Hello and welcome back, or if you are new here, welcome! If you’ve been around and read a few of my blog posts, you likely know that it took me 44 years to get my diagnosis of Bethlem Myopathy, a form muscular dystrophy. I could look at those 44 years as a lot of wasted time. There was a lot of wasted time, money spent, seeing all kinds of doctors, all over the place. Or, I can reflect on that 44 years and look at all of the important life skills I learned in the waiting. The truth is, there is often pain and struggle in the waiting. There is a lot we can learn from our most difficult moments. After all, we are usually a captive audience to our pain in life.
Patience is the first life skill that comes to mind. I wonder how many hours it would total up if I could add up all the hours spent waiting on doctors, or test results, or for my body to heal after surgeries? A lot of waiting that was out of my control. Patience with new doctors, explaining my symptoms over and over and over. Often times, first the medical student would come in, and I would have to start from the beginning with them, and then also again with the doctor. Who knows how many times I’ve had to explain my medical history? Hundreds? I got so sick of repeating it, especially because I knew it likely wasn’t going to get me anywhere. However, I knew they were just trying to learn, so I tried my best to patient with them.
I learned how to deal with gut wrenching disappointment. Time, after time, after time. Each new doctor I would see would give me hope that they would finally be the one who could diagnose me. They would throw these diagnosis names out there, telling me, yes they think that’s it. Only to tell me a few visits later, after a few expensive tests, no I’m sorry, that’s not it. Often times, so nonchalantly saying those words. Not realizing the weight of their words. Each time that happened, I got so excited. I would obsess on the prospective diagnosis, taking on all of it, thinking to myself, yes I think this is the one! Finally! To have to sit and listen to those words, while smiling and saying “it’s ok we will keep looking,” when really, I wanted to scream and make them feel my emotional pain from the constant let downs. Each time was a grieving process for me. It felt like no one could understand my pain. That disappointment I really felt. I always felt so embarrassed too. Mad at myself for getting my hopes up. That part of the process made me begin to doubt in all areas of my life. I struggled with trusting others. My guard was up. No one was going to hurt me like that again if I could help it. Because of this, I do still struggle when I get good or happy news. I’m always afraid it won’t last, or it will be taken away from me. I’m still working on healing from that. Making progress.
I learned how to live with the unknown. My life felt like this long black tunnel. Never knowing what would come next. I wonder if that is where my anxiety was born? Likely, at the beginning of the pandemic, you felt something similar to what I lived with for so long. Not knowing. Not knowing what was to come next, but knowing you didn’t like how that felt. It felt out of your control, scary. All encompassing.
Persistence. When I was a child, it was my parents who were persistent. They, of course, wanted answers as to what was causing their child’s muscles to be so weak, and they didn’t give up. As an adult, when I left home, it was up to me. Did I want to keep searching? Of course I did. I was persistent. If one doctor couldn’t help me, I moved on. A persistent spirit won’t allow you to give up until you’ve reached your end goal.
Out of all of these lessons, the most important things in my life were also born. My faith, and hope. It kept me alive. Without them, I most certainly wouldn’t still be on this earth. When I was younger, I didn’t even know what it was exactly, but I had these things. As I walked deeper into my life’s journey, I realized that hope was that little flickering light. The light that at times was almost impossible to find, but there it was, always encouraging me to keep going. At my lowest of lows, when I was about to just give up, my faith saved me. It wouldn’t allow me to give up.
My faith, hope and humble courage were woven together. Literally holding me together. Making me brave enough to put my feet on the ground for another day. Through all the disappointments and times of being misdiagnosed, I never truly gave up hope that I would someday get correct answers. Those around me, supporting me, believed it too.
If something in your life is taking a lot of time, and you aren’t getting the answers you were hoping for, I would encourage you to not give up. I believe we all have a unique plan for our lives. Sometimes, in that plan, there are long periods of waiting and learning. Don’t miss the message. Have faith, keep moving forward. 💚
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