Sharing my TM Story

By Felicia Aronsson

I got transverse myelitis on the 21st of August, 2008 at the age of twelve. 4-8 weeks before I got TM, I had severe pain in my lower back and difficulty getting in and out of the car, bed, etc. I went to my local clinic, but the doctor said that the pain was caused by my trampoline. On the day that I got TM, I was with my mom at a café and suddenly I couldn’t grip the cup I was holding in my hands. Shortly afterwards, we decided to leave and that’s when I couldn’t walk properly. I was tottering and I had to lean on my mom so I didn’t fall.

We got in the car and drove to the nearest children’s hospital. When we got there, my right arm and leg were paralyzed. I think it only took 1-2 hours before I was almost completely paralyzed – I could only move my lower arms up and down. It took a few weeks for the doctors to get the results, and both my parents and I were shocked and didn’t know anything. And like every other person who gets TM, I thought that I was going to be completely restored within 2 years. But that’s not the case if you get an inflammation in the spinal cord that breaks down your myelin sheath.

I was at the children’s hospital for 6-8 weeks before getting to a rehab clinic where I stayed for the next 6 months. When I got back to school and was going into 6th grade, it was a real struggle. I felt completely alone and like an outcast. And it only got harder when my so-called friends from elementary school started bullying me in 7th or 8th grade. This really hurt me, and I was even suicidal for quite a while. Things got a bit better when I started talking to other people with TM. It turned out there were a lot of people with TM in Sweden, which I was really happy about.

Things took a turn for the better when I started high school. I was finally able to start over. Today, I started college and unfortunately became depressed. I’m paralyzed from my chest down. I can only move my wrists, and my fingers are paralyzed. I can’t stand on my feet myself or walk. My legs are spastic. However, I’ve made quite good progress looking back at how paralyzed I was when I first got TM. 9 years later I can say that I’m not mad that this happened to me.

It was the human herpesvirus 6 that caused my TM, and like most cases of this spinal cord injury, the doctors had no clue why this happened.

Finally, I want to say that the best way to get more knowledge of this and share your story is to talk to others in the same situation. It’s also really good to join Facebook groups with other people with TM, as it’s a great way to get in touch with others.