was now obvious, I couldn’t conceal it any longer from friends, coworkers…and my upcoming visit with my flight surgeon to satisfy my annual FAA medical certificate, without which I’d be unable to work in my chosen career as a courier pilot.
That spring day was the last time I rode my bike in the street. After the fall, I obtained a stationary trainer that let me secure the bike so I could ride it in my living room. Since the machine was locked into the stable, heavy trainer base, it was unlikely to fall over. Determined to exercise that limp away, I rode and rode, but to no avail. The limp persisted. The only relief came from watching my leg muscles redevelop and show clear definition…I’d been reading too much online about various horrible things that could cause my limp other than a pinched nerve, and the top candidate until that point was amyotrophic lateral sclerosis, otherwise known as ALS, Lou Gehrig’s Disease. It’s fatal and nasty, and people afflicted with it generally die within a couple of years. Their muscles atrophy until their body might as well be that of a jellyfish, and when they can’t push or pull air into or from their lungs they pretty much asphyxiate. The truly horrible part is that their minds generally remain clear and unaffected, so they get to watch, clearheaded and sane, as their body falls apart and kills them.
Since my muscles weren’t atrophying, I was fairly reassured that ALS wasn’t likely to be my fate, but kept searching online for what might be ailing me. The internet can be a blessing or a curse with all those volumes of data floating around, and of course I dug up plenty of other possible causes of my deteriorating mobility to worry about, lots of them nastily fatal. Then one evening I prepared to mount the bike for my daily session, I just swung my leg over it as usual, but this time hung up on the frame…and over I went, this time on top of the bike, still bolted securely to the trainer. No more excuses, I started looking for professional help.
I’d always been healthy as an ox and my annual visit to my flight surgeon had been the only contact with the medical caste I’d needed for years, so my first step was finding a GP for some guidance. I selected one based solely on the close proximity of his office to my home. Disaster. In my layman’s opinion, the guy was a fruitcake. All through my consultation with him, he kept a little side conversation running …with himself. At the end he said, and I quote directly: “Well,” he said, “your problem could be either this or that.” Exact words, mind you…he didn’t put a name to what ‘this‘ or ‘that‘ might be. He went on: “If it’s this, there might be something we can do. If it’s that…you’re fucked.” Apologies, but that’s what he said. I got out of there fast and never looked back. Either the guy was absolutely deranged, or he really wanted to get rid of me, or both, and I was happy to oblige him. I still marvel at that encounter…that guy had the most unprofessional demeanor I’ve ever seen, especially for a physician.
The orthopedic surgeon I saw next took plenty of X-rays of my lower spine, and had me get a couple of MRIs of the same area for good measure. Everything came back negative. He was a resourceful little scamp, though, rather than exploring upper spinal or brain images, he decided that because I was an Evil Smoker, it had to be some exotic cancer that was causing my foot drop, and told me so, more or less in those words. He took it upon himself to schedule a complex…and expensive…series of bone scans at Vanderbilt University for me. I cancelled them all without a qualm. I didn’t have cancer, then or now. My body knew there was something wrong, but it was some sort of neurological issue, not cancer. Another quack left in the dust with another shocking display of unprofessionalism…this guy obviously let his personal bias against smokers color his professional judgement, and that’s inexcusable in my book.
Had he ordered another MRI of my upper spine and perhaps my brain, incidentally, he’d have seen the telltale MS spinal lesions and ‘white spots’ in my brain, from MS breaking down my blood-brain barrier and allowing dead white blood cells to accumulate in my brain rather than being properly disposed of by my circulatory system. I suppose he was too busy concentrating on new ways to punish me for the heinous crime of being a smoker for that to occur to him.
Finally the appointed day for my flight physical arrived. By then, I’d noticed that my left arm and hand were weakening, as well as my left leg and foot. After laboriously filling out the standard required answers on the medical certificate application (the first time I learned to fear the dreaded words “just fill out this form”), I lurched into the doctor’s examination room and tried my best to be all normal and healthy. He wasn’t fooled of course and told me that while he wasn’t actually going to deny my application, he could not ignore my obvious physical symptoms and would not issue me the certificate until I got it checked out by a neurologist and got a green light.
Great. I had less than a week before I could no longer legally work. All that to-do over a piece of paper. Just a piece of paper.
My local neurologist I’d just been referred to by my chiropractor told me she was backlogged and there was no way anything could begin for two to three weeks. “It’s just a few weeks,” the receptionist told me. I now know that’s pretty quick in the medical world, but at that time it sounded like an eon. In a panic, I called an old friend who’s a researcher down in Shreveport, Louisiana. After checking around, he called back to tell me I was in luck, he’d spoken to his colleague who was not only a research scientist but a practicing neurologist, and had agreed to see me if I could come to Shreveport. No problem, I was in pretty good shape at the time, so down to Shreveport I went in my car.
My friend hadn’t seen me in years and didn’t pick up on how draining walking had gotten for me right away. He dragged me all over the LSU campus before leaving me at the correct building, and by the time I stumped my way to the doctor’s office, I was exhausted and moving really badly. The neurologist certainly noticed this, and though he nodded reassuringly while I described my relief at seeing my muscles gain definition through biking, he evidently wasn’t as ready to discard the possibility that I had ALS as I’d been. After giving him my history and submitting to a short physical exam, he told me to appear at a local imaging facility the next morning for some MRIs and would make the appointment for me after I left. As it turned out, he did more than simply schedule some MRI pictures…he had to’ve been downright chatty with the person he spoke to there.
When I presented myself at the imaging lab the next morning, the woman who signed me in greeted me with a chipper “Oh, hi, you’re here for those MRIs…to confirm the doctor’s diagnosis of ALS!” She seemed awfully cheerful as she hit me with a new reality I wasn’t expecting…they thought they’d be confirming the presence of a fatal disease in me. Just a little possible death sentence dropped in my lap first thing in the morning, nothing to get upset about.
What a fun thing to turn over in my mind for the next few hours as I lay in the steel and plastic prison of the MRI machine, I don’t know how to properly thank that nice lady for such a thoughtful present.
That afternoon the neurologist called me with his findings. I did NOT have ALS as he’d thought at first (now he tells me), but I did have multiple sclerosis. I felt some glimmering of hope when I heard that…I didn’t know much about MS at that time but it couldn’t be as bad as a diagnosis of ALS would have been. I asked him if he was sure of his conclusion, and he replied “Oh, yes, looking at your MRI films, a child could tell you have MS.” Allrighty then.
After spending a week in hospital to have a bag of steroids infused into me each day, I was discharged and headed for home. That was the last I saw of that doctor. In the weeks and months to come I found that he was not at all on my side when it came to returning me to work as a pilot, part of a larger picture I discovered piecemeal…that he was actively working against me in the hope I could be made to return to Shreveport to be a compliant guinea pig in his researches, as I found out later when I learned I was never to return to work again, never to receive a dime of unemployment insurance, and eventually…had he gotten his way…never to have gotten a favorable decision on my disabled status later on when I lost the ability to work because he then refused to report his original diagnosis to anyone, especially the Social Security Administration. But that’s a different story for a different time.
Over the next year, I tried to get back to work. Over and over. I really did my best, only to be thwarted at every turn…as I indicated, that doctor was doing all he could to hinder and harm my every attempt to restore normalcy to my life. With no income at all, including no unemployment payments since the good doctor refused to sign a simple boilerplate form required by the South Carolina unemployment office (my company’s location), I had to start withdrawing funds from my 401(k) retirement savings to pay the bills. Well meaning friends and family pressed me to just ‘make’ the doctor see reason and start helping me, but I found it a bit tough to ‘make’ anyone do anything when I wasn’t dealing from a position of power…one of those things that’s easier said than done. Besides, my increasingly dire financial straits were precisely the thing to delight the doctor, since he the more desperate I became, the more likely he thought it that I’d do his bidding.
Behind all this insanity distracting me, the MS was always busy, night and day. Like a thief in the night, tirelessly stealing my abilities from me a bit at a time, its handiwork was so gradual, so incremental, that I never quite noticed just how effectively it had done its work until the results of that handiwork smacked me in the face. Literally.
One evening late in 2006, I was talking on my cell phone when I reached out with my free hand to brace myself against a nearby door jamb so I could shift my weight from my bad leg. Just the sort of simple, uncomplicated task healthy people do a hundred times a day, only this time, the door jamb was not where I thought it was, and as I pitched through the open door when my hand met nothing but air, I discovered in that second that I no longer had the ability to just recover from a stumble as I’d been doing all my life without thinking about it. The only thing that kept me from falling with my full weight on my face were my knees happening to be the first part of my body to hit the floor first, absorbing some of my momentum, but fall on my face I did. Luckily I didn’t hit the carpeted floor straight on, but I still received the equivalent of a good strong punch in the nose. I rolled over and tried just standing up, but the ability to that had also been magically spirited away too.
In short order I discovered a whole plethora of things I could no longer just do. I couldn’t keep to a consistent schedule, thanks to the insomnia that began plaguing me about that time. Some days I’d be ready to sleep after being up for 16 hours, others I’d be up 20, 30 or more hours before being able to pass out. On top of that, my energy level was at an all time low and still dropping. Just go to sleep, friends advised. Believe me, I’d love to, it’s not a lot of fun being dead tired all the time, yet being unable to cross the threshold into sleep. I tried enough times, but lying in bed wide awake, tossing and turning, got old fast.
It felt a little like finding myself in the Twilight Zone, everything around me looked normal, but nothing was normal. All of those just things were rapidly taking longer, requiring more effort, or had become impossible to do. No matter how many of them slipped away from me, new ones were always a surprise. I remember the day I arrived at the large medical complex where my new GP’s office was as a defining moment. I had no idea where his suite was, so I schlepped across the lobby to the information desk to ask the quickest way to my doctor’s office. I was using a cane then, and even with it supporting me, my shuffling, rigid walk, swinging my affected leg in a semicircle since it couldn’t move straight forward any more, had acquired a distinctive look. To me, my damaged gait bore more than a passing resemblance to that of Karloff’s Mummy than a healthy person’s.
The pleasant looking older lady watched me slowly cross the lobby and smiled as I asked my question. “Oh, just go up that flight of stairs over there,” she replied. It was as if she couldn’t see my slow, awkward movements or even the bright blue aluminum cane in my hand. Yikes.
That was the moment I began to really think about all the stupid little things that healthy folks do without thinking but were needed for most everyday activities; not only were most now difficult or impossible for me, but many people I encountered acted like I ought to be able to do them anyway, like my ailments were temporary or even optional and I could simply ignore them. I knew better, but now I really knew better as the realization that these limitations weren’t ever going away sunk in and I internalized them. I felt a bit like Mia Farrow’s character in Rosemary’s Baby must have when she realizes that she really is being raped by the Devil after being drugged by her husband and the understanding that she’s not asleep and in some dark reverie hits her: “This is no dream! This is really happening!” she screams. I’m right with you, sister.
Soon after that incident, I took the step I’d been dreading, applying for permanent disability status and income. Any ideas about working again as a pilot, or even working at all, were wishful thinking that I could no longer afford to indulge in. I’d been knocked straight into the Twilight Zone by MS, and there was no returning. This disease plays for keepsies. I graduated from a cane to my trusty four wheeled walker the following spring, in early 2007, when my gait with only a cane to aid me had gotten dangerously unstable. I could get around reasonably well even though it wasn’t much fun, a lucky thing since it turned out that the folks who evaluate an individual’s status for Social Security expect you to act like a healthy person much of the time just to satisfy their requirements for the evaluation procedures. Just fill out this twenty page form. There’s a time limit on completing the forms, by the way, and failure to complete them is considered ‘noncompliance’ and grounds for denial although the people administering them tell you otherwise. ‘Just step this way’ was always good for a laugh, and near the end of the process in the spring of 2008, after the government had run out of excuses to deny my disability claim yet again the phrase ‘just pay your bills’ was getting to be impossible. At that point I’d had no income for over two years, my 401(k) account was gone, and I was selling everything of value I could on eBay just to keep the lights on and placate my mortgage holder. When I voiced my concerns, people regularly told me that I’d just have to be patient and wait until the government felt like acknowledging my claim.
They finally admitted that I was indeed disabled, and had been since I first applied. I could pay the mortgage again, though I came within two weeks of losing my home. I prevailed though, and finally began to believe that I was going to come out in the sunlight again. In the spring of 2010 my neurologist convinced me that I needed a power wheelchair to finally remove the hazard of regularly falling. I had sold my low slung little car and purchased the Honda Element that’s now in my garage, and my thoughts were bent on obtaining a wheelchair lift so I could get out to places and actually do something at my destination.
The fall in my living room in September 2010 when my wheelchair was only three days from being delivered was the biggest just of them all. Just one tiny event. In the space of just a few seconds, my bad leg gave out and the resultant fall left me without the ability to even hobble just a bit with support, putting me in the bind I’m in today. A wheelchair lift won’t cut it anymore. That ten feet or so from the rear of my Element to the driver’s seat might as well be the Grand Canyon. I’m all out of justs now. Whenever I hear someone suggest an idea in hopes it’ll help me, if it begins with ‘just go…’ or ‘just do…’ I cringe, already knowing that I almost certainly won’t be able to follow that piece of advice.
If you’ve read my mission statement or bio here, you’ve heard some of this before. You know that I’m pleading with the world for help solving this last obstacle that no one person or organization seems willing or able to even though I’m in danger every time I need to drive somewhere. World, I hope you’re listening. I’m not ready to go back in my box and wait quietly until I die or until what remaining good years I might have are gone. That’s one more thing I just can’t do.
Please help me escape this prison. I do try my best to maintain my composure, but I confess my fears often get the better of me. I might appear to be placid on the outside, but inside me is a trapped animal, frantic to get out of the snare.
I know we can do this together, even it’s just a dollar at a time. Help get the message out and spread the word about the guy you read about in Nashville who’s in a nasty bind, who’s never had to ask for help before but now has to…just this once.