We have all experienced difficult seasons in our lives. Seasons when living in the moment, we think, how am I ever going to get through this? It’s unbearable. There is just no way!
Then, somehow, we get to the other side of that difficult season and look back on it, often in awe that we were able to survive. It boggles the mind.
I live with a rare form of Muscular Dystrophy called Bethlem Myopathy that took 44 years to finally diagnose. I have always been affected and suffered from muscle weakness and difficulty walking but have only had a name for my disability for about five years now. During those 44 years, I was determined to find answers for what caused my weakness and physical difficulties.
Getting to the other side of that search, I have had some time to reflect on that time in limbo and so much uncertainty. At times, the pain and frustration of not knowing consumed me, and no one around me truly understood my emotional struggle. It was difficult in many ways for my whole family.
Now that I’ve reached the other side, I often find myself reflecting on what those 44 years taught me. I really, wholeheartedly, believe that was exactly how my story was supposed to go. It was all part of my life’s plan. I think about it a lot. There is so much to reflect on and see from this new perspective.
The kindness of others during that time is something that keeps surfacing in my mind, and recently memories of hair washing of all things!
Hear me out.
I would spend a week or maybe a little longer in the hospital after each of my many surgeries. I always came out of surgery with a cast, sometimes on both legs. I couldn’t get out of my bed to shower or do other things until I was a few days into my recovery, plus I couldn’t get my casts wet so it made bathing tricky.
One of the things my mom would do for me, along with the nurses, was to find a way to wash my hair because that just makes everything feel better, right?! So, they would maneuver me to where my head would hang off the edge of the bed and they would wash my hair over a small bucket of water. It wasn’t pretty, but it got the job done. Once, after I came home and was recovering when I was a teenager, my mom had to be out of town. My sweet aunt volunteered to come over and wash my hair for me, while also maintaining my privacy and dignity that was at risk when needing help with bathing.
Now, I look back on these moments as such beautiful acts of kindness. People holding me up, helping me through. That’s how I got through it.
Along the same lines of my hospital stays, another memory is that every time I would be in the hospital, my classmates would make me cards and send get well wishes. “Get well soon, we miss you!” I loved receiving those messages from my classmates. It gave me something to look forward to when I would be away from my peers. It helped me feel like I wasn’t missing out as much. It was kindness. When I would return to school, the big thing was that they would all take turns signing my casts.
I could go on about how others’ kindness touched and shaped my life over those 44 years when I was in the thick of uncertainty. How blessed I was that I was never truly alone. I didn’t appreciate it enough in the moment, as is frequently the case in life. We are too caught up in other details to really appreciate what is happening around us, for us.
On the other side of the search, it’s not that things aren’t still difficult. They are. I live with a progressive muscle disease that slowly robs me of my physical abilities. However, being able to look at things on the other side of that difficult season of searching has truly changed things for me. I’m so grateful for this viewpoint, and for all the kindness shown to me along the way.
Until next time …
Amy Shinneman is a former National Ambassador for the Muscular Dystrophy Association, disability blogger, wife, and mom of two boys. You can find her blog at humblycourageous.com and reach her on Instagram @ashinneman.