Friday, June 10, 2011

We are you + MS

Great letter I came across this am. (Original post)

We are your parents, your children, your brothers and sisters; we are the person down the street; we are that lady or fellow who may walk a little 'funny' at the grocery store. We are the people that you "tsk, tsk" over because we might look "too good" to use a handicapped parking space. We are the folks who may not be able to get out...... to the Church or Temple every weekend; we are your peers; we are human beings.

We are the face of Multiple Sclerosis. A face that is nearly every ethnicity; that comes from nearly every country, that does not discriminate by social standing or class or financial or educational background or language or religion. We are both able to walk unassisted and use canes and walkers and wheelchair users; we jog and swim and partake in sports; we are housebound, we use scooters; we need respirators. We are everything in between. We are visually impaired and we are not. We are at every level of physical ability.

Of course, we "look so good" while we're doing it. We hear that phrase every day of our lives. Sometimes that phrase is meant as a compliment and sometimes it is meant to hurt or meant to shame us into doing something of which we may not be currently capable. We may be able to do that something tomorrow, though, or next week; Multiple Sclerosis is like that. We are like that.

Some of us are hearing impaired; yet all of us occasionally have people talk louder to us. "HOW ARE YOU D-O-I-N-G????" they'll scream, speaking to us as though we were either hearing or intellectually impaired. "YOU LOOK SO G-O-O-D!!!!"

Of course we do. Thank you very much. We are, in fact, the very best looking people in the handicapped community. We have secret beauty pageants every year, to decide which of our number is the absolute best-looking. Billy Crystal emcees, as his character Fernando; "..and you look MAHVELOUS my dear; absolutely M-A-H-V-E-L-O-U-S..."

We are brave. We are fragile. We want to live, and we want to end it all. We look for support and we want to stand alone. We are Everyperson. We are the People with Multiple Sclerosis. We are People, Just Like You....

I didnt write this but the words say everything.


  1. I've actually had people inform me--not ask--that I'm obviously doing so much better because I LOOK GREAT. This is usually when I've been barely able to scrape myself upright long enough to make dinner.

    On one of those particularly bad days recently I found myself on the receiving end of some serious hate from a woman in a parking lot over my blue permit. Unreal. I only recently, finally, got that permit and it's made a huge difference in my life. I'd heard the stories, but that was my first blatantly bad experience. I suspect it won't be the last. It's made me feel afraid to go back to that place.

  2. You shouldn't let them get to you. Continue on! When people are ignorant of the facts they always act like ass's. To put it bluntly, people don't think and are very self absorbed in the general public. Sad but true.

    Keep your head up high!

  3. Thanks Dave. I just get so tired of feeling like I have to defend myself. It's exhausting enough to go out and do what needs to be done, but then to have people nearly spit on you because they don't think you look impaired enough. . . Intellectually I know I shouldn't care, but it does get depressing. At any rate, I like your blog. I discovered it not too long ago. I hope you're still having positive results from the CCSVI procedure!

  4. I was talking to my wife about comments from my family and people I know the other day. I always get the "you look great"......."things must be going great". Today in fact I had a person come over I haven't seen in months saying the same type of thing. I really think people don't know what to say and they make some general statement like you had a cold or the flu trying to appear thoughtful. Sometimes (actually all the time, lol) it might be better for them to not try.

    We all need support and what a better place to get it then a fellow MS'r who understands. Its hard for anyone who doesn't have MS to understand what you are going through. Even the people that try the hardest just can't get there.

  5. Oh and I am feeling great!

  6. It's true--it takes personal experience to get it. And I do think people just feel awkward and don't know what to say. It's conversation filler that sounds polite. As you say, it might be better for them not to try! Heh...

    I'm actually quite relieved to finally have a name to put to what I have and have other people to talk to about it. It took 10 years until I finally got the diagnosis last Dec. A neuro even once told me I had a "fantastical imagination"! (Yes, neuros are not my favorite people either.) Maybe it's time to try a vascular surgeon . . .

    Speaking of which, I'm glad you're doing well! And I'm so glad there are people like you writing about their experiences with the CCSVI procedure. No matter what the individual outcome, it's so important that people's experiences are being documented.