I had an illuminating moment a few years ago - one of those things that just sticks with you forever.
I was riding a paratransit van, and on the van with me was a young man in a wheelchair. He was thin - so thin that I couldn't have told you his age. Twelve? Maybe. Twenty-two? Possibly.
His arms were strapped to some kind of board on the front of his wheelchair, and a note was taped to the side of the chair, listing his name and home phone number.
During the trip, he started crying. Deep, racking sobs... he sounded like he was abjectly miserable, and it was heartbreaking.
I couldn't get up because we were in a moving vehicle, but I called out to the driver "would you please pull over and check on him, and see if there is something wrong?"
The driver told me that we were almost to the young man's destination, and that it would be okay. I listened to him crying for a few seconds more (it felt like an eternity) and finally I said "How much farther is it?"
The answer was incredible, at least to me. He said "We're less than half an hour away."
Half an hour?? Are you kidding me? He was willing to just drive on and let this person, this human being, sit and cry until we got there, without even trying to find out why he was crying? This driver, like far too many of us, was more than happy to just ignore the young man's pain, and pass the problem on to someone else... but I wasn't.
One more time. I said, politely but firmly "Please. Pull over NOW, and check on him! There has to be something wrong!"
There was. During the trip, one of his arms had come loose from the straps, and it was bent behind him, at an odd and uncomfortable angle. I couldn't see it from where I was, but once we pulled over, the driver was able to see the problem and fix it very quickly, and we were on our way again. The young man's sobbing tapered off to sniffles and whimpers, and then stopped altogether.
How hard would it be to go through life without the ability to tell others what's wrong? How difficult would your life be if you couldn't say "Hey - my arm is twisted behind my back and it hurts"?
I have times like that... short episodes, comparatively, so I understand a very small amount of what this young man goes through. But what I took from this episode was something completely different.
For the first time, I was on the other side.
I have paralysis attacks. I don't fall down, I don't turn purple or spew any bodily fluids, and my head doesn't spin. I just can't move. Sometimes they last for a few minutes, sometimes they last for hours. I'm used to them, and so are those who are close to me. They know how to deal with it, and we crack jokes about these episodes. My son, on hearing I was going to a conference to discuss this disorder asked me "What are you going to do for fun? Play statues?" We made up a whole list of events to have at the conference, and I shared it with my fellow attendees - they got quite a kick out of it. Trust me, you have to have a good sense of humor to deal with something as rare and bizarre as this.
But I had never, until now, seen it from the other side.
Sitting on that van, not knowing what was wrong, or what to do, I felt so damned helpless. And I finally realized how it is for other people, the first time they see me paralyzed and don't know how to react. It's a scary feeling.
How do you know what to do in a situation like that? Do you just walk away, hoping someone else will deal with it? I can't say I blame those who do... but I can't do it. I can't walk away, because I have experienced the pain and frustration, the fear that nobody will do anything, and the horrifying possibility that I'll be stuck there for hours in a painful position.
Last Sunday, in a room full of people who share my odd disorder, and facing five doctors who are the leading researchers in the field, I became paralyzed. And nobody knew it. Even the doctors and those who suffered from what I have didn't know what to do for me, because each of us is slightly different in the way our bodies express the disorder. If they didn't know what to do, how can I expect complete strangers to understand?
Answer: I don't. So as often as I can, I tell people what to expect, and how to react to it. What more can you do? But I try to deliver the message with humor, because I don't want to put anyone else in the position I found myself in a few years ago - of feeling so helpless that it hurts.
Which brings me to this: How do we deal with those who are disabled? What do you do when someone needs help and you don't know how to help them?
I think part of the key is willingness - being willing to help, even if we don't know what needs to be done. The willingness to ask, to look, to find out what we can do. And the desire to help, even knowing that some people aren't going to be grateful for that help. There will always be that one person in a hundred who will gladly sue you for caring about them. And if that is enough to scare you away, so be it. I can't blame people for being afraid of that.
But therein lies the problem - those who make it difficult for all of us to help each other; to act like caring and compassionate human beings for fear of a lawsuit. But I can't help myself. I'm not willing to stand aside and see someone in pain just because they might sue me. I'm going to be careful, yes... but I'll still at least try to help, because I've been on both sides of the equation.
If someone tried to help me, I wouldn't sue. Now if their idea of "help" was to throw me down a flight of stairs... then perhaps we would have to have a talk, but... how can I not appreciate the courage and compassion of a stranger who is willing to take time from their day to help?
But I've learned a few tricks along the way. If the person can't move or talk, just asking them questions does no good. If they are awake and aware, but can't speak - ask them yes or no questions, and request that they answer by blinking - one blink for yes, two for no... whatever works. If their eyes are closed, but they are conscious, you can put your hand on their cheek and ask them to clench their jaw once or twice. Even at my worst, I'm still able to communicate that way.
The point is to try. Something. Anything. And if you can't figure out what to do, call 911. Because these are our fellow human beings, and they matter. Don't let that feeling of helplessness or fear stop you from remembering that.
And understand this: Just because you see me in a store with my arms curled up behind my back, or twisted and jerking in an odd way... I'm still a Kossack, still a human being, still a Mom, a grandmother, a friend... I might look funny, but I'm no different at my core than anyone else. Hey... we all have our issues, don't we?
So if you see me walking funny - feel free to look. I know it's strange. I know you're just curious, and that you mean well. I've gotten used to being the odd duck. And I know that some look because they wonder if they can help - that's what I do, when I see others in strange situations, or walking funny... I look at their faces, to see if they are in pain, or perhaps need help. Because it hurts to do nothing at all. It haunts me sometimes, to wonder what I might have done differently.
There was another incident many years ago - it was another of those illuminating moments for me, and perhaps it will be for you, as well.
This was about twenty-five years ago, so my children were about four and five years old, give or take. We were in a grocery store, and saw a woman in a power wheelchair. She was tiny - her body wasn't much bigger than that of a one or two year old, but her head was a bit larger. I turned to remind my children that they shouldn't stare, but it was too late. They were gone.
I looked over at her, and my son and daughter were standing there talking to her - doing everything but climbing into the chair with her... asking questions about her chair, how it worked, etc. It was, for me, a facepalm moment. Rushing over, I prepared to apologize for their behavior.
Her response still clings to my mind, even after all these years.
She told me that she was glad I hadn't kept them away, and told them not to stare. She said that most parents do just that, and it made her feel badly - like she was some scary monster they had to be afraid of. She didn't mind my kids asking questions and being curious, because that way they could see that she was just another human being, even if she looked different from everyone else.
As Keith said on his show the other night "Oh boy... that hit home". And it hits home for me now, thinking back on that day.
Just another human being. I'm almost in tears, just thinking about it, even now. Just another human being. That young man, crying in his wheelchair with his hand twisted behind his back - he's just another human being. And so was that woman in the store. So am I - and so are you.
We're all just human beings.... with hopes and dreams, and feelings. Someone who just wants what everyone else wants - to be loved, to be treated normally, to have a place in the community.
So I would ask you this: Next time you see someone in a grocery store, riding one of the electric wheelchair/shopping carts and you look at them and think "Gee, they look normal to me. Are they just lazy?" Ask yourself this - do you know everything about them? Can you be sure they don't have some rare disorder that makes it difficult to walk?
If you see someone stumbling down the sidewalk, or lying on the pavement, don't assume they're drunk. Please. Because I have had people make that assumption about me when I've been so weak that my legs stopped working.
Don't assume. And remember that we're all human beings. That's all I ask.
I'll leave you with this:
"I do know without fear of contradiction what the definition of life is and it is 12 words long. 'Life is defined by how much you improve the lives of others.' " - Keith Olbermann
To that woman in the wheelchair, I say "Thank you" - for opening my eyes, and my mind. And now that I'm in a somewhat similar position... I understand.
A lot of people have improved my life, some on a daily basis. To all of them, I say "Thank you". And thank you for reading.
Update: It occurred to me that I needed to add something about that conference I attended last weekend. I didn't want anyone to get the wrong idea.
The people at that conference, as soon as they realized I was having difficulty, immediately went into action to do everything they could to help. I wasn't the only one to have a problem that day, or that weekend - at one point, we had four people down, and the paramedics were looking to see if there might be a fifth out there. Nobody had to go to the hospital, because this happens to us fairly frequently... but they had the medics there available for whatever we might need.
The mood was good. People were cheerful and friendly, and even those I had never met before treated me - and each other - like best friends we just hadn't met yet.
So... thank you to those who attended, and who treated me so well last weekend. It was a very positive experience.