Who Are The PWMS?
 

I have no idea who wrote this, or I would give them credit. Kinda says it all..huh?
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Who are the people with Multiple Sclerosis?

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 handicapped parking.

We are the folks who may not be able to get out to the Church or toTemple 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, class, financial, educational background, language or religion.

We are both able to walk unassisted and use canes and walkers and wheelchairs; we jog and swim and partake in sports; we are house-bound, 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 it 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 Every person. We are the People with Multiple Sclerosis. We are People, Just Like You....

Sad but true, yet inspiring.

Virginia Sanchez

http://ginnysanchez.vox.com/library/...-an-oldie.html

It took me less than a minute to find out and give credit where it deserves to be. :)

Nice of you to do that for SallyC. It's good to have a resident Computer whiz.

By the way SallyC, its good to see you feeling a bit better. I always enjoy your posts.

Thanks Wannabe for finding that for me. You're a gem. We might keep you around.:D :D

Thanks BBS, I am feeling better and still on Paxil too.:rolleyes: How are you doing, Dear?

Pretty well. In a very minor flare today (mild L'Hermitte and leg buzzing).

I like the big paragraph you posted above :) I'm glad the Paxil is helping you out. What would we do without chemistry?

"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 Every person. We are the People with Multiple Sclerosis. We are People, Just Like You...."

I laughed at this first part -- wryly, it's true, because although it's funny, it's also true. And then tears came to my eyes as I read the second part.... And I flashed back to just this morning, when I was lying on the floor and weeping with rage, because I knew I had to call Lisa for help, and I wanted to get myself up, I didn't want to need that help, I wanted to do it myself. The WC was a foot away, but it might as well have been a hundred miles. And just lately, I've caught myself thinking: I don't want to die. But I'm not sure I want to live this way.

I hope my avatar came through. That's me in my former life, riding Magic Hero at a horse show at Ox Ridge, in Darien CT. That was in 1990, the year before I was dxed.

Chris

Hi Chris, I love your Avatar...Beautiful and so graceful. That is probably the biggest loss for me too...The Art of Being Graceful..:( <sigh>

I am so sorry you found yourself ina helpless situation. I've been there at my weakest point.

We all know what you are dealing with. After all, "We Are The People With MS".

Welcome, so nice to have you here.:)

Hugs,

Thanks for posting that, Sally.

Hi Chris, and welcome to the board. What a great Avatar!

Yeah, it's a big change we go through, and a huge challenge sometimes.

((Chris)) I try to keep my faith that there's a reason for this, and that it will somehow benefit me and others in the long run. Easier said then done sometimes though.

Day by day.... :)

Cherie

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. :rolleyes:

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. :D

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.:cool:

Chris,
I know Glenville. Went to college in Albany. And BBS is correct. It was a great summation.

You went to Albany State? Wow. It is a small world. My mother got her Masters there. After I got my BA from Skidmore I wanted to go to AS, but health issues intervened. Another casualty of MS.

Chris

Nope... Albany Med for nursing then took some additional courses when we lived in Houston and finally, in the 90's went back and got my degree in Gerontology from URI when my girls were in college.

Who Are The Pwms
 

Cherie,

When were you in Houston??? :eek:

spoons

Fall of 1973 to winter of 1978.

Who are the PWMS?
 

Cherie,

I had no idea! Where did you go to school? Where did you live?

spoons

In Houston? Montrose, Alief and Bellaire. Rice for School with some classes at HCC

Yes, Thanks Chris. What a great explaination and answer to the never ending question. <Applause>

Cherie,

This Is Tooooo Wierd! I Moved To Houston In '72 And Got Married In '78 - We Lived In Alief Then! It's Horrible Now.

Luv Ya,
Spoons

I know. David and Heather went down for the Habitat Blitz build in 1998. First time she'd been back since she was born. I went down for the weekend to stay with friends and could not believe the change. The house we lived in when we were first married has been leveled. Several of the houses inhabited by our community are gone. The church where we were married (very white when we lived there) is now a combo of Hispanic and Vietnameese. David said the parking lot no longer accommodated the parishoners and now there were pick up trucks parked all over the lawns.

We used to eat at the Hobbit Hole (on Alabama?) and it was still there and the food quite similar. Winchell's Donuts and Hamburgers by Gourmet were both gone. The clinic where we worked on Taft and West Gray is now owned by a not for profit group and is covered entirely by murals. Lots of changes.

Last weekend while visiting family my twin brother (10 years younger) was sitting in my new wheelchair. I was in the old.
He was zipping back and forth w/a grin on his face, talking. Out of nowhere he said, "Geez this must suck."

"Sure does, kid."

He has always known it does.
Now he wants to go to a very public place where noone knows him and roll around for a couple of hours. I think thats great. We'll split up and he'll get a taste of the things that happen. And compare notes.

And maybe we'll mess w/a few minds.:D

"He'll get a taste of the things that happen . . ."

Oh, such a seemingly small statement, and it is sooooooooo loaded, Renee. Every single time I am out. Yes, it would be interesting for him to get a taste. Although of course he'll then just get up when he's done. :-)

By the way, how *is* your new chair?

I am still waiting for the new chair with power assist wheels for which I have been waiting since February. (Yes, February.) A few weeks ago I did get a new used chair which has been fantastic -- a Quickie 2HP -- but I really badly want that power assist.

Did you go to Haight-Ashbury?

I got the e-motion power assist & new quicke the day before the trip. Actually convinced the airline to fold and stash it in a closet.

It is the cats pajamas!!!! The whole thing may be 15 # heavier but no problema. There are two main settings with several in between.
I keep it at low. It is positively possessed at high. Finally moving at the speed of me.
I cried when I got it. I was dancing.
It was so graceful.

The battery holds a normal days strolling needs for me. I took a couple of SF hills no sweat. Companion was nearly hospital bound.
One week in the area was not enough but there is soooo much to see and do and EAT. Cruised(drove) through Haight Ashbury. Wanted to go into a Medical mj parlor but I don't think companion was game.
Another time. hehehe.

I never used public transport but it looks very wchair friendly. (No streetcar access though, oh well)

SF is $$ for a person needing an accessible room. Checked out the AYhostel near fishermans wharf. They have a couple of private rooms. Flat area facing the water and Marin County beyond. OOOO, I could do it.

My little bro is quite a guy. He has given up a lot of a normal life to live w/my mom and keep her out of assisted living which would do her in quickly.
He lives with her wheelchair life and his profession has him advocating for elderly, physically disabled and (unPC) short and long run lunatics.
He gets IT as much as anyone can. It would be a big kick playing wheelchair w/him. We are really a good kind of BAAAAAD together.

Thank God he can stand up and jog, hike, ski, skate,swim, lift weights.
You are going to dig the assist. HOckey, anyone?
And really, High Speed is like a chair demonically POSSESSED!!!!

CHERIE,

REALLY DON'T KNOW WHERE TO GO WITH THIS! :confused: I AM SHOCKED!:eek:

SPOONS

Spoons,
I don't understand....what confuses and shocks you? And why does it need to go anywhere? What am I missing?

CHERIE,

I'M TALKING ABOUT THE PAST (YOU LIVING IN HOUSTON, ETC.). I SHOULD LEAVE WELL ENOUGH ALONE. :rolleyes: :confused:

SPOONS

What's wrong with living in Houston 30 years ago? Could be fun to compare notes but it almost sounds like you think it is not a good thing!

CHERIE,

I DON'T WANT TO BRING UP ANY BAD MEMORIES FOR YOU. :confused:

SPOONS

Are you OK Spoons? It sounds like Cheries memories are good ones. It's the town that changed. That only shows that you can't go back.

I am still in a suburb of the town where I was born. There is, almost, nothing the same here. Everything changes, but our memories stay intack.

It's all Good, (((((Spoons))))))

SEEMS LIKE SOME ON THIS BOARD THINK I'M "YELLING" BECAUSE I USE ALL CAPS. WELL, YOU SEE, I CAN ONLY TYPE WITH ONE FINGER :( :( BELIEVE ME, YOU'LL KNOW WHEN I'M YELLING :eek: :eek: :eek:

SPOONS