MS Strength

I’m remembering back when I lived with my friend more than a decade ago. She had a townhouse and was very mature: she also had a stable job, a mortgage that she financed on her own, a pet, a decent car—okay, she was 8 years my senior so it made perfect sense– but what I most recall about my time there was the family next door. A husband and wife in their thirties with a young son. We often spoke to the husband and saw the boy playing out in the front or back, but the wife was rarely seen. My housemate finally told me that the wife had multiple sclerosis.

I’d heard of MS and what it meant long before I developed it. Although before I began displaying symptoms, I had some preconceived notions about the disease. Don’t most people? Seems that to REALLY grasp the ins and outs a person might have to live with multiple sclerosis. So at that point in time the disease was still shroud in some mystery. Were people quickly disabled? Were there effective medications? And this neighbor barely left her home. I was a bit confused.

On Halloween one year, we (me being immature and dressed like a ghost and my housemate looking like a woman in her 30′s with a young trick-or-treater) stopped by the neighbors’ home and this woman came to the door. She was a bit slow, but she displayed no other signs that revealed her chronic, debilitating condition. And she was NICE! I don’t recall if I ever spoke with her again during my time in that townhouse. I am very close with my friend who still lives there, and she told me fairly recently that this woman declined, possibly because she had no outside or online support networks or helpful treatment options, and so her husband and teenage son moved her into an assisted living center nearby. This broke my heart: if I had known how isolated she was, and that I too would eventually have MS, I could have done more. But what do we really know about our neighbors behind closed doors?

When Bill and I moved to our home about 5 years ago, we immediately met some of our neighbors. The ones diagonally across the way were quiet and childless, like we were. The guy next door was also quiet and worked nights. I still find myself talking to him over our backyard fence in the late afternoons. Our next door neighbor was elderly and scattered, but clean and pleasant. The neighbors across the street seemed very friendly and outgoing and I found myself bonding a bit with the wife. She worked in social services. I decided to reveal my illness to her and no one else.

During a time of extreme stress a few years ago– I was beginning a disease-modifying med, in the midst of a severe relapse, and I had just lost my job— I remember my friendly neighbor calling to me from across the street to make sure I was okay. Thank you, I thought. I needed the interaction to feel less like an isolated housewife and more like a part of society. I was often by myself in MY house and I wondered what the other neighbors could possibly think about a young woman home day-in and day-out with no children.

It was about this time that I began to observe my neighbor’s husband, who was legally blind and used a stick to get around the yard. He was amazing! I didn’t pry into the reason for the blindness. Did it really matter? I would often see him ducking into a cab in the morning and returning later in the day. He was getting out and living his life and I vowed that I would follow his example. Being unemployed and on disability did not give me a license to sit back. I was well enough to still get out and contribute to society (although the recent bout with double vision gave me a healthy fear of getting back into the world.)

Very recently I spoke to my neighbor about an issue and we got on the subject of emotional counseling. I revealed to her that I saw her last name and address on my health insurance provider’s list when I was looking for a therapist to deal with my MS a few years back. I had no idea she was a clinical psychologist. She paused and said, “Jen, my husband is the psychologist. He sees patients on a regular basis during the week.” At this point my resolve increased ten-fold. This man, my neighbor and whom I knew so little about, was treating patients while at the same time coping with a serious disability. He would venture out into his yard, stick in hand, with what looked like little regard for what the neighbors thought. He sat on his porch and listened to National Public Radio. I even saw him jump in our river last summer and swim without any guidance.

I now know there is something within all of us–MS or not—that is indomitable and can thrive despite some of the roughest challenges. It is within me and it is also within you. And really: who cares what anyone else thinks!

I don’t have a great deal on my mind……about my own MS. Shoot: I think I just dangled a participle, but anyway……..My mind doesn’t automatically turn to the culprit when I’m in remission. Although it has greatly impacted my life, it still does not dictate a great deal of who I am. And this could be because I am writing from the perspective of someone with a moderate case: I am in the middle stages of middle-of-the-road, neither-mild-nor-progressive, waxing-and-waning multiple sclerosis. Ask someone with progressive MS what they think about the condition and the answer could be completely different. It’s all a matter of perspective.

My non-MS friends see my condition from another perspective: as among one of the challenges our group faces. My good friend was recently diagnosed with lupus, and so she lives with a new perspective and she has completely changed my view of my own condition: I am not the only one with ongoing problems and this knowledge opens the door from a lonely, isolated existence to one of similar understanding. I’m so glad for this. A couple of my other friends face ongoing addiction problems and so their understanding is a bit different but nonetheless helpful. One does not always need a duplicate perspective to empathize. My sister-in-law gives me the biggest laugh when our bowel difficulties— she has the autoimmune condition ulcerative colitis— act up. Two people with very different personalities can still enjoy the spoils of a shared perspective.

In terms of the world at large: I never want to imagine that my multiple sclerosis is any bigger than the dot that is our planet within our solar system, within our galaxy, within the entire universe. The perspective of Earth from a million light years away is imperceptible. In space and time, my disease is but a blip on the radar. Back here on Earth I’d rather worry about the two recent American journalists who were wrongly imprisoned in North Korea. They certainly have bigger concerns than I do. Or tread lightly when I read Eli Wiesel’s Night, and know that I am safely tucked in at bedtime. These grave views throw my own perspective into perspective.

How do doctors view this chronic condition called MS? Do they fully sympathize with patients, or do they merely look for scientific evidence and concrete solutions? Would the perspective of an MS doctor afflicted with cancer change his demeanor towards his patients? I shudder to think of that multiple sclerosis doctor who absently treated me, all the while looking at life from his own distorted angle. And yet I didn’t see life from his exact perspective (and how could I?) I am now able to indulge him his inaccuracy. As for the people who represent those with multiple sclerosis: can we come to a shared, mutual perspective? Will we ever agree on the same values, needs, priorities, and programs? Can you— will you?— ever see through my mind’s eye? Will I ever know your true intentions and hopes for a world free of MS? I cannot currently see through your lens.

Will my own image of multiple sclerosis change? Well, sure. Everything changes and angles slant and rotate. Nothing is ever exactly the same, nor should it be. The knowing is all: I set my lens wide for perspective and deep for understanding.

Joan at A Short in the Cord recently mentioned that she sought the guidance of a life coach through the Multiple Sclerosis Association of America. First of all, I didn’t even know that the hub of this association exists right in my area: Cherry Hill, NJ. Secondly, I didn’t know that anyone associated with MS was available to instruct us on what to do NEXT. I’m presently considering enlisting their aid.

I’ve wrestled with identity problems for the past five years or so, as I stopped working in my fast-paced health career (radiology) and began searching for part-time, low-stress work. I’ve had the advantage of my husband’s income to keep us from having to move in with one of our sets of parents, but in today’s world there are always more and more monthly bills, taxes, and unexpected medical expenses. So the advantage has in no way been an excuse for me to sit back and do nothing. To this day we still need whatever I can contribute (social security payments et al), and then some. I always wonder about stay-at-home moms (or dads) who elect to do this.

The search for my new career— and therefore a big piece of my identity— has been ongoing. What can I realistically do? Will I have to settle for something “just to pay the bills”? In the past (pre-social security days) I did online customer service work to help us stay afloat. But I like the right to the “pursuit of happiness” that lies within our Declaration of Independence. I’m an independent, career-minded girl who wants to pursue something fulfilling and joyful. My quest within the past five years has led me to part-time library work, which has made me so happy and fulfilled that I’ve questioned why I ever became an ultrasound tech in the first place. Like finding the perfect mate: there is a seamless fit. But because of my own long relapses, maintaining the identity of a library staff member has become all but impossible. In the past year I’ve returned to a volunteer status with our library system. It’s much safer, both physically and emotionally. I can live with it because I still identify as one who makes a difference in this public service realm. That’s what’s so great about libraries: there are few boundaries between the ranks.

On the home front I’ve sought writing opportunities, since writing is one of my biggest passions. I’ve identified myself as a part-time freelance writer who specializes in health topics. Seems to encompass my areas of interest and experience. But lately I’ve found myself looking to branch out into other areas of writing because, to be honest, I’m burning the candle at both ends with the health writings: this site and and the MS Life column. I love both, but I don’t want to soley identify myself as an MS writer, much as I don’t want to soley identify myself as an MS patient. So I’m now in active pursuit of non-health writing work. It’ll come; I just need to be more patient.

In my personal life I have a hard time identifying with non-MSers. In my safe little haven I can imagine that I’m normal and can do everything everyone else can, but when I get out into the world with those who don’t think twice about having kids or careers or non-stop days, I am sorely at a loss to identify. Reminds me deeply that I have MS and that I am at home, tenaciously looking for my own purpose. In the same vein, I cannot always identify with other MSers because we are all so different in backgrounds, disease statuses, and present situations. Although I have an easier time relating to this second group of folks. We have the common thread of navigating the frightening neurological unknown.

I haven’t a clue whether I’ll identify myself as a mother, as a successful and fulfilled writer, or as a personally-fulfilled MS patient in the near future. The road is long and winding and all aspects of life are never completely identifiable.