Don't Let MS Become Your Whole Life
After I was diagnosed with multiple sclerosis in 2010 I told myself that MS would not become my identity. It would not keep me from doing the things I loved; I would always find a way to beat MS and if I stopped doing something simply because MS was making it hard for me that would mean that MS won. I don’t like to lose. At first, I did really well at maintaining my hobbies but then again, at first, my MS really was not that bad. Occasional pins and needles, drop foot, stuff like that. My attitude was as positive as ever!
Now let’s fast forward to the present; I am sitting in my office chair browsing Facebook when a thought crossed my mind. Who am I? What do I mean by that? I mean what makes me ME? What is my identity? I decided to write up a list; I made 2 columns, one for “who I am now” and one for “who I was before MS”. First I attacked the “who I was before MS” list and that was easy, in fact, I had to stop because there was just too much. Then I moved on to the “who I am now” column. There was significantly less in that category and what was really depressing is that when I took away anything that had to do with multiple sclerosis there really was nothing left.
I have let MS become my identity.
I feel like I am in the middle of a huge identity crisis, without MS I don’t know who I am! When did this happen? After some thinking, I realized it was a very slow change over the years. Something got hard to do and instead of trying harder to find ways to keep doing those things or exercising my abilities to gain that function back I just let them go. One at a time until that “who I was before MS” list was gone. I sat down for a while and looked at all my old composition books from years ago that I used to sketch and write in. I looked at old folders full of writing, little ideas and sketches for fictional stories my friend and I were working on. Even a novel I was working on! Old pictures and “souvenirs” I kept from different places I have been or different things I have done. It made me feel like I was looking at someone else’s life. I was jealous of “this person”.
So now I have to figure out how to slowly work some of those things back into my life but instead of working from a 6/10 to get back to a 10/10 (or at least an 8) I have to work from a 1/10, maybe even a zero. It’s going to be much more difficult to start all over. “If you don’t use it you loose it.”
So what is my point here? Certainly not to just say, “Oh poor me”, no, I simply feel I should warn others of this slippery slope that is so easy to fall down. Learn from my mistake and spare yourself the extra amount of work I will have to do to get back to feeling like an individual who happens to have MS. Is something getting harder? Something as simple as writing with a pen and paper? Well, don’t just give it up because once it’s gone you will all of a sudden realize how much you miss it and could use it. I wish I could still write with a pen and paper and produce writing a little better than a kindergartener who needs that giant lined paper with the dashes down the middle. Practice doing what you can every day to keep it alive because if you don’t? It will die. Again, “if you don’t use it you loose it”.
Sure, there are many things I used to do that I physically just can not do anymore but at the same time, there is so much more that I could still do if I had been willing to accept that they would just be more difficult. I realize now that it would have been worth the extra effort because feeling like you have no real identity besides a disease is a pretty horrible feeling.
How many specialists did you see before finding "The One"?