7:39 p.m. | Sunday, Jul. 28, 2002
I wanted to read before I knew it was possible and I just memorized books until I learned in grade 1. Iím never seen without a book, I take one everywhere even if I know I wonít be reading it, I just like to hold them. Books are definitely my passion and I canít stay away from bookstores and libraries.
The first event in my life that affected me deeply was my brotherís death. He died when I was 9 years old and thatís a young age to lose someone so close. I didnít even realize how much I really loved him until I lost him. He was a very exceptional child, and he could have gone so far in this world. I regret I will never see him grow up. He was 7 years old when he died. Iíll never forget the night I came home from a Christmas pageant at school or forget the look on my auntís face when she saw me walk through the door. Some expressions are indelible on your mind and some events you just never forget no matter what.
I was always a serious person and more grown up than those my age. I didnít attract a lot of friends this way and it got worse as I grew up. I wasnít into clothes or boys or shaving my legs or wearing makeup like all the other girls when I got old enough (is 12 old enough?). I mostly hung around with boys, but being unpopular they werenít really friends. I was a loner and still am. In high school I never really had many friends as I was tired or sick all the time. I found it hard to believe anyone would like me or take me seriously after elementary school. Friends I had betrayed me in stupid ways. They both wanted to be more popular than they were if they were hanging around with me.
The second major event in my life happened when I was about 14 years old. It had been apparent for a while that I wasnít a ďnormalĒ child. I was incredibly thin and weaker than the other kids my age. My mom had taken me to the doctor before, but they never really did anything. However, the summer after grade eight a nurse told my mom that it was not normal the way I was and to have me seriously checked out. After about a year of testing I found out I had a degenerative muscle condition and at the time was given about 6 months to live. The condition is called Pompeís Disease, Acid Maltase Deficiency or Glycogen Storage Disease Type 2b. Itís genetic. Obviously I survived the 6 months and more; soon after I was diagnosed a treatment of a high protein diet and moderate exercise was handed down to us. Unfortunately for me, not soon enough and I was hospitalized for 6 weeks in Pediatric Intensive Care (PICU). When I went into the hospital it was just for tests because my fingernails had turned purple, I was falling asleep mid-sentence and sleeping constantly. When they put me on oxygen I stopped breathing completely and they put me in PICU. It turned out I had double pneumonia as well as diminished breathing capacity and I wasnít eating enough to sustain myself. In that time I acquired a tracheotomy and a gastrostomy. I was sent home around Christmas time, but was back in the hospital numerous times for pneumonia. I wonít go into the details of the years after that suffice it to say it was very hard. I was getting worse every year, losing strength and ability. It seemed every year I would lose the ability to do something and I always thought it was my fault because I wasnít ďfollowing the programĒ (of a high protein diet and exercise) close enough. After high school, which mainly consisted of trying to keep up with homework all the time, I took 2 classes at university for 3 years. At the end of the 3rd year I totally broke down with depression. We had been renovating the house and my sister had been recently diagnosed with clinical depression. I was the one helping her throughÖ between school, renovations (which are hell if youíve ever lived amid them) and my own struggles with losing the ability to go up the stairs I just cracked. I couldnít function properly anymore. I slowly was turning my days and nights around and did in fact sleep days and spend my nights on the computer for one full year. Thatís all I did, wake up, go to the computer, get tired, go to bed. By the fall of that year (I think it was around 1997) my mom decided that it would be a very good idea to take me for counseling. I was put on Paxil and starting seeing a shrink.
The next year I believe it was I met this guy online. We fell in love as much as you ever can over the Internet and after knowing each other almost a year online he came out to visit. It turned into more than just a visit, he decided to stay. I wonít get into all the details, except that we lived with my parents for a year and a half and lived in an apartment together for about four months. In fact, the September before we moved was when I ended up in a wheelchair. We had become engaged the year before in October and had decided to get married in the summer of that year. When he left me we had actually started major planning for the wedding and had deposits on various things. It devastated me; also, that was the end of apartment life. Since he wasnít there to help take care of me there I had nowhere to live. Which begins another saga in my life.
The day he left we drove him to the airport and then drove me to the hospital. It was the only place I had to live at the time. My family couldnít take care of me and there was no place in a care home open. I was living the hospital waiting for a placement to open up, but since I used a respirator there was a very limited amount of placements that would actually accept me. I lived for 13 months in the acute care ward of the hospital. My window looked out on the back lot of the hospital where corpses were picked up by the funeral home, I quickly stopped looking out my window. There were many people whose heart stopped while on the acute care ward, many ďcode bluesĒ and doctors and nurses running down the hallway. After the first dead girl rolled by my door, I stopped leaving it open. I donít know how I lived in that place for over a year without going insane. There were many times when I just felt like letting go and they could move me on over the psychiatric ward.
After 13 months of waiting and fighting with home care to let my mom take me home (my mom had a mental breakdown and had to quit her job in order to take me back home) I finally got to go. It was a better situation but not ideal. I disliked home care and their methods. We also had trouble with them and continue to have trouble with them, mostly at the managerial level.
So I was home. Then we found out about this program in a care home called Parkridge (which I was technically still waiting to get in to), which was a longer term, and less hard working rehab program than the norm. I had tried rehab as an outpatient at city hospital after I fell.
I should probably tell you about that now. I fell in September of 1999. My knee gave out and I landed on my bottom. It had done this before and I hadnít injured myself, but this time I tore the ligaments in my knee and jarred my spine. It was so painful to move I almost threw up. My back was the worst; I couldnít sit up without pain for almost 4 weeks. I was in bed the whole time. By the time my knee and back had healed enough for me to attempt walking again I couldnít. That was the start of me being in a wheelchair.
So two years later Iím being considered for rehab at Parkridge, and I did get in. I worked my ass off. I did everything the physiotherapist told me. I shrugged off being tired as much as I could. I ended up being in that horrible place (it was basically a nursing home, an understaffed one at that) for six months. I only got one shower a week, until a few months of being there we finally lobbied for a second. I couldnít bring my cats up to see me (I had just gotten them that August, they were my babies) and I think thatís why they arenít as attached to me as they are others now. I had people take it upon themselves to butt into my life and try to run it for me constantly. The food was terrible. After 5 months at that place and not much functional gain (a gain in strength that increases your ability to do things) and a big decline in my mental health I was ecstatic to get out.
Fast forward to now. Iím in a wheelchair and on a respirator almost full time. That makes it very hard to get out and do the things I would like to do, like go to school or get a job. Iím not doing much right now towards anything I think of as a future. The best hope I have is enzyme replacement therapy, which is pretty much exactly what it sounds like. The enzyme Iím missing has been synthesized and Iím basically waiting until itís ready for the public. It might just be a cure. In any case, I wanted everyone to know where Iím coming from. I have been diagnosed with clinical depression. One day I want to go back to school and study forensic psychology. Right now I have muscle weakness and I get tired very easily so I donít think school is an option. I try to keep a positive attitude but that doesnít always work. So I just push on.
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Canada, Saskatchewan, Saskatoon, , English, , Female, 26-30, Reading.