At the age of fifty after recovering from a spinal fusion, I was diagnosed with Charcot-Marie-Tooth Disease, a neuromuscular disease that affects the peripheral nerves.
Shortly after I was fitted for an ankle brace and later four constructive foot and ankle surgeries. As I coped with all the changes, I noticed people began to treat me differently.
Being an independent woman, I didn’t know how to react when loved ones began babying me. It was hard for me to tell them that it made me feel more helpless than ever, but more than once like a toddler I’d say, “I want to do for myself!”
It seemed no one bothered to ask me what I wanted, even though I had no problem with my voice. I began to see I’d have to make some changes or I’d not be able to survive.
First, I decided to simplify my life thinking that would not be so hard. How wrong I was, it actually took me four years. I started by simply saying, “No!”
Because of a lot of pain and a low energy level I decided I needed to choose my friends carefully and let some go that were draining me. After waking up from a nap one day to the sound of someone screaming my name as they walked unexpectedly through my home, I decided from then on to lock the doors before I laid down.
Not only that, I made some changes with my e-mail and phone as well. I only returned the e-mails of close friends, and when I didn’t want to be disturbed I cut the ringer off on my phone and let the caller ID pick up the messages. When I felt rested, I returned my calls.
Another question no one seemed to ask was, “How can I help you?” Instead, they came to their own conclusions as to what I needed which usually was way off base.
For example when I came home from the hospital after my spinal fusion, I had to relearn how to walk again. Not only was it very painful but also difficult. More than once well meaning people would attempt to help me get in or out of a car, and I’d have to say, “No, thanks, I’ve got it!”
I’ll never forget the day I was standing in a crowd when a friend ran up and slapped me on the back saying, “Good to see you!” I almost buckled to my knees in pain.
As I look back, the hardest thing to deal with was getting people to really listen. Often I felt misunderstood. For example, each day I’d go to the grocery store so I could exercise and keep my spirits up. Even though I was having extreme muscle pain, I’d put on my makeup and get dressed up.
Invariably, I’d run into someone who would say, “How are you doing Glenda?” Before I could answer they would always say, “You look good!” On vulnerable days when I let my guard down and began to tell how I really felt I was bombarded with these kind of answers, “You know I have the same thing!”
Sometimes, they would simply change the subject to something trivial making me feel so alone and isolated.
At times like the commercial on TV about cell phones, I wanted to scream “Can you hear me now!” but I didn’t give in to that impulse. It wasn’t long, until I learned which friends I could confide it and which ones I couldn’t. I also found it was beneficial to go to a counselor to help manage my stress level since I had other problems in my life as well to cope with.
I also learned folks were only trying to comfort me but were not sure how to do it. They meant well.
I also found it was my responsibility to ask for what I needed which wasn’t easy either. And it was not easy to learn to say, “I’m sorry, I was having a bad day,” when I was irritable. I am still working on being kind and assertive at the same time.
It’s been five years now, and I’ve come a long way. As I sit typing this in my office filled with personal gifts and belongings that made me feel appreciated, I can look outside my window and see a female cardinal at the feeder.
In the meantime, I have a tape of Beethoven playing in my CD. When I tire of writing, I can sit at the other table and paint with my watercolors of oils. If I need a break I can call one of my caring friends who make me feel appreciated.
No, my problems have not gone away, they will continue to be a challenge, but I’ve created a sanctuary where I can go and rejuvenate my spirit. Yes, I’ve redefined my life. And to my surprise it is simple, peaceful and satisfying. It still amazes me how I was brought to this place in my life, kicking and screaming to find it suits me well.
How many people get to pursue their childhood dreams?
I’ve also learned to be very grateful for my friends and family and to realize they can’t read my mind. It is up to me to say, “I need your help!” And guess what, if they don’t hear me the first time, I’ll keep saying, “Can you hear me now?”
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