Never Let It Show - My Life With Multiple Sclerosis
Joyce A. Moore
While I have not been "home" in many years, I hail from Brooklyn, New York where the cultural mores governing an individual's weakness are so stringent, even US Citizens need a passport to prove they are tough enough to cross the Bridge. My sense of personal brevity was also colored by my father who as a young boy grew up during the Great Depression. He spent his childhood on the docks scavenging what work (and sometimes food) he could amongst neighborhood gangs and rough-and-tumble Longshoremen. Ergo, even as a very small child, I knew, if I wanted to survive, I had better learn never to let it show, no matter how much it hurt.
In addition "never letting it show" has served me well, and not so well, all at the same time.
After following a convoluted, seven-year journey, visiting many doctors, receiving numerous prescriptions, and finding little relief finally I am diagnosed with Relapsing-Remitting Multiple Sclerosis (RRMS). Many of my peers were devastated upon first receiving the news, and understandably so, but for me, the MS diagnosis was the most healing. Although it is not to say, I was not devastated initially following the confirmation of the diagnosis. However, once the clouds of shock and disbelief parted, the light of understanding illuminated the past, present, and future. I no longer felt entrapped in an endless web of misdiagnosis and a corresponding sense of helplessness. Instead, I felt freed into a future of empowerment where I could at last call the disorder by its name, and thus gain control of my life.
For me, the experience of MS is one of great heat. What I mean to say is, besides tingling extremities, flashes of topsy-turvy vertigo, sometimes incapacitating muscle spasms, I am also too familiar with widespread neuropathic pain, which can and does manifest as a searing burn everywhere and anywhere throughout my body. It is here that the ingrained -never let it show- comes most into play. While there may have been some misinterpretations of data on behalf of the medical community, I certainly must accept responsibility for understating the extent to which I experienced any or all of these symptoms.
But that was then, and this is now, and in the present moment is a clearer understanding of what is happening inside my body, making both the symptoms and pain more manageable, if not more endurable. They say "knowledge is power" and I now know first-hand the truth of this proverb; and not letting it show no longer seems as important as not letting MS define me.
Surely, any definition of me must include some aspects of MS, but MS need not be a personal demarcation that limits where I can go, actually or metaphorically, or what I can accomplish within my lifetime. I find my life much more abundant than any perceived restriction, or preconceived notion, of what it means to have this disorder. Truly, it was much more frightening not knowing what was troubling me so, than it is to be determined to live despite what troubles me, and it is in this sense, I had been healed.
These days I try not to look back, except to send blessings to those who may have missed it, and then I quickly turn my attention to the present moment where I can see I am the one blessed with medical expertise, technology, and proper medication. Unencumbered by what had previously been ignorance of the facts, now came relief and determination not to allow my life be doomed. I am still me, with the same likes and dislikes, the same talents, same faults, same strengths, and weaknesses, the same hopes, and the same dreams as before receiving my diagnosis. There is nothing in this Universe, especially not MS, which can change who I am.
My husband too has felt a release from past uncertainty since my diagnosis. While sharing the same initial astonishment and disbelief, he now has as many "Ah, ha" moments as I do, as we both learn more about MS and the ways it can manifest and be managed. Unless one is very alone in the world, without family or friends, most MS patients I have spoken with recognize the various ways their own disorder effects and/or affects those with whom they share life's journey. Where I maintain my pseudo-pride thinking I am mistress of "never letting it show", truth is, no matter how much make-up, or how great the hairstyle, or how new the clothes, my husband can always see the pain reflected deep within my eyes. In this sense he, too, has come to know and feel it on a level that makes it very much his own. Pain truly is a family affair, but it need not be an all-encompassing affair of any one family. My marriage, as life itself, is more dynamic than any disorder that may try to inhabit or inhibit us. In addition, here, too, we are the same people now as before the diagnosis, with the same memories of the past, the same hopes, and plans for the future, the same petty and important quarrels that erupt in the present moment.
I guess it is important to remember, no matter what we face, never give anything more power than it truly has, and for me, MS is powerless to change a single, integral, thing about me. It cannot change who I am as a wife or lover, as a mother or a friend, as a very human pilgrim traversing the many paths of single lifetime. Yes, I have MS, but it will never have me. No matter how much it may hurt at times, or how much I continue to try and not let it show, it can never be greater than the sum parts of me ... nor can it can ever thwart its unintended gift of healing.