Lady, I do not think there is a reason for this.(anymore than there is a reason a child gets cancer) But I have faith that God would be as disappointed as am I, for the MS, if S/He noticed.

Sally,
thanks for sharing. Wannabe....lighten up!

It's interesting, the misconceptions people can have, the judgments they make. I was out on a downtown area recently with a friend. We were examining my wheelchair and checking out different aspects of it, seeing if anything needed to be adjusted.

I got up and shifted back and forth between a bench and my chair a few times as we were doing different adjustments. After a while my friend left to get something and I was alone for a bit.

I realized that a few street people were staring at me. I smiled and said hello. One of them said, "I just have to ask -- I don't understand why you're using a wheelchair at all, since you can get up and move around."

I explained that I have MS, that it affected people lots of different ways, that for me I am not paralyzed but my legs are very weak -- too weak for me to be able to walk around more than a very short distance, so I need the wheelchair, but I am at least able to transfer onto a bench on my own.

I think that's a common misconception I see all the time. People see me in my chair and assume that I can't get up at all, and they're shocked to see me stand up to get in my car, for instance, and some of them may think I'm faking it.

If they knew how my legs and stomach were quivering and the effort it took to do that! And of course I do everything I can to make everything look easy, so people don't guess how hard anything is. I stash my chair in the back of my van and then I get myself back to the driver's seat, and I want to look graceful the whole time. Hah. :-) It probably gives the wrong impression.

But when there's a chance to educate people, it's helpful to try.

I think it must be especially confusing to people if they see us using different mobility aids at different times. Why can the same person walk one day, need crutches one day, or a chair another? Or all three in one afternoon?

Just my musings for the moment. Thanks for the article. :-)

Right on Bluesky.

And confusing to us too! One day we are doing all kinds of things, the next day we are down for the count. Good of you to patiently and politely educate the starers. Its like something from a Seinfeld show.

Remember the Seinfeld episode where Jerry is making fun of his date the dermatologist who had an emergency. He sarcastically commented later about an emergency pimple or something. Then an ex patient walks by and thanks her for saving his life by getting the melanoma. Jerry looks humiliated and says, "Oh right. Cancer".

So Seinfeld and George Costanza walk by you and see you roll out to the car and then get out of your wheelchair and lift it inot the car and then walk into the car to drive away. They make all sorts of put down comments about you faking it, and then as you drive away they see a bumper sticker on your car that says "Multiple Sclerosis Sucks" and then they are humiliated, "Oh, Right. MS".

Course this wouldnt happen since most folks dont know about the variation within MS.

And, even when you think you've educated them, they still don't really understand.

That's why we all come here to BT2, because we do understand.

Hugs,

I met someone on the MSF Cruise in 2004 and she was in her scooter each time I saw her. Then in 2005, someone else was in a scooter who'd previously been ambulatory on the cruises. I was amazed to see both of them walking after the cruises. Then I remembered...I walk and used my scooter to get around the ship! Whoa! Misconceptions come from without and within.

I get these wicked whole body spasticity spasms, what I call spaz attacks, when I've been sitting for a while, These are particularly bad in the AM, when it's been 12+ hours since I've had any meds. In fact, some of my falls happen because this spasm will hit as I'm trying to transfer, and I'll slide right off whatever surface I'm trying to transfer to. Anyway, one AM I had a hair appointment, and my hairdresser, Sheryl, was struggling to get me from my WC to the hair washing station, and the spaz attacks were hitting. I was saying "don't let me fall, don't let me fall," she was holding me in the chair, and other clients back there were staring in horror. Sheryl said, "You're putting on quite a show," and we both started laughing. I assured the others that it doesn't hurt. And it doesn't. It just looks awful.

I always tell people: "It's not as bad as you imagine. And it's ten times worse than you can imagine."

As far as reasons why.... For years I tortured myself with that, and never any answers -- including spiritual ones -- that made any sense to me, just more questions. No peace, no resting, just questions generating more questions. All without answers. And then I remembered Quincey. He was a horse a friend brought me (years ago, now) for training and lessons. Then one day he colicked, and five hours later he was dead of a twisted small intestine. Later I said to my vet, "Why? Nothing changed for him, his food, turnout, no stressful work, nothing changed. Why did he colic?" Kevin, my vet, looked at me with compassion, and replied, "Chris, it happened because it could." And therein is my answer.

Everything was in line. I had the viral component (episodic viral encephalitis as a teenager), the environmental compnent (I grew up in the Northeast), and the genetic component (who knows?). And I won the lottery. It happened because it could happen, as simple as that. My spiritual system was a shambles, but at last I felt some peace with the everlasting "why."

Chris

Chris,
I really appreciated what you just said. It puts things in perspective and is so very true. Were in upstate? I grew up half way between Utica and Watertown. My parents and 5 sibs still live there. You can PM the answer if you do not want it to be public.

I grew up in Glenville, which is about 45 minutes north of Albany. Now I live just outside of Saratoga Springs. Actually, you're not far from me at all! I went to school in Rochester, at RIT. So I've pretty much always been in the Northeast -- which, as everyone knows, is God's country!

Chris

It Happened because It Could

Thanks Chris for this summation. It truly does tell the tale. I gotta remember this for the next pertinent discussion, I only hope I remember that I heard it from you.