Multiple sclerosis has taken so much from me. Some things I don’t miss, but it is heartbreaking to discover that my ability to play the guitar is now one of them. I decided this week that I was going to get my guitar out to try and get my music going again. I was a really good guitarist playing for weddings and even played in a few concerts singing before thousands of people. I have missed it and was hoping I could get it going again.
There’s something amazing about a flower growing in a mess. Imagine all it went through to bloom: push through the surrounding crap, suffer more than most, yet finds strength to rise up & bloom where it is planted.
MS challenges can cause a lot of trouble and bring about a battle that I don’t always have the strength to fight. But somehow I gather enough strength to come up swinging. I refuse to let the struggle win.
Those of us using walking aids, wheelchairs and braces for some reason are seen as broken and a burden. We move much too slow, drop things way too easily and need help way too often with even the simplest of tasks for most people to bear.
It’s not easy living with a chronic progressive illness as you already know. Days can be so unpredictable and the limitations we experience can become overwhelming and heartbreaking. No amount of ignoring it, hiding it, or pretending it isn’t there is going to make it all go away.
You may see pictures of me smiling, but the truth is my nights are also spent crying. That’s right, MS isn’t the smiling face you see in those brochures or the victorious athlete crossing the finish line in those advertisements.
How do you balance a life that is constantly changing and where the unexpected is more expected than the chance of rain in today’s weather forecast? Each day with MS is an irregular experience filled with obstacles and booby traps. How do you balance a life like that?
Life with MS has a way of changing up on us. It doesn’t go as planned no matter how hard we try to force it to. And sometimes we try really hard.
Welcome the day and hang in there moving little by little until you’re able to push through the pain, tremors, muscle weakness and even the negative thoughts that have a tendency to show up out of nowhere.
MS invaded my life without my permission. It simply moved in and took over. It’s not something I can simply choose to no longer have around. If only it were that simple. To just say to MS, “Get lost.”
1. Simplify your life.