Ginny Otte

I am posting this in the hopes that readers will see it, read it, remember that they heard it from me, and NOT email me links to it 8,000 times. :-p But apparently, one day I may once again see out of both eyes, and some of the damage in my noggin due to MS may be reversable.

I do not know this lady. :) I've seen my "Who are the people with Multiple Sclerosis" reprinted all over the internet (and occasionally the "real world")...but I've never seen it performed on YouTube before:

Long-time readers may recall that I've imparted the story of how a song in the rock opera "Jesus Christ, Superstar" reached me at just the right moment in my life, and actually changed my outlook on my then-new diagnosis of Multiple Sclerosis. I'll spare you on the gory details, but I was at my lowest point post-diagnosis--at my physically and emotionally lowest point as a 28 year old woman. One rainy day on the way to the neurologist, I heard this song and it actually inspired me to keep on truckin'.

I saw "Jesus Christ, Superstar" on TV recently (probably because we're nearing Easter) and I was reminded once again about that day as a 28 year old lass on a rainy day, facing an uncertain future. While watching the movie my husband and I wondered what the cast members went on to do post-movie, so we hit up the Internet Movie Database afterward. From there, I was able to find Ted Neeley's new website and decided that after all these years, I'd write to him and let him know how wonderfully that song had touched me, all those years ago. (hey! DJs can be fangirls too!)

So now I want to know--what thing, song, movie, book, person or experience left a lasting impression on you in your life, inspired you, or gave you the incentive to carry on? The responses to my last post were very interesting, and I'm sure you will have equally interesting stuff to share with me on this topic.

...and for those of you who are curious as to what song I've been talking about, here it is (thanks, internet!):

I was discussing my vision earlier today, and a lightbulb went off in my head: "Hey! that would make a semi-interesting blog post!"

So here we go: I'm partially blind in my right eye from optic atrophy, caused by retrobulbar optic neuritis. For the most part, my brain ignores what my right eye sees, and I only see what my left eye is seeing. In bright light, however, my brain combines the input from both eyes--which is annoying. I combat this by wearing sunglasses when I go out on sunny days.

Here's a visual of...well, my visual:



So now you know. So tell me...what's screwed up on you?

Recently, I was contacted about "Who are the People with Multiple Sclerosis?" once again, so I figured I'd dust off the old gal and put `er here; it's still being passed along but somehow, my name has been taken off of it ("I don't know who wrote this, but I thought I'd pass it along...")

I wrote this nearly 11 years ago now, and it's appeared all other the internet, it's been reprinted at MS support chapters across the US and Canada, it's been translated and printed by MS support chapters in France, Germany and Israel. In other words, it's travelled farther than I ever could. I had no idea anyone would even like it when I wrote it. I'm very pleased that people do like it, and that they pass it along. I always simply ask that if you like it, leave my name attached as the writer. I've got an ego to soothe, you know.

Who are the People with MS?

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....

Ad execs and the media would have you believe that most 23 year old women subscribe to People magazine, In Style, and other assorted gossip and fashion magazines. My 23 year old daughter subscribes to Psychology Today and Scientific American. I like that; it gives me something of substance to mull over while I'm trapped on the toilet.

Anyway, today I was reading her copy of Scientific American; an article my husband found and handed to me. In it, a scientist says he discovered that while 50% of the global population has had Chicken Pox, nearly 100% of people with Multiple Sclerosis has had the Chicken Pox, and that the patients he's examined had parts of that Chicken Pox virus active during an attack of MS--even decades after they'd recovered from their Chicken Pox infection.

Now, here's where my unscientific mind starts going batshit:

This guy has found a definite coincidence between the Chicken Pox and MS. Alternately, we now have a Chicken Pox vaccine for children so that they don't get this childhood disease. Only part of the chicken pox virus gets activated in people with MS; but still, it's active.

A person has only a 50% chance of getting the Chicken Pox. If you start vaccinating everyone against the chicken pox, then 100% of people will be exposed to it.

Doesn't that double the average person's chance of developing Multiple Sclerosis? In vaccinnating a child against this a common childhood disease, wouldn't you be inadvertently exposing them to an increased possibility that they might get a very serious, chronic illness as an adult?

Someone explain this to me. I have a headache.

I have been having trouble:

--typing
--talking
--walking
--thinking clearly
--keeping my sense of balance

...All day now. IT HAD BETTER CLEAR UP in timefor my Sunday gig at WGHT, dammit.