My Name Is Tom, and Here Is My Story
Last updated: November 2020
My name is Tom, age 49. I grew up in the Chicagoland area until I moved to Portland, Oregon after a divorce with my wife. I lived with my sister until I got my life back together.
My sister was diagnosed with MS
I noticed that she, in time, started complaining of issues. She would be extremely tired all the time, she thought at first that it was due to raising two small children. After a while she would talk of tingles in her feet and legs. Soon she had issues with her eyesight. She finally was encouraged by the family to see the doctor. Several, several tests later she was diagnosed with multiple sclerosis. We were devastated. At the time I wasn’t educated with the disease. I only knew of what I saw on television. Which consisted of people with horrible mobility or even being bedridden with feeding tubes. I was shocked, mortified.
Fatigue, tingling, and electrical sensations
About six months later, living alone and with a very happy job working with networks, servers, and day to day computer workstations at an educational facility. I discovered that I had trouble concentrating at work. Complex issues that used to be a simple thing for me, would wear me out. I had trouble when multiple people would talk for long periods of time. It would exhaust me, my brain would get fuzzy. I noticed in time that I too had tingles in my feet, my legs and arms. I had these electrical sensations shoot down from my neck to my knees when I lowered my head. I couldn’t for the life of me figure out what was wrong. Then one day, at my computer at home, I understood. I stopped what I was doing and put my head in the palms of my hands, I closed my eyes and sighed deeply.
How could I possibly be sick, too?
Everything that my sister described to me, every symptom, every pain, all came crashing down to me. Suddenly I knew what was going on. Suddenly I understood. But how? I asked myself. How could it possibly be that I was sick too? From the same family? What were the odds? I decided not to go the doctors until I was sure.
Then the seizures started.
My seizure experience
It was late at night, I was laying in bed, wide awake when I was struck by lightning. Every nerve of my body thrashed, like a live power line on the ground. Thumping, sending sparks throughout the street. My limbs shook, my body poured sweat. I couldn’t breathe. It lasted about thirty seconds to a minute, but it felt like an eternity. I lay there afterwords. I couldn’t move, I couldn’t think. My mattress covered In sweat. I knew then that I had to get help.
That’s how my journey started.
Diagnosed with PPMS
I was diagnosed with PPMS and at the time there was nothing they could do for me, so I walked away from the medical world. I decided to not tell a soul that I had the disease, not just MS, but the worst possible flavor. I saw how my sister was treated after she came out. People just treated her with pity or they stopped contact altogether. So, I kept quiet.
I was able to hide it until my mobility declined
I didn’t even tell my girlfriend who lived in Holland, as I moved there in 2005. I did not want to tell her before I left, as I was afraid she wouldn’t want me to come. I was lucky enough to hide it until 2015 when my mobility suffered to the point that it was beyond me trying to hide it.
In 2016 I bought my first cane, in 2018 I had to go to a wheelchair full time and in 2019 I was mostly bedridden, I say mostly, as I am able to sit up for about twenty minutes before severe pain kicked in.
In 2019 things got so severe that I had to go back to the medical world. It became too much. The pain, the sensations. Now I am on Gabapentin, Baclofen, and Tramadol.
Life is not over
Life is good though, no scratch that. Life is wonderful. I love it, I cherish it. I am filled with hope, love, and unending happiness. I write books, I also write for websites about multiple sclerosis, inspiring others, to give them hope. That life is not over, life has only begun, you just need to adapt to it. To change things ever so slightly. But your dreams, smiles and your love for this world, will never go away. As long as you keep fighting. As long as you keep smiling.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: