I dream of the day Multiple Sclerosis is cured…today wasn’t that day

I fell asleep last night in my recliner. I didn’t have the energy to make my way to the bedroom in order to climb into bed. I’m thankful that my recliner is comfortable. I didn’t wake up with any neck cramps or unusual body aches…at least none different than my normal MS aches and pains.

It would have been wonderful to have awakened 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 won’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.

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.

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 produce great work.

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 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.

Remember…your body’s weakness isn’t your failure. It’s simply a stepping stone to a new way of doing things.

7 replies
  1. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Hi Penelope another great post. Can you do some abstract paintings with your colour mess up, they could be great to see. Last Tuesday I got a suprapugle fitted and it seems to be alright but it’s now Wednesday and I’m getting a bit of something leaking out but I’m going to get it seen to this afternoon. The surgery seems to be ok and the muscle pain has gone. Even though it is a minor piece of surgery it is the first surgery I have ever got so for me it’s major and I’m still coming to terms with it. But it seems to be better than the previous method and more permanent for me as the MS has blocked the urethra tube causing retention in the bladder.

  2. Sharon
    Sharon says:

    Every time I read your post am in awe of what an incredibly strong bright woman you are and reminds me to pull up my big girl pants. Thank you for being so inspirational!💕💕


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