It would have been wonderful to have awakened this morning to a life without multiple sclerosis. I dream about that sometimes. I think it’s more wishful thinking for me than anything, but who knows, if not today, maybe tomorrow. There’s always hope for tomorrow.
And even if a future cure won’t give me back my mobility due to continued atrophy in my brain and spine, if it will help the newly diagnosed patients or those with less progressive types of MS, I would gladly jump for joy…even if only from the inside. I would celebrate along with everyone. That would be a monumental day.
I never grew up dreaming that I would have a life with a chronic illness filled with constant weakness, problems and pain. I don’t think anyone does that. On career day, multiple sclerosis wasn’t even an option put in front of me. I wanted to be a teacher, a singer and a graphic designer. What a crazy combination, right? I would have been able to sing and illustrate my way through a classroom. (grins)
Now, because of MS, I don’t speak well enough to teach, my singing voice can’t squeak out a proper note to something as simple as Mary Had a Little Lamb, and the color clarity in my eyes is all screwed up causing my art to be a bit off. But you know, I still use those skills. I just use them in different ways now.
My speaking has become best understood in its written form. Writing my thoughts down gives me enough time to pause in order to keep from jumbling words up too bad. I still make a ton of writing errors, but they are easier to correct than losing my train of thought in the middle of a conversation. It’s actually quite comical when I jot something down on the computer then go back and read it puzzled wondering what was I thinking. That really happens.
Singing is now a long past memory and my hands are much too weak to play the guitar. (I was a classical guitarist at one point in time.) When I try to sing, it sounds more like a wounded cat than an intelligible song, but that doesn’t stop me from humming a tune when my heart is glad or from enjoying the beautiful music others create.
As for my graphic design skills, it just takes me a whole lot longer to create something that I see in my head. I find that I have to rely more on learned color theory than my actual eyesight and I have to be more patient with my hands when they won’t stay steady. That makes it a challenge, but somehow I still get things done.
Because of MS, I have learned to appreciate the things I am still able to do. I can’t let the fact that I can’t do something now get me down. There’s always a way if I get creative enough.
Don’t lose hope in finding an alternative way to use a skill you’ve built out of passion. Never stop pursuing your dreams just because multiple sclerosis gets in the way.
Give yourself the needed time to grieve your losses but never lose the ability to dream. Those of us with disabilities are some of the most creative geniuses around. Just look at how well you have already adjusted your way of living to compensate for a weakness.
I have created some of my own ways of doing thing in order to stay more independent. For instance, I have a rope hanging on the door knobs of several doors in my house, my front door being one of them. It’s actually a rope curtain tie back. I use the rope so I can pull the door closed as I leave the room in my wheelchair. An electric door would do wonders, but I made my own door closer that works pretty well for me. It gets the job done at a fraction of the cost.
Remember…your body’s weakness isn’t your failure. It’s simply a stepping stone to a new way of doing things. Go out there and conquer your day today even with a disability, in spite of multiple sclerosis.