If the worst day of my life was finding my Dad in the garage with a shotgun blast to the face then the 2nd worst day of my life was back in the early fall of 2009.
That night my new neurologist, who I’d never met, called me to tell that my MRI showed lesions on my brain. Based on that and my symptoms he diagnosed me with MS.
In one night I went from young and healthy with the entire world at my disposal to young and scared without a support system. Before that night I was having a health issue. After that night I would have a health issue for the rest of my life.
The day before my first symptoms appeared I could and did run a mile whenever I wanted. I would ride my motorcycle in numbing cold or scorching heat. I could throw a punch and better yet, I could take one. I could drink all night, fuck all morning, and get right back to it after a quick shower. I always sucked at sports but I still golfed, I still shot hoops with my friends, and played in the annual Thanksgiving day football game. I loved playing volleyball and for being of only average height I could play the net pretty well. My emotional instability was far more limiting than my physical ability.
My first flare up was roughly one year before my diagnosis. On that day I woke up with my first symptom; numbness on my right side from my ankle to my chest. I thought it felt odd. I lived with it for a couple weeks but it didnt subside. I finally went to a doctor who tried to get me tested for Hep B which was an absolutely ridiculous test to suggest.
So I started running and exercising again. I got back into great shape. Probably better shape then I had been even in college. The numbness went away and I was feeling great.
Then a year later, about a month before turkey bowl, I was on a business trip. I woke up in the hotel room and I literally couldn’t pull myself out of bed. Instead of waking up early and walking the show like I had planned I slept. I slept until the last possible moment. When I finally got up, I was frantic. I was thinking but I wasn’t actually processing anything. My eyes could see but my brain couldn’t process the input fast enough to make a clear picture. I got up and tried to go through the motions. I went to the show and tried talking to people but the commotion of the show actually frightened me. I decided to pack up the booth and head to UPS to ship everything back to Michigan. Only I couldn’t figure out how to get everything to fit in the boxes and I barely found the store. I ended up forgetting to pack a bunch of stuff. I remember being starving so I stopped at culvers on my way to the airport. Eating helped a bit so I thought maybe that was the problem and calmed down a little.
After a few days at home things went from bad to worse. I went to get my vision checked which proved to be pointless. The numbness came back and this time I felt weak too. Brain fog had made its home, the optic neuritis became unbearable, and I struggled to keep my balance.
I found a different GP and made an appointment ASAP. Right there in his office is the first place I heard it. “This sounds like MS”. He pulled every string and got me an MRI the next morning at 3:30. I went by myself, silently, and alone.
That evening I was at home, just me and the dog as it was most nights. My phone rang at almost 9pm. It was the neurologist. I had never spoken to him or met him and yet he called me at 9pm and offered to stay on the phone with me. I didnt know what to say or how I was feeling. I hung up and extreme sadness took a hold of me. Sadness, anger, and loneliness. The dog came to me, I hugged him, and I cried.
I cried because I was scared and in mourning. I had found out I was going to be a dad a few months earlier. My body sank and my mind spiraled. I had wanted to be a dad for so long and now I didn’t know if I would be able to. Would I be able to play with her? Could I pick her up? Would I teach her to ride a bike? Could I help her with her homework… could I walk her down the aisle and give her away? Would I be able work? If not, how would I take care of my family? At 30 years old I was mourning the loss of my own life and unsure if there would be one to replace it.
Every single day since that morning in the hotel I’ve felt symptoms of MS. The numbness, balances issues, weakness, and brain fog never really went away and the optic neuritis left its mark on my peripheral vision. I feel better and can lead a life but the old me is dead. I won’t ever know him again. I am reborn and though I feel ok, the daily, hourly, minute by minute reminders of this disease are haunting.
The loss of a life sent me into depression. I second guessed myself for years. Wondering why couldn’t I just “run it out” again. If it’s too hot, I cant ride. If it’s too cold, I cant ride. I need 8 hrs of sleep minimum but I can never get more than 5. I dont have the physical stamina to walk around the block let alone play a competitive sport. I cant tap either of my feet, literally.
Everyday the symptoms remind me that I have MS. Its either a stumble, a quick loss of balance, struggling to remember the name of a co-worker, not being able to play tag with my kid, or any other completely mundane daily task that every other person can easily take for granted and why the fuck does it always fucking feel like my socks are bunched up under my feet!!!!!
I want to run and jump. I would give anything to be able to fuck like I used to. I want walk without worrying how far I can go. I feel stress as weakness, heat as numbness, and cold makes my body lock up. Extreme emotions can make me collapse and yelling makes me lose control of my arms.
I’ve learned to not fight this disease. Fighting gives it power. What I’ve learned is that there is a part of me who has MS and there is a part of me that doesn’t. Those two parts love each other and take care of each other. I talk to God and I talk to my body. I remind the MS that I know it’s there but that it cannot stop me. I meditate and ask my body to seek out the MS and put it to sleep. I pray and I ask God to give my body the strength it needs.
More Fucked Up Than You 