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Fight rare neuro-immune disorders. Together.
It all began with cramps in my hands and wrists. I was certain I was spending too much time on my laptop and cellphone. Surely, this was carpel tunnel.
But over time, the pain and the stiffness began to climb up my arm. Fearing that I was having a stroke, my wife took me to the emergency room. After nine hours, the doctors had no answers and even thought that I was having a reaction to illicit drugs that I wouldn’t admit to taking. If only it had been that simple!
I continued to have this strange lack of sensation in my right side, and like many men, I procrastinated instead of seeking help. It finally registered in my head that I needed to do something when I tried to take a bath and burned myself. Apparently, I had lost sensation in my feet and by the time I noticed that the water was scalding hot (and not ice cold), I looked like I had steamed lobsters for feet.
I went to a primary care doctor who immediately connected me with a neurologist. An MRI showed I had lesions in my cervical spine. Like many people with TM, I was given an initial diagnosis of Multiple Sclerosis. I was sent to the hospital three days before my wedding, pumped full of drugs, given a spinal tap (which came out negative) and sent home. I was broken, sad, scared.
There was considerable back-and-forth over my diagnosis. My lesions “looked like” MS lesions, but all other signs pointed to TM. Fortunately, I connected with the MS Institute at the Shepherd Center in Atlanta and the incredible Dr. Ben Thrower, who gave me my TM diagnosis. Finally, I felt like the cloud had been lifted. We knew what I had.
I regained use of my hands and feeling on the upper right half of my body, but the damage to my right foot and leg never healed. It makes hot tubbing a strange sensation — imagine half of your body is warm, and the other is cold no matter what you do! I still have the spider crawls, the pins and needles, the freezing feet and the stress related issues like sweats and anxiety. The drugs I take to help the pain have their own side effects too. And they don’t one hundred percent eliminate the pain.
What I’ve learned from having TM is to slow down. You don’t have to conquer the world. Take one thing, and one day, at a time. Find what you value most in life, and let other things pass. Find comfort in the love of those around you, find fellowship in those who also have invisible illnesses, and speak out so that others will know your story. For all they know, your story may one day become theirs. One day at a time, my friends.
A video of my story: https://www.youtube.com/watch?v=vm4FHq1mml0
Rabbi Patrick A. Beaulier
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