It felt like an out-of-body experience when my neurologist breezed in a little over six 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 did not feel what I was feeling. No one in my life did. They could not. 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. How so much of my time was occupied by pondering that lingering mystery. How with each passing year, the power of the unknown becomes increasingly painful, heavier. The notion that “someday” I might have an answer was slipping out of my grasp.
Except suddenly, it was not.
Not expecting this, 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 cannot jump) scream and cry, but I did not. I simply said, “of course I will spit in the tube and send it off for genetic testing.” “What’s 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.”
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 would not have to fumble my words to try and produce something that did not 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 had fumbled those words. Who even knows how many times I was asked that over 44 years? Feels like thousands. People are curious.
I would not 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 would not 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. It felt close. It felt different. Someone knew, and I did not yet. That was hard. Patience. I had sure been conditioned to be patient over 44 years. I could wait another few days.
Exposing our pain and vulnerabilities to others can be difficult, but I have learned in doing so, how healing it can be. When we witness and listen to others’ pain and their stories, we can gain valuable perspective and wisdom for our lives, and how we live. We become more appreciative for something we are taking for granted, or we can 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.
I have personally never known anyone who has waited 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. I’m happy to be able to share my story now that I have reached the other side. My family did not understand exactly what I was going through, but what they did do was support me on my journey of the search. I am sure at times their hope wavered just like mine did. It was impossible for my hope not to be shaky at times, but I don’t think I ever totally lost it.
This week I will celebrate the six-year anniversary of my diagnosis day. The day my world got a whole lot brighter, and I could finally breathe. There were lots of tears that day six 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.
I will make myself a cupcake, place a No. 6 candle on top, say a prayer of thanksgiving, and blow it out. Forever grateful that I am not living the nightmare of the search anymore.
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.