I recently went before SSA, and the “system.” I write these thoughts because an initial judgment was made based solely upon my appearance. I am 53 years old and thin. My shell appears fit and healthy. I realized that “they” don’t see me as disabled. They don’t see my symptoms, and they don’t see my daily challenges. You see, I don’t wear the so-called face of Multiple Sclerosis. Besides the ignorance that exists toward this disease, there is a stereotypic image conjured up of a sickly wheelchair-bound person.
Since 1999, I know all too well that that is not always the case. You see, I am one of the many faces of MS. Quick judgments are made from the words Multiple Sclerosis – lazy, forgetful, unsteady, klutzy, crazy moods, inconsistent, even comments like “Jerry’s kids”(?), and “getting-over” (what?). Those are just a few words and statements I have encountered that seem to be synonymous w/MS – the intangible disease. And the statement: “You look so good!” Oh, how I cringe. Can someone tell me how I’m supposed to look?
There is more to MS than can be seen by the naked eye. Scars do exist in my brain, only to be seen by MRI images. Nerves can’t be seen, and the damage to specific nerves manifest into symptoms which may be observed, but often ignored. Can anyone see the chronic pain I suffer or my poor vision? Can anyone see the difference between a drunken stagger and balance impairment? And most of all, can anyone see the damage this has done to my self-worth? When and why did I become so depressed?
I am one of the many faces of MS. I do not have a wheelchair, but I do walk the “MS shuffle.” My daily pain is temporarily relieved by medication, but the dulled pain lingers. How do you put a face on cognitive impairments? (“Where are my keys?” “What was I just going to do?” “Where am I?”) Completely blank.
Is there a face to memory loss and the overwhelming fatigue? How does one put a face for that? So, back to my initial thought . . . can anyone see the face of MS?
I am one of the many faces of MS. Don’t deny me the right to be disabled because I smile and appear healthy. Don’t deny me my right to tackle my illness with dignity and courage. Instead, respect me for my daily achievements. For others to see and judge my condition, must I fall and injure myself in order so that they can realize that I live with poor motor coordination? I can no longer process numbers and letters. I have chronic “dropsies,” vertigo and Trigeminal Neuralgia. My vision is so poor that I can’t even find my own dog (as she sits quietly by my feet). How do you put a face on these symptoms? Once, I was defined by my occupation as an RN working in the Neonatal Intensive Care Unit – a highly respected career. (Honestly, would you feel confident having a nurse like me? I wouldn’t!!) My present identity is gone, my inner core, my “self” has changed. Who am I??
I am one of the many faces of MS. I am disabled. I am managing the best I can. No one has the right to say otherwise. The “system” has torn me apart. “They” have embarrassed me, and the stress I have been dealt has exacerbated my condition. As I look into the mirror, my reflection remains the same me. I don’t look like I have a disease. I don’t look like I am anything other than a person – a person who must endure the challenges of living with a chronic debilitating illness called MS.
Please don’t question or judge me. What is, is. No fault of mine.
So, again, I ask the question, can anyone see the face of MS??
The answer is “no!” No one can see the face of the invisible monster that lives deep within my nervous system; the monster that slowly chips away at my soul, and brain.
I did not choose this disease. It chose me. I do the best that I can every day. And carpe diem on my good days. Don’t just see my shell! Look deep into my eyes, and maybe if you really look, you will see the face of my MS.
–Kim Telano RN, Atlantic Beach, NY
Diagnosed June 1999
Relapsing-Progressive Multiple Sclerosis
– See more at: http://creativecenter.msworld.org/library/ms-encounter/the-many-faces-of-ms#sthash.eUnpeqpz.dpuf