Multiple sclerosis entered my life about 26 years ago. It was an abrupt introduction over a vision issue, but I assure you it wasn’t love at first sight. We were acquaintances for a long time, but have gotten much closer over the last six years or so as we have spent a great deal of time together. I wouldn’t call us friends, but we know a lot about each other and we’ve learned to co-exist.
During and In spite of our relationship, I have enjoyed what I consider to be a wonderful life. I have had the good fortune to be married to a solid husband who raised three incredible children by my side and who continues to love me in spite of watching me transform from a strong capable woman into a frail and needy one. I have purpose in my days and comfortable sleep at the end of them. Even so, I miss the active life I had and the many people who filled it. This is not the car I ordered to make the journey in. The path I’m on is not the straight one I envisioned, but if I hadn’t been on this road, there is a lot of scenery I would have missed.
“I liked myself as I was before all this happened and I miss being that person. My life is nothing like what I would have chosen or hoped for myself and I think I have plenty of justifiable reasons to complain. I try to allow myself to complain without guilt. There are some moments when I feel enough contentment that I verge on happiness, and, everyday, I do the best I can.” Julia Graham NMSS, Inside MS Apr-May 2006
“Two little voices in my head kept going back and forth, and though I wanted to persevere, I knew I could not do the things I used to do, at least not the way I used to do them. I had to find a balance between optimism and realism, between perseverance and possibility.” Susan Hernandez. InsideMS Jun-July 2005
“Parkinson’s disease is a disease where some insidious creature works its way into your brain like a termite in wood and sets about a struggle to see which one of you is going to control the muscles in your body. I don’t have any idea what kind of creature this is, so I call it “Mr. Parkinson.”…. Each morning, I open my eyes and I say ‘good morning, Mr. Parkinson. How’re you today? Then I make a body check on all of my muscles and limbs to see which of them he has agreed to let me operate today.” Eldred (Pinky) G. Heidschmidt as told by William Janz
“Information processing slows down and simple tasks become a Mensa puzzle. I keep myself organized and ready to face my world everyday. This cuts down on the fluster and confusion factor that can compound cognitive fatigue. “ Mona Sen in Overcoming Obstacles msconnection
A way a kid explained MS – “My mom has MS, so she can’t run. Her brain doesn’t get the message to her feet. It’s not her fault.”
About asthenia – “feels like an extra gravity field directly under wherever I am, pulling me down and making everything heavier and harder, including mental processing.” Unknown
“So people with MS learn how to mix exercise with rest, how to balance ambition with caution.” Martha King, Editor InsideMS July-September 2004
“Don’t you dare be caught rejoicing with those who weep. Weep with those who weep.” -Joni Eareckson Tada
Eloquent desciption of the emotional affects of progressive MS by Marc a/k/a Wheelchair Kamikaze: http://www.wheelchairkamikaze.com/2009/07/problem-with-progression.html
What detours have you taken in life and how have you learned to navigate the new road?