Tag Archives: wheelchair. disease

I would wait for you…..

I have multiple sclerosis. MS is a disease of choices. You can choose to live, or you can choose to have a life. It is also a disease of adaptation. You can adapt to fit the world around you, or you can force the world to adapt to you.

I know this all sounds very confusing but I will explain. When I was diagnosed many years ago I was given a choice. I could curl up in a little ball and feel sorry for myself, or I could take hold of this disease and wrestle it to my will. I may not be able to control the course of this disease, but I can control how I deal with it.

I can no longer walk. Does that mean I no longer go out? Not a chance. I do have to adapt somewhat. I have wheels and trust me they ain’t half bad! I can go quite a distance on my own or I can take a bus, they are outfitted now (at least it Oakville) There are cabs that can accommodate wheelchairs and scooters. So you see there really is no reason for me to lock myself in my room.

I understand that there is some concern about how people in wheelchairs are perceived. I have had several incidences where I had to deal with other people’s perception of my abilities, simply because I’m in a wheelchair. I left no doubt in their minds that I am a person. I am not a wheelchair. I use a wheelchair the same way you use a pair of shoes. Do the shoes that you put on your feet every day define the person you are? No, of course not! In exactly the same way the fact that I’m sitting in a wheelchair does not define who I am. It is simply part of the definition.

When I’m faced with an activity that is difficult I identify exactly what it is I want to accomplish. And then I find a way to make it happen. Let me explain. I used to type. Actually that was part of how I made my living. I was quite good at it. When my disease progressed to the point where I could no longer use my hands effectively, I had to find another way to type. I was introduced to a program for my computer that allows me to speak and the computer to type. I love technology! So I continue to write to my heart‘s content.

Another issue I faced was my kitchen. The cupboards above the countertop were impossible for me to reach. So I adapted my kitchen. I had a small shelving unit built to fit along one wall and placed in it all the items I use on a daily basis. Problem identified, problem solved.

One of the things I have maintained since I was first diagnosed was that no one knows this disease better than I do when it comes to me. I have doctors, physiotherapists, occupational therapists, nurses and pharmacists who are my support. I have the final say. There are no books on how to deal with multiple sclerosis that were written by me or for me therefore they are not about me. They are simply sources of information I can choose to apply to my circumstances or to ignore. The choice is mine.

You need to understand that I have a good life.  You need to understand that I have an incurable disease that limits some activities.  You also need to understand that I am not going to apologise for causing you to step aside or wait or a second or two.  If our roles were reversed I would wait for you.