MS: What Will the Neighbors Think?


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!


9 comments

  • This post sparked a memory. A few years ago, I was still working and was battling fatigue. It was summer and the grass needed to be cut and the weeds were out of control. Carol, my neighbor across the street, recognized that something was wrong. She volunteered to help me weed. Another neighbor told me with too much glee that Carol had asked if anyone knew if I was okay because the yard looked so bad. When I told this catty neighbor that Carol was going to help me because I was sick, she was shamed!

  • Wow, is about all I can think of to say in response to this. Jen, this speaks volumes!!

  • Jen

    I think it’s hard because we often LOOK fine and sometimes I feel it would be mentally easier (for me)if I showed some constant, visible impairment. Just something odd that goes through my mind when I see some of my distant neighbors who don’t know me very well.

    *Now I try to see myself as a thriving, productive freelancer who sparks envy in the eyes of the 9-5er’s. Hehehe… 🙂

  • Thanks for sharing this story. I am blessed to have such wonderful neighbors. As you know we live in snow country and my hubby travels alot. My neighbors all shovel my really long driveway, porch and walks for me. One day I opened the door to thank the person shoveling my porch. To this day I don’t know who it was with the hat and coat on. He just said he was my “snow elf”

  • Chuck

    Jen, I just can’t help thinking about how it was back in 1991 after my wife was diagnosed. We didn’t know if we should tell people, family, her work. We just didn’t know.

    Well we decided to tell everyone. Her work was probably the worst. Not that they wanted to get rid of her, they were afraid that they would have to do things different for her. They didn’t. Every time something wentwrong or she forgot something, the standard line was, (and still is) “HEY leave me alone, I HAVE MS!” I applaud you for you courage and strength.

  • Jen

    Thanks, Chuck. I applaud your wife. I had very supportive coworkers when I was diagnosed (although I was down to part-time work at a library, so it could be the low-demands position I held.) I think it’s hard to account for being young and– often–invisibly disabled.

  • Great story. I get judged a lot in my new home, filled with people over 80 who rather die than be seen with a cane. They don’t know I have MS, not that I don’t tell anyone I can and even had a write-up(you know me) in the newsletter here. But, I can’t waste energy on their negative thoughts. I may be in a power chair but I will NEVER be as old as they are. (spiritually) We do have a community here though and many are wonderful, kind people—my family. Our neighbors should be our family. We should all be family. I have NEVER been ashamed of my MS, it is me and I love me. (What’s not to love?)(hahahahahahaha)

  • Thx for the great storytellin’! Loved it!

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