Handicap doors, a dance with the devil

I started attending our local community college earlier this year. I knew it was going to be a big change for me, but my one real worry was whether I'd be able to get around the campus safely and effectively; though the campus is not large compared to the big University I live near, it's dramatically bigger than the 100-student high school I came from. Since there are multiple buildings on campus, and I have a finite amount of energy, it is actually really important that I head in the right direction.

To my relief, the large campus has not been a big problem, and one of my parents is always available if I need to be driven to one of the farther buildings (I don't drive yet, so they always pick me up).

One thing the campus has that my high school did not is a lot of automated handicap doors. Although they seem friendly at first, do not be fooled, an automated handicap door is actually a dance with the devil. A few weeks ago, the devil gave me a taste of my first public fall. But not just a public fall, a nuclear public fall, that is a public fall where there is no obvious way to get back up and no one is around. Falling like this is one of my greatest present fears, especially the realization that I might not be able to get back up.

Here is the story. I'd just gotten out of class an hour early and it was the end of the day, so I was feeling pretty relieved and ready to just get home and relax. I walked down a few long halls while rolling my school bag steadily behind me; I took my time, knowing my ride wouldn't be there for another 15 minutes.

I finally reached the two sets of large glass doors, and casually pressed the handicap button to open them for me. Never assume the handicap doors are your friends, let alone safe--I learned this the hard way, for as I was walking through the doors (at a slow but steady pace, not unusual for someone actually needing this feature), one of the doors decided that time was up, it did this all on its own without consulting me. Wham. Shutting while I was still in the door obviously came as quite a shock, and, giving the devil his due, I promptly fell over very hard on my knees.

I'd been in similar situations before, and knew the steps to follow in handling it.

Step #1: Take a moment and check yourself for severe injuries before proceeding the attempt to relocate and eventually get back up.

I was relieved that I appeared to have no real injuries, although my knees had taken the force of the fall and were notably and understandably sore.

Step #2: Check your surroundings.

Still in front of the doors, blocking the path should someone come through them, I could imagine being cut cleanly in half if someone else choose to press the dreaded handicapped button. In fear, I slowly scooted myself off to the side where I could more clearly contemplate the situation. For me, I usually need something like a chair to pull myself up with--otherwise I'm pretty much screwed. A quick glance around proved that there were no chairs.

With CMT, you are forced to get creative. If there isn't a chair, then you have to use your head to find the best alternative, and figure out how you're going to get through each new difficult situation you're placed in.

Step #3: Formulate a plan.

It may sound like I'm taking way too much time in getting up, that I should just be calling someone for help or grabbing at any object in sight, but in my experience, you want to know everything about the situation, all the options available to you, and make sure you don't get yourself into a worse mess. Anyway, with CMT, you learn that there's no need to rush.

There were only three objects around me that were solid and might provide some assistance: my bag, a pillar, and a wall. Oh wait, there was a fourth object, my cellphone. I found my cellphone in the bag and quickly phoned my mom, letting her know she might have to find me and provide me with some assistance since she was coming to pick me up anyway; I also told her I'd be working on getting up. The pillar was immediately ruled out as something that could help me out. The wall, however, was not completely flat and had various ridges which I hoped I could pull myself up from.

Step #4: Initiate plan.

I got on my knees, and soon discovered I'd hurt my knee much more than I'd originally thought. I could almost hear the evil door laughing. I was scared to put too much pressure and weight on it, and after fighting and pulling at the wall for several minutes, I gave up that plan of action.

I should mention that being as proud as I am, whenever anyone would walk by I'd cease my efforts and pretend to be casually sitting there and riffling through my bag. Adding other people to the situation also just complicates it. People are often very sweet and will often you "a hand" when you fall, but for me that's not very helpful. On more than one occasion I've had someone almost rip my arms off trying to "help" me get up. No thanks.

I turned to my bag. If you looked at it the right way you could almost imagine it was a little stool. My last hope, as far as doing this myself was concerned. I got into position, my stool, my savior, but to my dismay, my bag started to roll away when I'd try to push off it! Those wheels, normally so helpful, do not make for a very stable stool. But like I said, you have to be creative, so I tried laying the bag on its side. This worked much better, but not well enough--it wasn't quite tall enough.

Finally I was beaten, and leaned against the wall as I waited for my mother to get there. She arrived before long, but after a few minutes of discussing the situation and her pulling on my arms (see, I told you so), we were at whits end. A kind man noticed our peril and offered to help. At this point, I didn't bother to hesitate. Pride be damned. We explained I was having trouble getting up, that I'd fallen and hurt my knee, and had had troubles with it before (which was true, and I didn't see the point in trying to explain CMT). Before we knew it he'd called over a security guard. I could see already that my little fall was turning into a big event. I was now getting much more attention than I had wanted. Security guard #1 and the man talked about how to get me up and questioned me. They were talking about me while using their security radios and calling for more backup! Meanwhile, my mom checked inside the building for a chair, which we hadn't thought of before. She brought one out and they managed to help me up onto it--it was harder than usual since my knee was rather banged up.

Within another minute, backup arrived, two more security guards showed up in their vehicles, first aid kits and all, communicating on their walky-talkies and declaring they'd been "dispatched" and the "situation was under control" and "the girl is now on her feet and doing okay." This was all said very loudly, just in case anyone withing 100 yards had not yet heard. I was questioned some more and they then allowed my mother to drive up right there so I wouldn't have to walk as far as the parking lot. Mission accomplished, you could tell they were happy to actually have something to do.

Step #5: Relax and remind myself to never trust handicap doors again.

I'm just me

I've had Charcot-Marie-Tooth my whole life, but once I officially found out I had it I felt like was a different person; I wanted to be normal again. I've heard "Ignorance is Bliss," and in this case I really felt like that. Maybe if I never found out it'd just disappear, and I wouldn't be forced to cope with it and eventually accept it. Only recently have I seemed to realize that I never became a different person, that I've always been me, and that's all I'll ever be.

Throughout the last few years, whenever I'm going to be around a new group of people (like in a new school) who don't know me or my physical history, I promise myself that I won't let them find out and change how they think of me. CMT will NOT define me, I say.

And yet somehow I always end up telling people, and they end up finding out many details about my "adventures." Do I let CMT define me with these people? No. CMT will never and has never defined me, but it has helped to make me the person I am today and is an important part of who I am. If someone is really going to know me, then they should know my CMT too, a very intimate part of me.

Your Story

Dear CMTers,

I apologize for not blogging as often lately--life has been rather hectic, which I'll explain more in the Patella Trials "series".

When I first had the idea to create this blog, my first job was to think of a title. I figured that "Life With CMT" was appropriate, since that was what I was going to write about, my life with CMT. However, I think that to really understand CMT (and I do want more people to understand it), you need to hear more than one person's story. So I'm asking you to give me your story. Tell me your life with CMT. Depending on how many stories I can collect, I'll most likely either put them in their own posts, or have a section for them when my website is finished.

Let me give you some more details for those of you who think this is something you might want to do:

• Please include which type of CMT you have, if you know.
• Let me know if I should include your name or leave it anonymous.
• You can either write it like a mini-bio, or do it in an interview form. If you'd like it to be more of an interview, which is fine, you can have me email you a list of questions to get you started. Some examples-
• When did you begin to notice signs of your CMT?
• When were you diagnosed with it, and with what type?
• How has it affected your life and what ways do you use to deal with it?
• etc.
• Write it however you feel most comfortable.
• It can be as long or short as you like.

You can email me your story at lifewithcmt@gmail.com, or my personal email, rainbowblast@comcast.net. Just make sure to include CMT in the title of your email.

If you have any questions or comments, please either leave them in a comment in this post or feel free to email me.

Thank you all!

Patella Trials Part II

In no time I was being wheeled through a hospital hallway. My pain had been less due to the medication, but that state of slight comfort left quickly. Muscle spasms soon started erupting in my dislocated knee sending me into pain more excruciating than I had ever imagined, or thought I’d be forced to experience. I was now screaming in the seemingly perfect rhythm that the spasms came. I could feel the staff wheeling my stretcher start to go faster.

Finally we made it into my own private examination room. The spasms had mostly subsided but they still gave me a very large dose of morphine – I did not discourage them from the task. Unfortunately, it wasn’t long though before the spasms started again and I was screaming again, even drugged with all of that morphine. I was begging them to give me something else to take it away. However, in order to do this my dad had to sign a special paper giving his consent, before he signed he looked at me and asked “So, what is it worth to you?” I was not amused, he signed, and they gave me a large dose of yet another drug. Ahhh, bliss.

I looked up at the TV in a corner of the room—the University of Michigan football team was playing. I looked down at the now blue and yellow paint stained sheet I was laying on; coincidentally, Michigan’s colours are maize and blue, and every staff member who touched me got a little extra of the school colors on their already maize and blue uniforms – I was in, after all, the University of Michigan hospital. Then one of the doctors started poking around my knee, drawing my attention away from the TV. Before I could realize what she was doing she popped my kneecap back into place. Fortunately, the pain was minimal after all that medication.

Next I was wheeled to another room to get X-rays of my knee. Apparently there is a 30% chance of fracturing something with this type of injury, but thankfully I was “fine” in that respect. After that they put an immobilizer on my leg, gave me a pair of crutches (even though I can’t use them even without the injury), and well, pretty much just sent us on our way.

Once we’d gotten me into the back seat of the car (with assistance), my dad suddenly piped up, “Wait, now what are we gonna do?”

Patella Trials Part I

"Ambulances are a lot smaller than I imagined," I thought to myself, "But I guess this stretcher takes up a lot of room, and all of the supplies in these glass cabinets…"

Suddenly my train of thought was interrupted by a hard pressure on my arm; "Ah, they're just taking my blood pressure—again." As the rubber tightened around my scrawny biceps I tried to think back about how this had all come to be.

Earlier this Saturday morning I had happy headed of to school for drama club practice, opening night being only five days away. I'd been painting the backdrop for the set with a few other girls between time on stage practicing my lines. I was admiring our painting skills as I started to try to make my way around all of the paint jars, brushes, and various other supplies scattered around the floor. While I was still standing I felt my right leg suddenly tighten up completely. This didn't strike me as too odd or worrisome at first, even though this usually happens when I'm laying down. But then my leg started to be enveloped in an increasing pain. I tried to move it, but I couldn't. I couldn't keep my balance, and I fell backwards. The other girls in the room ran over to me, making sure I was all right. I auto assured them I was, but then I became aware of the intense pain yet again. I finally pinpointed the source of the pain to be in my knee, so I pulled my skirt up over it slightly to check it out. I yelped. I was horrified. The middle part of your knee that jets out was… gone—sunken in. Instead, that "bump" was on the outer side of my knee. It was horribly disfigured and not a pleasant sight for me. One of the girls there calmly told me that my knee cap had popped out, and that she'd had it happen to her before. She said I needed to straighten it so it would pop back in (my leg was bent around a jar of paint), but I refused. I wanted a doctor, or someone with some sort of experience/authority. The girls there were amazing though. They called for help, got me some pain medication, held ice against my knee, propped me up, stroked me, and reassured me that everything would be all right in soothing tones. They also cleaning some of the paint off of me—When I fell I hadn't realized that I knocked over huge jars of paint that I was now sitting in, I was literally drenched in the stuff.

When the drama teacher found out what had happened and saw my knee she called my dad, who's had this injury three times. He originally said not to call an ambulance since the hospital was less then a mile away and he rushed over (he had his knees pop-out three times). Once he got their he realized that it hadn't popped back into place, I was unable to move, and I was soaking in paint - so we ended up calling an ambulance. They arrived soon and were very nice and professional, quickly giving me an IV of a strong pain medication. They had to give me two doses to cut down the pain enough to tie my legs together and load me onto a stretcher bed. Then they proceeded to wheel me out of the school and load me into the ambulance.

"We're here." It was one of the paramedics. We were at the hospital. My knee was still not in place. I was dripping in yellow and blue paint, and the next phase II of my trial was about to begin.

Website

I'm currently working on plans to create a CMT website. Even though I try to include useful information in my blog entries, I would ideally like to have a wide-range of good information easily accessible to you (that is also easy to understand for those of us who aren't scientists!). I have other plans for the site as well, but you'll just have to wait and see!

If you have any comments and/or ideas, you can email me at lifewithcmt@gmail.com or post a comment here. Also, if you are a good programmer and would be willing to help with some more advanced features later on, please let me know!

Thank you!

Trick-or-Treat Pleurisy

Princesses, Witches, Angels, Goblins, Faeries, Charcot-Marie-Tooth, Pirates--wait a minute, where does CMT fit in there? Oh, right, it doesn't.

This is my first year not trick-or-treating. I am in high school though, so I haven't had to give anyone a reason for not going (the real reason). When I went last year I had a lot of trouble getting up the steps to the doors (pretty much all of the houses here have at least one step up to them), that was when my CMT was really starting to show itself. This year I just don't feel it's worth it. Steps are harder for me than they were a year ago, and I don't really need all of that candy anyway! So we're staying in, but we still carved a pumpkin, made cupcakes, and the pumpkin seeds are cooking in the oven.

But that's not what the real topic of this post is about!

In my last post I mentioned how I'd had stabbing chest pains. I still have those chest pains days later--luckily most of the time they're bearable.

I've found that it is very easy to just blame CMT for my aclectic health problems. Let's face it, CMT can cause all kinds of different problems! Does this mean I should blame my need for glasses on my CMT? (I've heard CMT could possibly cause vision and hearing impairment) I could, but I could also admit that bad vision runs through the CMT-less side of my family. My point is, it may be that CMT isn't causing some of your problems, and I'd recommend looking into other possible causes, because those might have possible treatments.

I mentioned the chest pains to one of my science teachers (who I've been talking to about CMT stuff), and after asking some questions she concluded that I probably have Pleurisy.

From wikipedia:
"Pleurisy, also known as pleuritis, is an inflammation of the pleura, the lining of the pleural cavity surrounding the lungs, which can cause painful respiration and other symptoms. Pleurisy can be generated by a variety of infectious and non-infectious causes."

Pleurisy can develope after a respiratory illness, and I did have a bad cold quite recently. So I thought that was an interesting bit of information, as I'd never actually heard of Pleurisy before, so I just thought I'd share that with y'all!

Happy Halloween!