Today I begin this blog with what feels real for me right now.
The hardest part of having to be in a wheelchair is my loss of independence.
This loss feels heavy, confining, scary and uncertain.
It’s mighty difficult at times.
I am 58 years old. I’ve been physically challenged as long as I can remember.
When I was three years old, the family thought I was copying my mother’s walk, as my mother also has this disease. Then it became apparent that I also had foot drop. My diagnosis is a type of muscular dystrophy called scapular peroneal atrophy or dystrophy. With this disease, my body has become progressively weaker as I’ve grown older.
This is the fourth diagnosis I’ve been given by neurologists. The first time I heard that I had muscular dystrophy was when I was 17 and had just had a body cast removed after 10 months due to a spinal fusion.
I remember clearly when the doctor said, “Have you heard of muscular dystrophy? You have a type called Charcot Marie Tooth disease.” Looking back on that, I feel the doctor chose a strange moment to tell me this.
I remember thinking about it while I was there in the cast room of the hospital. And then the thought vanished. I was focused on the excitement of getting the cast taken off and the tremendous ahhhhhh I felt. I couldn’t wait to get home to take my first shower!
The diagnosis came and went. I filed it away in my memory.
I grew up as the oldest of five in a hectic house. We had an unofficial open-door policy to friends and neighbors, so you never knew who was coming or going. There was little organization as we left for school and returned in the afternoons. We played with our friends and came home when mom rang the dinner bell that hung outside by the front door. Dinners were chaotic times with my parents’ daily yell fest.
Amid the activities of daily life, my physical difference was never talked about with my family.
Not once.
My dear mother was a great amount of support when I’d come home from school crying after being bullied. She would hug me tight and say, “Those boys are jerks. Ignore them like they don’t exist.”
I found her words to be ever so loving and comforting as well as extremely helpful. This is my only memory of any mention of being different. I grew up thankful that I was treated just like everyone else. This supported my inner- strength and my strong need for independence.
Now, since losing my ability to drive and being in a wheelchair full-time, I’m feeling more vulnerable. I’m fearful.
I’m afraid because I see clearly for the first time that my independence is slipping away.
Do you feel that your independence is being challenged? What do you do to find comfort? How do you bring joy to your days?
On this forum which I’m feeling very grateful to have, I’m hoping to reach out to you. Let’s have conversations about living with physical challenges in an able-bodied world.
This space isn’t only for my stories to be read, it’s to open a community for those of us that need support and want to share ideas. It’s a place for me to listen and learn as well as you.
What tools do you employ that increase your confidence and enhance your quality of life? Are you feeling terribly stuck? Maybe we can help each other going forward.
Anne is a Reiki Master with 12 years of experience. She’s married to a gem of a guy who’s a musical wonder and they have a 23 year-old daughter who sparkles like the stars in the sky. Anne lives by these sayings: “Put love in it.” And, “Put love at the table.” And one that first resonated with her heart some years ago: “Be of love a little more careful than of anything,” by E. E. Cummings. Email Anne at alessin60@gmail.com
