Jun 4 (1 day ago)
Tuesday, June 5, 2012
Posted: 04 Jun 2012 01:04 AM PDT
The progression of disability brought about by progressive MS can be likened to the circumstance of a bucket placed under a leaky roof, slowly filling with water. The level of water rises almost imperceptibly with each drip; slowly but surely, however, the bucket reaches the point at which it can hold no more water, and the next drop causes it to overflow. That last drop, which sends liquid cascading down the sides of the bucket and onto the floor, is a tipping point, the moment when what was once indiscernible suddenly becomes impossible to ignore, and adjustments must be made.
Much like the water in that bucket, the level of disability in a patient suffering from progressive MS proceeds ever so slowly, invisible on a day-to-day basis, sometimes barely noticeable even week to week or month to month. This gradual progression can lull one into a false sense of security, fostering the desperate hope that maybe this is as bad as things will get. And then it happens, a moment when the bucket overflows and the disease gets its jaws around you and shakes your world like a terrier delivering the coup de grace to some unfortunate rodent, and the patient is left to process this new normal and try to make the changes necessitated by it.
I've reached a number of such tipping points along the path down which my disease has led me: The time at work when my "dropped foot" caught on the hallway carpet and sent me into a stumbling, flailing, long-distance attempt to keep my balance as I lurched forward, almost landing in the arms of none other than Tony Bennett (I worked in one of the major audio/video production houses here in NYC), an incident that convinced me of the need to get my first ankle brace, which I'd been vehemently resisting up to that point; the moment when it became clear that simply getting to work was taking so much out of me that it was negatively impacting my health, and I applied for disability; the day I realized that I could not walk anywhere, even in my apartment, without holding onto the furniture, a wall, a doorknob, or some other stable object, and I caved and ordered my first cane; another day some year or so after that, when, at my wife's urging, I finally admitted that even with a cane I could not make it more than about 100 feet, and I reluctantly started the process to purchase my wheelchair, an act that at one point had been almost unimaginable, the stuff of nightmares.
Each of these incidents was preceded by a period of relative quiet, when I went about my usual business, however restricted that business might be. As my right arm and leg weakened, my left side took up the slack, and even though I am a born righty I learned to use my left side rather adeptly, even training myself to be a passable lefthanded chopstick user, a very important skill for a fan of all foods Asian. In retrospect, I did notice some of the incremental changes as they were happening, and sometimes even voiced concerns about them, but since these tiny deficits didn't force the issue, I could halfheartedly convince myself that I was just having a bad day, or maybe I'd slept funny, or perhaps I'd caught a little virus or cold that was weakening my system. Inevitably, though, the time came when the bucket overflowed, and some new tools, both emotional and mechanical, were needed to clean up the mess.
I recently experienced yet another tipping point, one that I'll admit has been more than a little unnerving. One of my favorite wheelchair journeys has been a trip to Central Park's Conservatory Gardens (click here), which are located about as far away from my apartment as you can get in the wide expanses of the Park, requiring a round-trip journey of about 8 miles. The gardens are a treasure, and a fair number of the photos included in my "Wheelchair Kamikaze Photo Gallery" were taken there.
Because my wheelchair can travel quite fast, 8.5 mph, I was able to cover the distance from my building to the gardens in about 25 minutes, and indeed the chair has allowed me to explore parts of the Park that many of my walking friends have never accessed. I took great pleasure in my jaunts to the gardens, not only because of the beauty of the destination, but also because, in a sense, they showed me and my chair to be more able than disabled, at least in certain circumstances, and actually earned the envy of some of my able-bodied friends and family.
I had last visited the gardens sometime in late October or early November 2011, when they were ablaze in a natural fireworks show of multicolored chrysanthemums and autumn yellows, reds, and oranges, the chill in the fall air making my journey there all the more bracing. Last month I attempted to make my first trip of 2012 to the gardens, eagerly anticipating the springtime visual fiesta that was sure to await me and my camera. While traveling full throttle through the Park, using my "good" left arm and hand to manipulate the wheelchair's controller, I noticed a strange sluggishness in my fingers and hand. When I arrived at the gardens, I took out my camera and set it up on the tripod mounted to the arm of my wheelchair, and started taking some photos, but for the first time experienced some real difficulty manipulating the controls of the camera. Still, choosing willful ignorance, I forged ahead, snapping pictures and scooting around the beautifully landscaped setting.
I soon needed to change lenses, and that's when the real trouble started. I had an unusually hard time taking off the lens that was already mounted to the camera, and in doing so dropped the lens, which luckily landed softly in my lap. I grabbed for the lens as it fell from my hand, though, and in doing so my wedding ring flew off of my finger, bounced off the chair, and landed deep in some bushes or flower beds. I spent the next 45 minutes using my cane to shake the shrubberies and gingerly poke around the flowers, but to no avail. Hard as I looked, I just couldn't find the ring. As daylight quickly faded, my heart sinking, I finally had to admit that the ring was lost. Yes, a wedding ring is only an object, and even though it had tremendous sentimental value, it can be replaced. At that moment, though, that ring represented so many other losses that my wife and I have suffered through the years courtesy of my disease. I was diagnosed only one year after Karen and I were married.
Deeply saddened and cursing the universe, I gave up my search and started the trek home. My left arm and hand were growing less responsive with each passing minute, making it difficult to control the wheelchair. When I finally exited the park and headed down the city streets to my apartment building, my hand decided all on its own that it didn't like the direction I was traveling, and I swerved right into the side of a building, hitting it with a clattering thunk. Luckily, no damage was done to either the chair or my body, but the message was unmistakably clear: my left side is falling victim to the disease, just as my right side did, and the ticking clock that I share with all who suffer from progressively disabling disease grew exponentially louder.
I won't pretend that I handled this incident with bravery or grace or heroism. It shook me to the core, and was the source of heart wrenching dismay and a good long bout of soul-searching. This time there is no magical piece of medical equipment to help me adapt to the situation, my new normal can only be countered with attitude and acceptance. In reality, my situation the day before the incident and the day after hadn't really changed, only my awareness of the circumstances were different. The enemy known is better than the enemy unknown, and at least I can now say with certainty that my left side is weakening, a fact that had been unable to be confirmed by previous physical testing. On some level, I've known this reality for several months, regardless of subjective test results. Nobody knows our bodies better than ourselves, and we notice incremental deficits far in advance of them being obvious to outside observers.
I now have to resign myself to the fact that my wheelchair trips can no longer be open-ended, restricted only by the juice left in the chair's batteries. I have to be aware of the limited functionality in my left side, which gets worse as the day wears on, and allow myself to rest when necessary. My left leg is also noticeably weaker, making it harder to compensate for my useless right side, so I'll need to be all the more vigilant when standing, taking a few steps, or showering, so that I don't tumble to the ground. This is the hard truth of the situation, and no amount of wishing, hoping, moping, bitching, complaining, cursing, or sulking is going to change that.
I will do my absolute best to operate within the confines of this new normal, and will not be defined by what I can't do but by what I still can. I might not be able to travel to the far reaches of Central Park, so instead I'll have to explore the many acres closer to home, some of which I've overlooked because of my ability to travel far and wide. I won't stop taking photos, I'll just have to be more diligent about setting up the camera and manipulating its controls; perhaps this will lead to a more disciplined approach and some better photographs. I've also having issues with increased levels of MS fatigue, which can be just as disabling as weakened arms or legs, so I'll work with my body instead of fight against it, and understand that in my new normal "carpe diem" might sometimes mean spending a day or two doing nothing but catching up on missed movies or shows about ancient aliens on the History Channel.
I'll continue to vigorously pursue treatment options with the physicians working on my case, and will be an even louder self advocate than ever before. New treatment options seem to constantly present themselves, and I'm currently trying two or three outside the box approaches that may be longshots, but every so often longshots come in, and when they do they bring with them great rewards. Most of all, though, I will focus on each passing moment, occupying it consciously and as fully as possible. The only thing that can be done about past regrets is to learn from them in order to live a more fulfilling present. The future is a great unknown; some people who are perfectly healthy today will be dead tomorrow, and if life has taught me anything it's that our paths are made up of nothing but blind curves. I'll practice kindness to others and, perhaps more importantly, to myself.
I know for sure that there will be more tipping points in the future, but I also know that they don't necessarily have to be negative ones. With due diligence and some good luck, perhaps my next tipping point will be a positive, liberating rather than confining, and my next new normal will be a return to an old normal. Tomorrow's story has yet to be written, and yesterday's setback may require adjustments, but does not necessarily have to be a harbinger of things to come.
Time to get a new bucket, and to keep on trying to figure out how to fix that damned leak.