Changes

Hello and welcome back, if you are new I’m glad you joined us! The deterioration of my muscles didn’t happen the way I imagined it at all. In my mind it was much quicker, more of an overnight thing. In my mind I’d go to sleep, and the next day I’d wake up unable to walk anymore. To me, it wasn’t a question of IF, but rather WHEN. Doctor’s were always saying all kinds of things that MAY happen to me. No one knew exactly, because I wasn’t yet diagnosed. It was confusing and scary for me. Maybe that’s why I was never a good sleeper. Going to bed each night with something like that on your mind doesn’t exactly promote restful sleep. I never really told anyone about those thoughts. I can remember thinking that from a very young age. Kindergarten maybe? 

I’m grateful that it hasn’t happened that way, at least not yet anyway. It’s more of a slow burn, watching something slowly go that you so desperately don’t want to part with. First, it was the cane that I needed. I remember the night. I couldn’t take it anymore and I gave in. I reluctantly told Jamie, I need to go to the store and pick out a cane. Saying those words were hard. I had to admit I was getting weaker. Those around me would say things like, oh you probably just overdid it, you will bounce back. No, I firmly told them. It felt different, impossible to explain. So, we loaded our little boys into the car and we went to Walgreens. I stared at the display when we got there and thought to myself, none of these look like me. I didn’t like the familiar feeling of being categorized. There were three options, and I didn’t like any of them. I let the boys pick one out for me and we left there, with me trying to keep a happy face, so my boys wouldn’t know the devastation I felt inside. I use my cane as I need it and have since found some that have a little more personality!

Next, a few years later, my scooter arrived. It was a God thing if you ask me. I had been really struggling with walking any kind of distances. Walking has always been labored, but this was another shift.  The cane wasn’t cutting it for any amount of ground that needed to be covered. Again, I felt noticeably weaker. I knew I needed to do something about it, but yet I really hadn’t voiced that yet to anyone. I had an old wheelchair that another aunt paid $1.00 for at a garage sale (shout out to all the awesome aunts!) and I used it after surgeries, or when I was injured. One Friday evening I sat in the living room waiting for Jamie to get home. I heard a commotion and looked up to see him coming through the back door riding a mobility scooter. “What’s that?”,  I said, clearly annoyed, shocked and angry.  He said, “oh, Aunt Alice had an extra scooter she no longer needed, and wanted you to have it, here come and try it out!” “No thanks” I said, as Jack ran over wanting to drive it. “Come on just try it!” he said. I was so irritated by his excitement. Reluctantly, I got on it and was instantly connected to it. It was weird. I felt relieved. My anger quickly turned into gratitude for his sweet Aunt Alice who knew it would help me, and for my husband who also knew I needed it. The very next day my boys had a cross country meet. I got to see more of their race than I ever had. I was overwhelmed with emotion. The freedom she gave me by gifting me that scooter is a beautiful thing. I was too grateful to feel defeated in that moment. That was 5 years ago. 

My first outing in my scooter 

I have a walker that I use at home for times when I need extra support, or to help me transport things that are too heavy to carry. I don’t typically use the scooter in the house unless I’m sick or injured, or just having a really hard day. It’s red, like the scooter (although I’ve since changed the scooter to blue 😊) I was looking at it the other day and thought the same thing I thought when I first looked at the cane display at Walgreens, it’s not me. So, I fixed it. I painted it black and covered it with painted sunflowers. There, that’s better. Now, it feels like mine. Often times, assistive devices all look the same. It’s nice to be able to express my personality through something often attached to me. I love to change things or update them to make them more my style. 

Fun weekend project 

If you are a new reader you may be thinking, she should be grateful she can walk at all. You probably don’t know that I am beyond grateful for the ability to be walking no matter how difficult it is. I fight for that each and every day. Relentlessly. I always have. I stop, and thank God often. I know many with Muscular Dystrophy who have never had the chance to walk. I honor it. It’s a gift. This is my journey though, and there are many like me who are still walking with MD, and who are continuing to lose strength despite their best efforts. That’s what this disease does. Robs us of precious strength. Think of it as working out every step you take. It’s really difficult. I will continue to humbly courageously fight this weakness head on. It’s truly my only choice. Keep going. 💚🌻

Bethlem Myopathy fact:

Bethlem myopathy can cause contractures which is a shortening or hardening of muscles, tendons or other tissue. My contractures were in both ankles and the reason for multiple ankle surgeries throughout the years.