The Big One

March, 1987

This particular attack started around 1:00 in the afternoon while I was at work. I was fine one minute and got up from the table after lunch and had quite a bit of trouble walking. By 3:00 that afternoon, I could no longer lift either leg, I could only drag them. I began to lose the coordination of my arms, legs and hands as well as the fine motor movements. My arms were bent and curled in towards my body, both wrists were bent down at 90 degree angles, my hands were clenched into fists, and the only place I was not numb was the right side of my face. Within 2 hours this happened! Yes, it got worse by the next day. You want to talk about frightening!
While having MRI’s done that evening, I was strapped down more so than normal because my arms, hands, fingers and legs were moving involuntarily. One of the scans was of the brain stem which is a very sensitive scan. The slightest movement will cause the scan to be blurred. So much so that you are not even allowed to swallow during this scan! I was told not to swallow for 13 minutes (the length of this scan). That’s a long time! Of course, as soon as they say, “Okay, we’re going to start, don’t swallow or move.” what is the first thing you have to do?!? I didn’t swallow. They did however have to do the scan over because they said I did move, so they strapped me down some more!
I was hospitalized the next morning and put on my friend the IV. This IV would stay with me for the next 3-1/2 weeks while in the hospital. The longest I have ever had to be on IV medication.
I had now lost all the coordination and fine motor movements in all of my limbs. Consequently all of the movements that I made were very erratic and spastic – most especially with my arms and hands. My hands were either in a very tight fist or in the form of a claw all of the time. My left wrist was now curled downwards at more than a 90 degree angle – it almost touched the underside of my wrist. Both arms were curled and misshapen even more than the day before. I was unable to keep them from “holding” themselves against my body. The only way for me to open my right hand was by force. I was able to lay my arm on my leg and force the hand to open to some degree. Upon doing so, the fingers would move uncontrollably – so much so that I began to refer to them as “spider fingers”. With much effort I was able to bring my wrist up to it’s normal position for very short periods of time by using this method of force.

I BECOME HELPLESS –

AND IT’S ONLY THE BEGINNING
It was at that time and over the next day(s), that I began to realize just how serious this was. With each test I was given, I realized what else I was no longer able to do. Each simple, everyday task I tried to perform became what seemed to be an insurmountable obstacle. I was about as close to being in a vegetative state as you could be, without actually being so. Every minute of every day became a hurdle, a challenge, and a defeat. I could no longer function on my own.
My left side was/is always affected much worse during an attack. I was unable to bring this wrist to a normal position on my own at all. Forcing it wasn’t possible. Someone else would have to move it which would cause quite a bit of pain. A plaster splint was made and formed from my forearm to my fingertips. This kept the wrist bent at only a slight angle and my hand at a slight curve with the fingers held in place with straps. This was so that the tendons and muscles did not shorten permanently over time. My left hand was now rendered useless by the splint. (As if it wasn’t already!)
It was impossible for me to pick up anything with my right hand. If I was able to open up my fingers enough to grab something, my hand would immediately return to a fist and crush whatever was in it. On the other rare occasion that I was able to grab something with my fingers, they would immediately release, thus I would drop whatever I had grabbed. Suffice it to say that I really had no use of either of my hands at this point. There was very little I was able to accomplish on my own, or with a great deal of difficulty and time, as I will explain later.
The strength of my arms and hands were tested the first day in the hospital. My left side was less than half of what is normal. The right was slightly above half. Another iron thrown in the fire. My legs were found to be at about 3/4 of their strength with the left being slightly less. My walk was more a shuffling of my feet because I really couldn’t lift either leg. I could stand, but a “gait belt” was put around me when I was in therapy. I was held on to while I walked, so that I wouldn’t fall over. I was put into a box during occupational therapy that comes up past your waist and is somewhat tight. This is to prevent you from falling, when performing “tasks”. Being an extremely independent person, the gait belt and “the box” infuriated me to no end. I would get enraged with being put in “the box”. Being forced to use a wheelchair much of the time was another indignity. I would yell, complain and get very nasty every time these indignation’s were forced on me. Again, humiliation and defeat.

WHAT CAUSED THIS? WHAT DOES IT MEAN?

All of this was caused by a plaque that was about the size of a pinhead at the basal ganglia in the brain stem. As it was explained to me, the basal ganglia is like the central switchboard of the brain. All of the impulses and messages are routed through this area. Consequently all of the instructions if you will, were being stopped at this point. This also caused an inability for my brain to recognize any part of my body unless I looked at it.
Let me try to explain… If I had an itch I could not just reach out and scratch it. I had to look at the area that was itching, then look at my arm, then look at the area and keep doing this until I was able to reach the area of the itch. I was guiding my brain with my eyes to recognize what it no longer was able to. This was true for every movement that I made throughout the day. The lack of coordination, fine motor movement and use of my hands only complicated matters. If I couldn’t see it? It didn’t exist as far as my brain was concerned. One of the tests was for me to close my eyes. They would manipulate my hands, fingers, arms and legs and ask me what position they were in, were my fingers pointing up or down etc. I had absolutely no idea.

I REBEL AND REFUSE TO ACCEPT MY CONDITION

I can remember trying to answer the phone while sitting in bed. The beside table was always right up against the bed with the phone on the edge of the table. Everything was placed as close to me as possible. I would go through this “mantra” as I called it, of looking back and forth for all of my movements that I explained above. Once I was able to reach the phone I would force at least 2 of my fingers open enough to grab the receiver. Then as quickly as possible, throw it, flick it, toss it, whatever, onto my lap. Of course there were times I was not successful in these things. If I was, I then had to work very hard at sliding the receiver up to my ear with my arm, hoping that the person was still on the line. I then held the phone in place by turning my head and wedging the receiver between my ear and the pillow. I would have to call a nurse to hang the phone back up for me. I was used to doing most everything for myself while in the hospital as I said. I rarely called for a nurse. I’d do it myself, or walk out to the nurses’ station to ask for soemthing. I was beginning to have to ask for more help than I was used to.
Naturally, along with all of the physical problems to overcome, the emotional problems soon followed. It was demoralizing to me. I hated every minute of it. I rebelled to no end. I was the worst patient ever. I was sarcastic, rude, nasty and uncooperative. I fought with anyone who tried to help me. I didn’t need anyone’s help and no, I was NOT going to stay this way. It was going to “go away”. I wanted to be left alone. I wouldn’t allow anyone other than my parents and my best friend to even visit me in the hospital for over a week. I didn’t want anyone to see me this way. I was frightened. I was embarrassed. I never knew such humiliation as I did during this time. Such utter devastation and frustration was something I’d never experienced before.
My Occupational Therapist put an old shirt on me one day and told me to button it. I scoffed at her and in a very snotty tone, asked why she would want me to do something so stupid. Guess what? I was not able to button that stupid button. (True, I only had one hand to do it with) However, I had NO idea how to do it. Yup, that’s right. I no longer knew how to do much of what I learned as a child. I knew on an intellectual level, but was not able to figure out how to do it physically. I was much like a child learning everything for the first time.
I couldn’t visualize, understand, nor make my body accomplish most things. I couldn’t write because I couldn’t hold a pencil. I couldn’t bounce a large ball. I couldn’t figure out how to put simple pieces together to make something. I couldn’t place a peg into a pegboard. I couldn’t drink unless a straw was put in the glass and the glass held for me. (I don’t wear hospital gowns, I wear sweats and tee shirts.) Getting dressed was a huge chore. I had to put things on the bed, or floor, and try to get my arm or leg into the openings. Then with my right hand, in a fist of course, inch whatever piece of clothing on by sliding it with that fist. It took forever! To eat, a bed table was put 2 inches below my chin. Special silverware was made with huge plaster handles so I could grab them in my one fist. Most food ended up on the floor long before it got to my mouth. Eating, which I love to do, was an exhausting chore. When you have no coordination, your limbs flail all over. They shake. They jerk. These are just a few of the mundane things one does every day that had now become if not impossible, near to it.
I had been a competitive athlete since 6th grade. I’d always said I never wanted to lose my legs. Well, I changed that tune real quick after this. I had NO idea just how many times a day, and how many things, you do with your hands. Until they were gone that is. It seemed as though all day long, all I did was find out some other simple thing I could no longer do. Trying to blow my nose. Ha! Most did not make it into the kleenex. I had 1 “hand” to do everything with and it was a fist. Now, imagine trying to blow your nose. Imagine going to the bathroom. Imagine doing most anything. Go ahead. Make a fist. Now with that fist, “grab” the kleenex, “grab” the piece of toilet paper. Now, try doing what you’re supposed to do with them. Can’t do it huh? Nor could I. And there was no way that I was about to have someone wipe either of those things for me! Try going about your normal activities for just 10 minutes like this and you’ll get an idea of what I mean about just how much you use your hands and fingers.

I START TO LEARN A FEW THINGS

This brings me to another important point(s). I was embarrassed and humiliated but at the same time, what bothered me more than anything, was seeing what my condition did to those who cared about me. That was perhaps one of the hardest things to deal with. It still is to this day. I said I don’t now nor never have, wanted people to feel sorry for me. I also don’t want to cause people to hurt because of me. I understand that when you care about someone it is very hard to see them in a state such as I was in. Stress plays a big part in MS, it can cause symptoms to flare up. Seeing what it did to my parents crushed me. I knew that as parents, it was even harder for them to see me in this condition. It is hard to explain. It’s the reason I wouldn’t let people come and visit me for over a week. When I finally did, sure enough, the look on their faces said it all. They held it together, but as they were leaving, I could see them walking down the hall from my room, and see that they were crying. This was just as devastating to me as everything else. I didn’t want pity. I didn’t want to make people upset. It was easier just to tell people not to come. If I could have, I wouldn’t have let my parents come. It was very hard to see what it was doing to them.
My best friend was able to act like there was nothing wrong and treat me like “me”. I was so thankful for this. I mention this because when I do have attacks that cause some of these same things to re-occur, I am getting better at seeing people and not being embarrassed or humiliated anymore. I don’t want people to be upset. Which is probably asking way too much. But if it’s possible, don’t show it. Having been in this state, has taught me to no longer look at someone who is in a wheelchair or has any type of physical problem like they are “different”. This is one of the things that I learned through all of this. To be stared at, to be looked at with pity, to feel like you are felt sorry for, is not a pleasant thing. It is human nature to look when we see someone who is “different”. I no longer do that. Because of this I have a whole different understanding of what it’s like to “be different”.
Another thing that really bothers me, and is also hard to explain why, is when someone comes up to me and says, “Rae, you look so good.” I have gotten so that I hate that phrase. I think, “How am I supposed to look?” Are you expecting to see a cripple? Are you expecting me to be in a wheelchair? Are you expecting me to look any other way than I normally do?” Why? And don’t expect that! I know, it doesn’t make sense. It is hard to explain what I mean and why this is true. At the same time, if I do look “different”, I don’t expect you to ignore it in the sense that you won’t ask. It doesn’t bother me to have anyone ask what is going on. I’ll tell you. I don’t hide from it. Just don’t expect me to look different, but do accept it when I do.
I came home from the hospital with several little goodies that help in doing tasks that we all take for granted. A special tool to button a button with. I got to take home my special silverware. I got a special cutting board that has spikes in it to hold whatever you are going to cut so that you don’t have to hold it. The knife that they gave me is actually quite cool. It looks almost like a dagger, and you use a rocking motion to cut things with it rather than the typical sawing motion. They have all kinds of things as aids.

I GIVE UP – AND MY TURN-AROUND

With each thing I attempted I got angrier and angrier. I got more and more frustrated. I became more and more depressed. Until one day I simply gave up. I’d had it. I was done fighting. I was done trying. I was tired of no matter what I tried to do for myself, I couldn’t do it. I told myself there was no way I could go through life like this. Just let me die God, please. This is no way to live.
I got back from a therapy session, told them to close the door, turn out the lights, close the curtains and leave me alone. This was after a little more than a week in the hospital. I laid in bed in the pitch dark and I cried. For the first time since being diagnosed I cried. For the first time I felt sorry for myself. Why me? I laid there in bed and decided I wasn’t going to do anymore stupid therapy or anything else. If this was the way it was going to be, so be it. Leave me alone.
A strange, yet wonderful thing happened then. Someone brought in a plant and a card and set it on the bedside table and left without saying a word. I looked at it with disdain and hate. I hated everyone and everything at that point. Later, for some reason, I decided to read the card. It took quite some doing to even get it open. It was from my “theatre family”. I was about to start work on a show when this all started. It was a huge card, signed by everyone in the show. Words of encouragement, words of love, friendship and telling me how if anyone could do it, I could. That they needed me and missed me. Well, it was a turning point for me. I cried some more. And then, well I was kind of like “Rocky” from that point on. I was going to beat this thing. I was going to get better. Never mind what any doctors or therapists were telling me. There was that small chance that I could regain some function. And damn it, I WOULD!

THE OBSTINATE, STUBBORN, STRONG-WILLED,
BULL-HEADED RAE COMES BACK

I turned on a light, and shuffled over to a table where my friend had brought me some things for therapy. Legos, those huge crayolas they use in pre-school, one of those tablets with the really wide lines they use in pre-school and one of those huge pencils. I started with the Legos. I worked for 4 hours undisturbed by anyone because my door was still closed, on building a 3″ square block. I DID IT!!!!!!!!!!!! I opened my door and called out to the nurses, “Look! Look what I did!” They came and hugged me and we all cried. True, a little block is no big deal to the average person, but to me, at that point, I’d just built the Taj Mahal!
I should explain too, that since I was in and out of the hospital so many times, I knew most of the nurses and staff very well. We had become friends actually. Nurses would come to my room when they had a break to visit, watch TV or just talk. We would have “parties” in my room when I was there. (isn’t that a surprise to those of you who do know me!) So they knew what an achievement my building this block was. What a turn around it was for me to even attempt to try to do it. Which was why I got the reaction I did to my “masterpiece”.
With that under my belt I attempted printing my name. Just the “Rae”. It took quite a bit of doing, and looked like a 3 year old had printed it, I took up several of those large lines, but again, I DID IT! The next day my regular nurse, my “team nurse”, came in. Yes, I had a team of 7 people “taking care of me”. Nurses, therapists, my doctor, psychologist, minister, the Head of Therapy and Rehabilitation and the person in charge of placing you somewhere when you leave the hospital. I showed my nurse my block and my name and we hugged and cried some more. I think my doctor was on the verge of tears as well when he saw a picture I colored for him from a kids coloring book-yup, I went out of the lines!
As I said, it wasn’t just the physical problems; I no longer knew how to do anything. The concentration and effort it took to print “Rae” was tremendous. I was and would continue, to learn how to do everything all over again much like a child. And not just learn. There was more to it than that. I had to teach my brain how to do things in a way it was not programmed to do. There were many things that I would learn over the next 4-1/2 months.
That’s how long it took for me to be almost symptom free by outward appearances. I was not able to go back to work or drive for a month after getting out of the hospital. I did go through a period of about 2 months of very strange seizure type things. They would last for a few minutes and make my arm jerk pretty violently and was actually quite painful. A “short circuiting” of sorts within my spinal cord. Because of where this plaque was, the amount of havoc it was creating was tremendous. There were no impulses from the brain that simply went where they were supposed to go. They just stopped at the brain stem. So re-training was in order. The brain has this capability already. It does it with every attack or any other trauma. It does so with such precision and is so instantaneous, we don’t even realize it. Truly truly amazing. But in my case, there simply was not the capability for the brain to do it on it’s own.

To continue, Read ‘Adapting To A New Way of Life’

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Categories: Multiple Sclerosis | Tags: , | Leave a comment

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