My MS is bad but that doesn't make me bad
My letter to me
By Eddie B – January 9 2015
Many letters start this way with the words “Where to begin”. I think mine should definitely start that way.
I was 16 when I was diagnosed with MS. Back in 1974 MS was not a very well known disease (okay let’s do the math 2015-1974 means I’ve had the disease 41 years and further doing the math 41+16 = 57 and that’s how old I am, it’s good to get the details out of the way). Oh, and I am male. Whether any of that makes any difference it doesn’t matter, but there it is.
My brilliant neurologist at the time (when I was 16) said here are some prednisone pills that I want you to take and it will make you feel better. HA! Well a little later on when I was 20 and in University I lost the use of my right hand and because of that I had to drop out of University and I went to see another brilliant neurologist who told me when I asked him, will I ever be in a wheelchair? He said NO but I definitely proved him wrong! When I was 21 I got a serious bad headache on the right side of my head and I lost most of my vision in my right eye. I went to my optometrist who then sent me to an ophthalmologist and she told me I have optic neuritis and there is pretty much of nothing that can be done. Well at least she was right because I still have optic neuritis in my right eye and my left eye is holding on. By that I mean it’s weak and not quite there yet and I do wear corrective lenses so I’m okay. Oh by the way I got use of my right hand back (in 1982) I went to computer college where I met the most beautiful person in the world who later became my wife and still is to this day 31 beautiful years later. My wife is the love of my life and I could not and would not want to be without her.
Okay let’s get back to the wheelchair thing. I was about 32 and I was walking around drunk as the saying goes with people with MS (anyway it did with me) holding onto walls and whatever else I could hold on to so I graduated to using a cane. I didn’t want just any ordinary cane, I got one that looked like it had a gun handle. Around age 35 I started falling down a lot so my boss at the time (oh yeah, I was working as a computer technical analyst and did so until the year 2001, more later) got me a wheelchair from the medical Department and I sat down in it and cried and cried and cried and he told me to go home so I drove home (I could drive no problem). So now I was permanently in a wheelchair. Would you believe that the officials at work built me a wheelchair accessible washroom and allowed me to park with all the executives (in the garage) and they also put door openers on all the doors that I would need to use. My work meant that much to them and they didn’t want me to leave (I guess I meant a lot to them to). I ended up getting my own wheelchair of course but I could still stand up and take a few steps which of course was good at home because we had to install stair lifts and all that jazz at home. So I’m not going to get into all of the details but I was able to work in a wheelchair for 5 years (I also got my vehicle with hand controls so I could drive better). Then came the beginning of the end. In October 1999 I got a major MS attack, I was transported to the hospital by ambulance. What did this attack do? Well I couldn’t stand up anymore, that’s nothing. I couldn’t see or eat or talk or move at all. I just lay in bed being pumped full of IV steroids. It started to help and I got all my abilities back and they (physiotherapy) were able to get me to be able to stand up and walk a little. And after three months I went back home and back to work. Then in March 2000 I got another attack and all the same stuff and I went back home and back to work after two months (it was a short one this time). Then in October 2000 I got another attack and after three months I went back to work yada yada yada. And then in February 2001 I got another attack and I was in the hospital for seven months and that was the beginning of the end. I’m not going to say more about all the other stuff that happened throughout the years (and there was a lot of stuff) since my last major MS attack except to say that I was put on Rebif so I haven’t had any more major MS attacks. I have lost the use of my hands and arms. The last major attack basically rendered me incapable of doing much of anything for myself. My beautiful wife has to wash me, catheterize me, dress me, shave me, shower me, feed me, basically take care of me as if I was an infant. The one thing MS has not taken away from me as my brain! I can still think for myself, talk for myself, make my own decisions etc. Even say a few lame jokes from time to time. I cannot stand on my legs at all so I am hoyered from bed to chair from chair to bed etc.. My wife is my caregiver and does it all for me. She works part time as a school bus driver, this is in order for her to have the time to take care of me and it gives her something to do outside of the house (me) and gives her a bit of income (I'm on long-term disability from where I used to work).
I use Dragon NaturallySpeaking software to type anything I have to type on the computer. That’s me now. What I will be like in a few years I don’t know and I don’t want to know but I personally think I will be all right because I am a fighter I don’t let things get me down even though some people say I should I say I shouldn’t. I have hope for a future without MS would you believe. I’ve tried multitude of pains of all kinds but as the saying goes “no pain, n move most love very o gain”. In other words everything that I’ve gone through as made me a much better person. I may not look like much of a person to most people but I mean a lot and look like a lot to one person and that’s the only person counts in my life my beautiful wife.
Anyway that’s my MS story I’m sorry it’s full of a lot of boring details but that’s part of me and each person has different parts that makes them a unique person.
That’s my story,
Does your employer provide workplace accommodations due to your MS?