For many individuals, change is an unpleasant proposition. Most folks generally strive to maintain stability in their personal and professional lives. Major life changes, such as switching jobs, suffering the breakup of a romantic relationship, or moving to a new location can cause tremendous amounts of anxiety and stress, and studies have shown that some major life events, such as divorce, can have a lasting negative effect on mental and physical health. The simple fact is, though, that a certain amount of change is inevitable, and quite often changes once feared turn out, in retrospect, to have been for the better.
Once, while working for a large corporation, I attended a three day symposium that focused entirely on how to deal with change from a business point of view. Since change is inescapable, the symposium leaders told us, rather than fearing and trying to avoid it, workers and organizations are much better served by anticipating and embracing the shifting circumstances that are sure to come. Sticking rigidly to the tried-and-true will sooner or later find a business, no matter how large or successful, facing an existential crisis.
Patients dealing with progressively disabling diseases like Multiple Sclerosis are often forced to navigate lives riddled with change. Some of these changes, the physical, are often abundantly obvious to the outside world. Others, the changes that occur within, which are necessitated by the patient’s need to cope with their changing physical circumstances, are often only perceived by the patient themselves, or those closest to them.
From the moment of diagnosis, change becomes a constant way of life for the stricken, and the uncertainties associated with a disabling disease only serve to amplify the anxieties felt by the patients suffering from it. The physicians call MS a heterogeneous disease, meaning that it can present quite differently from patient to patient. Be that as it may, no matter how the disease presents itself physically, psychologically all patients share a fear of the physical destruction that can be wrought by the disease, and the resulting life changes that may be forced upon them.
I can quite clearly remember the haze of confusion that engulfed me in the days and weeks following my diagnosis, a sense of befuddlement heightened by the fact that the simple act of diagnosis had forced a sudden, irrevocable change in my reality, a permanent alteration to my sense of self. Although my symptoms at that point were largely invisible, I knew that I now stood apart from the crowd, that the so-called problems that I grappled with pre-diagnosis were dwarfed by a larger one that lurked within me, one that had the potential to change my life in ways that were almost too terrible to contemplate.
Though my knowledge of MS at that time was quite limited, I knew from the moment of my diagnosis forward that my life would never be the same. Even as I vowed to fight the disease with everything I had, and consciously told myself that this hurdle needn’t be an insurmountable wall, the research I was obsessively doing to educate myself didn’t paint quite so confident a picture. Yes, many patients were able to fend off significant disability for years and sometimes even decades, but others found themselves caught in the jaws of an insatiable monster, their lives twisted in ways they once thought impossible. Deep inside I knew that waves of changes were coming; it was just a matter of how destructive they would be and how fast they would crash ashore.
Indeed, my life now, just about 10 years later, bears little resemblance to the one I lived on the day I first noticed my right knee buckling ever so slightly with every step I took. A snapshot of my existence taken just before my diagnosis compared to one taken at this very instant would reveal changes so dramatic as to be almost surreal. The path from then to now is paved with incremental changes, each following a logical progression, but as I travel down that path the sum total of those changes seems anything but logical.
Through conscious effort I’ve managed to find a measure of solace and sometimes even contentment despite the effects of the disease, but not a day goes by that I don’t find myself at least once experiencing a terrific moment of shock at the toll the disease has thus far exacted. And then the knowledge that further changes are surely coming briefly crystallizes and compounds that shock, like a sudden chill stabbing through a drafty window frame, until with effort I force myself back into the relative safety of present. There is no getting used to the situation, rather, one learns to live with it largely because there is simply no other choice..
The physical changes inflicted by my disease (which now may or may not be MS, depending on which doctor you ask) that impact my day-to-day existence result from a toxic brew of symptoms. Muscle weakness, spasticity, fatigue, and a storm of other symptoms subtle and possibly nameless combine to grip me in their own diabolical custom-made vise. The progressive nature of the illness makes mentally coming to terms with any current state of disability a difficult proposition, since without some form of intervention it’s almost certain that more losses are to come.
Some patients are fortunate in this regard, and their disease plateaus at a certain point, stabilizing their state of disability, at least for a while. My disability, though, has thus far shown itself to be a constantly moving target. Trying to throw a psychological net around it so that it can be assimilated into at least a semi-permanent sense of self has proven to be an exercise in futility, like attempting to collect soap bubbles momentarily floating through the air. Change, then, has become a constant, and my life over these last 10 years can be charted by the mental and physical adjustments made to accommodate an ever transforming new normal.
Starting at day one and plotting my course to the present, walking with a limp progressed to walking with an ankle brace, and then to walking with a cane, as the distances I was able to travel grew ever shorter. Soon after came a power wheelchair, at first only used outside of my apartment, but eventually inside as well, much to the chagrin of my apartment’s walls, doorframes, and certain pieces of furniture. Walking is now reserved for the few clumsy and increasingly difficult steps between my chair and the bed, or my chair and my computer, or my chair and wherever else my chair can’t quite reach.
Of course, mobility issues are only part of the physical damage done by the disease. These myriad physical changes have made necessary alterations to my very definition of who I am and the qualities with which I define myself, as the disease methodically stripped away layer after layer of the superficialities that, over time, I had come to believe were the building blocks of “me”. The impermanence of what once seemed to be the foundational elements of my life speaks loudly of the tenuous fragility of what most consider their reality. In fact, the only permanence I can now count on is change, and living life in a state of constant physical flux requires ongoing psychological adaptation as well.
Unlike the changes to my physical self, which have been decidedly negative, many of the psychological changes that I’ve undergone have been surprisingly positive. I’ve certainly gained a sense of perspective, as many of the problems that vexed the healthy me have been revealed to be mere trivialities. Since the disease itself appears to delight at taking whacks at me, I’ve compensated by trying to be easier on myself, though self-criticism sometimes still does get the best of me. I’ve gained a tremendous amount of empathy for the downtrodden, victims not only of disease but also of circumstance, especially if those circumstances are not of their own doing.
Above all, I’ve learned the immense value of striving to stay rooted in the present, as the now, this very moment, is all we ever truly possess. The past is but a collection of memories filtered through a veil of years, and the future a place populated, courtesy of the disease, by some potentially very real monsters. Even if the now isn’t ideal, you do yourself a tremendous disservice by not attempting to fully occupy every moment. Far more than platinum, gold, or diamonds, time is the most precious of commodities, as it is irreplaceable and grows scarcer with each passing second. Used properly, the past is a tool that can best inform us how to make the most of the present, but it’s so very easy when faced with a present that is wrought with hardship to instead use the past has a sanctuary, attempting to blot out what is with memories of what was.
Though this may provide some temporary and sometimes much-needed comfort, ultimately one must find the resolve to seek the nugget of good that always hides somewhere in the present, even if finding it requires digging through layer after layer of psychological and spiritual pain. For each of us the composition of that glimmer of good might be quite different, but reason to hope, I think, is an essential ingredient. Once this labor is done, and the nugget of good uncovered, it must be held tightly and nurtured, and carried through the next moment, and then the moment after that.
Change is never easy, and the sea of change engendered by a crippling disease can be especially cruel. It can be tremendously difficult to not get caught in its currents and dragged under, and often the more one struggles the tighter gets the grip of its tides. Rather than wasting precious energy fighting the pull of the roiling ocean within, practicing kindness to self and making some effort to accept what is allows one to let go and float along the crests of the turbulent waves of distress, instead of fruitlessly struggling while being pulled under by them. This can be the key to finding respite amidst a raging storm, and ultimately making your way to calmer waters.
Attempting action through inaction is of course easier said than done, especially when the changes are coming hard and fast and it seems that there is no time to even take a breath, but taking charge of the raging elements within to create your own internal reality is the only way I know to soothe the savage psychological goblins of progressive illness. We must never stop fighting the disease, but in order to properly do so we must consciously give up the fight we sometimes wage against ourselves, and focus our efforts instead on the very real beast at hand.