Roll Softly and Carry a Big Stick

The Americans with Disabilities Act (ADA) mandates that all people riding public transportation in a wheelchair need to be secured. Often, if I am traveling only a short distance I will try to talk the bus driver out of tethering me down; but the best drivers will always insist on buckling us in. I always viewed it as a manner of protecting us, the disabled; but one driver explained it very succinctly one time: "If I have to slam on my brakes, I don't want you to come flying down the aisle and hitting me!" It made sense, and I started imagining scenarios where there could be even a very minor traffic accident, but with my chair not fully secured, it could cause some serious injuries to those passengers around me.

Well, today I was on the way to my neurologist at the University of Texas Southwestern Medical Center; this medical complex is huge. It has a medical school, four hospitals, and many professional medical office buildings. It is a very busy place, so all of the six or so different bus routes that serve it are always jammed full of passengers. Today after I got into my place, I was trying to secure myself with one of the seat belts, but am always unable to reach the one belt on the floor. The bus driver was completely ignoring me so this woman started to help me and made the comment that he (the driver) just wasn't going to get up and help me. He took off with me untethered and the woman still standing in the aisle. At the next stop I requested his help and he yelled at me and then got up and started chewing me out saying that the belts didn't work. Well, there are three separate ways to secure the chair, and there are two wheelchair areas, so I wasn't believing that all six seat belt or hook & tether systems weren't working. I even pointed out to him the obviously functional ones in the area across from me. During this time I could hear people saying stuff about me, one lady complaining she would be late for work, and other rude comments. While I understood where she was coming from, I saw the bigger picture.

Well, before I knew it I had turned around and began yelling at a bus full of passengers! I couldn't believe it. I knew that this could be a dangerous move on part (given the neighborhood and some of the passengers on board), and I also knew that I was just adding fuel to the fire but I seemed to be on automatic pilot. All I heard was my voice yelling at them, "Look! I'm already in a wheelchair, I have nothing to lose! I'm trying to protect you guys!!! If something happens and I go flying, YOU are the ones that are going to get injured. I'm already damaged. What more could happen to me?! So stop talking about me behind my back!!" As soon as I finished I expected an outpouring of laughter and ridicule, but there was just silence. There were no more rude and impatient remarks. I was shocked that they actually seemed impressed and listened to me. Most likely they were shocked that the "disabled woman" wasn't as meek and frail as they thought she was!

The funniest part was when one of the men I was especially yelling at later made his way to the seat nearest me and started talking to me. He apologized for being nosy as he asked if he had just seen me on television (I had just been on a local station a few days before, so I groaned and thought that's what he was talking about). Then he said, "Aren't you the woman whose ex-husband shot her?!" I answered that I was not. Then he apologized again and asked me if I had just come back from Iraq, was I a disabled vet? I told him no and bluntly told him I had multiple sclerosis and left it at that. It was only hours later that I saw the humor in his questions. Evidently my angry tirade at the passengers on the bus left them with only two possible scenarios for a disabled person who would do such a thing: I was either a woman who could provoke her husband to shoot her or I was a injured soldier back from fighting in a war!!

See, even if you do have a physical handicap, you can still make people believe that you are a strong and aggressive woman! :-) I think it's hilarious. Normally, I would have been horrified that people would view me in any way less than that of a soft, feminine lady; but to be honest it was a nice refreshing change from being viewed as a helpless "cripple".

Dallas is a large city, but maybe my reputation will precede me and the rumors will grow: That's HER!!! She's the woman that killed a man with her bare hands, even AFTER he ran her over with his Hummer and broke both of her legs! LOL

Just remember, everyone has some sort of handicap, in some shape and form. But more importantly, no matter what handicap someone may have there is still a part of us that is strong and is able to take of ourselves, no matter what.

Sweet Relief

I'm addicted to sugar. Plain and simple. I know better, yet I still eat too much of it, especially if it's in the form of chocolate. However, I've been developing this theory that since sugar and caffeine, which I've already easily given up again since I used to be LDS (Mormon), are so stimulating to our nervous system, I believe that there are certain symptoms of multiple sclerosis that can be exacerbated when too much sugar is eaten. Of course, this is only my personal experience (though there are some others who share this view).

I used to have chronic trigeminal neuralgia (TN), an **extremely** painful condition involving one of the cranial nerves that innervates the facial muscles; it is sometimes referred to as "The Suicide Disease" - OUCH!!!!! I have even been hospitalized and put on morphine for this. Then I started noticing that sugar and caffeine would trigger the pain. I began abstaining from both of these neural stimulants and it helped immensely. However, I still had some pain from the TN, so my doctor gave me tegretol for it. The tegretol helps a lot; I still have some breakthrough pain, but it helps so much I have been able to eat sugar again. (I still refrain from caffeine because any time I have it it feels like a lead pipe is being shoved through my brain!)

So lately I've been wondering if the sugar I eat can increase some of my other MS symptoms. I also have these seizure episodes, where I become nonresponsive and my muscles become extremely weak and I am unable to move. I am able to hear those around me, but I cannot respond. The Keppra I take helps immensely, but I still have these episodes sometimes. My dissertation advisor once remarked that it seemed like I was more prone to have them when I ate a lot of sugar. Well, today it happened again. I had two doughnuts for breakfast (oops!), and about an hour later I had one of my episodes. Luckily someone caught me before I hit my head on a file cabinet.

I am now going to keep a personal "lab notebook" and journal my daily activities and diet along with my MS symptoms. I know, many patients already do this and I had been advised to, but I didn't want to. I hated giving this disease any more of my time than it already had, but now I'm curious. I will begin trying to drastically limit my refined sugar (we'll have to see about honey and fruits) and see how it goes. In addition to managing the pain, I believe there will be a marked improvement in the number and severity of these seizure episodes.

To be honest though, these episodes are so far and in between that I'm not sure that's enough motivation for me to give up chocolate and other desserts. I need more motivation. (It's true - I'm addicted!) Therefore, earlier today I emailed my neurologist to see what she thought of the idea of halving my tegretol medicine, so that perhaps I could get enough breakthrough pain of the TN to motivate me, but an amount that could be managed with the sugar abstinence. Trust me, the pain from trigeminal neuralgia is ample motivation to not eat sweets!!! My mother thinks I'm crazy to gamble with such severe pain like this, but I really think the sugar is messing with my other MS symptoms; and I'm being honest here - I am just too weak to abstain any other way! It's sad, but true.

That's the way I am. I'm strong enough to control my vices in big decisions but not in the tiny moment by moment ones. For example, I do not subscribe to cable or any other service that will bring televised programs into my home. Why not? I *love* television (CSI, FBI files, Two and A Half Men, British comedies, Discovery channel, etc. etc.) I would watch tv all of the time. I would lack the willpower to just turn off the tv when a show I wanted to watch would come on; but I can control it from the grand scheme but just not having it in my home. Likewise, instead of saying "Hey eating sugar could cause some problems for me hours or days from now, don't eat it!" I have to have immediate agony. I'm like a rat being trained in a maze with electric shocks! So sad.

I will be interested in seeing what my neurologist has to say about this. She is wonderful really, and is always willing to indulge me and listen to my opinions. I am a difficult patient sometimes because I know just enough neurobiology to make me dangerous, and I can be very opinionated in what I want when it comes to my health care. Fortunately, my doctor appreciates this and we get along very well. I feel very blessed to have her as a member of my health care team.