One Fateful Day

Hello and welcome to another week at Humbly Courageous!

It felt like an out of body experience when my neurologist breezed in a little over 5 years ago, and casually tossed the genetic test on the counter on that fateful day. I remember thinking, “how can he be so nonchalant about something that has caused me so much pain and strife in my life?” I quickly realized that, of course, he didn’t feel what I was feeling. No one in my life did. They couldn’t. They didn’t know what it felt like to live for so long without answers. They couldn’t comprehend the magnitude of mental exhaustion something like that has on a person. How crushing that is each day on a person. How so much of my time was occupied by pondering that lingering mystery. How with each passing year, the power of the unknown becomes more and more painful, heavier. The notion that “someday” I might have an answer was slipping out of my grasp. Except suddenly, it wasn’t. I wasn’t expecting this, but immediately I was flooded with a tingling sense of excitement, mixed with a little fear that I, of course, may be disappointed once again. I tried to play it cool because if I showed my true feelings it may scare him. I wanted to jump up and down (even though I can’t jump) scream and cry, but I didn’t. I simply said, “of course I will spit in the tube and send it off for genetic testing”. “What is the cost?”, I asked, which was laughable because even if he said “one million dollars”, I would have told myself, “ok I will find a way to make that work.” Ha!

The thought of being able to answer someone with a solid answer when they asked, “what’s wrong with your legs?” was comforting to me. I wouldn’t have to fumble my words to try and come up with something that didn’t sound made up, or make me appear like I had no clue what was going on with my own body. It would be a simple answer. My whole life I fumbled those words, and who even knows how many times I was asked that over 44 years. Feels like thousands. People are curious.

I wouldn’t have to wonder what may be coming next, because I would be able to read about what to expect once I had a firm diagnosis. I could study and learn about what was going on inside my body that was wreaking all this havoc and heartache. I wouldn’t be left to wonder and live in fear of the unknown. 

The days between when I spit in the tube and sent it off, and when I finally got the email notice, “your test results are in and ready for your doctor to review” went by excruciatingly slowly. It was ALL I could think about! It consumed me on an all new level. It felt close. It felt different. Someone knew, and I didn’t yet. That was hard. Patience. I had sure been conditioned to be patient over 44 years. I could wait another few days, but still…gah!

Exposing our pain and vulnerabilities to others can be difficult, but I have learned in doing so, how healing it can be. I don’t mean just healing for me, but when we witness and listen to other’s pain and their stories, we can gain valuable perspective and wisdom for our lives, and how we live. Maybe we become more appreciative for something we are taking for granted, or we are able to look at a difficult circumstance with a new perspective, after hearing someone’s story. It doesn’t have to be the same story as yours to be able to gain a new way of handling something in your own life. 

In 44 years, I never heard of anyone waiting that long for a diagnosis. I know people do wait a long time, and that even a year or two of waiting is extremely difficult, so very frustrating and stressful. I’m happy to be able to share my story now that I’ve reached the other side. Maybe my family didn’t understand exactly what I was going through, but what they did do was support me on my journey of the search. I’m sure at times their hope wavered just like mine did. It was kind of impossible for my hope not to be shaky at times, but I don’t think I ever totally lost it. 

This week I celebrated  the 5 year anniversary of my diagnosis day. The day my world got a whole lot brighter, and I could breathe. There were lots of tears that day 5 years ago. Mostly happy tears, but also a few tears for what lies ahead. I choose not to dwell there too often though, and just live each day as it comes the best I can. Some are good physically, but many are not, especially as I am getting older. There are glimpses of lost independence, but I will keep fighting, humbly courageously. 

My husband gifted me with a poem of what he saw during my search. I will end this post sharing his beautiful words with you. A husband’s perspective. He has known me since I was 14 , so he was with me during a majority of my searching. 💚