My Transverse Myelitis Story

By Gracie (age 13)

The summer of 2016 is when my life changed.  Every summer I go to my dad’s house in Memphis, Tennessee for about six weeks, and it was almost time for me to go back to my mom’s in Colorado.  I woke up on Saturday, August 6th, not knowing what was going to happen later on that day. That Saturday afternoon is when my journey with Transverse Myelitis began.

It was a humid day in Memphis. I was playing outside with my miniature schnauzer, Sam. We do everything together. We were running and jumping and having a wonderful time. Then I noticed a dog was looking at us from the other side of the fence. Sam and I went to go say hello. I picked Sam up and he stuck his head over the fence and played peek-a-boo with the other dog. It was time for lunch, so we walked back to the house. While we were heading back to the house, I noticed a little pain in the upper left corner of my back. I didn’t think anything of it, so I just ignored it.

After lunch, we went to the grocery store. On our way there, I noticed that the pain in my back was growing. It was uncomfortable, but it wasn’t horrible. Still thinking nothing of it, I said nothing. Once we were in the grocery store, it was worse. I got in the basket because I didn’t feel like walking. Then out of nowhere it got so bad that I had tears in my eyes. My dad’s girlfriend noticed that I was crying and took me home. I was lying in bed, and I was in severe pain. I was vomiting because it hurt so bad. The pain was going away, but I had a tingling sensation on the bottom of my feet. Soon, I noticed that I could not move my left leg, and my right was very weak. I could not feel anything from my breast-line down. I thought that my legs just fell asleep, so I continued to rest.

About one hour later, my dad asked if I needed to go to the bathroom, and I said yes. He asked me if there was something wrong. I didn’t want to tell him that I couldn’t move my leg, but I had no choice. I tried standing up, but I couldn’t. A rush of fear swept through my body. We drove to the emergency room. They had no answers. The doctor just assumed it was psychological. I knew for one thing that it was not that. I was and still am a very happy, life- loving person. They did MRIs and found nothing. We went back home. I was terrified to eat because I couldn’t control my bladder and bowel movements.

The next day I had another MRI. This time they found something. There was a lesion on my spinal cord from T4-T6.  We called my mom, and she flew to Memphis. The hospital in Memphis wasn’t doing anything for me, so we had to do something else. My aunt’s best friend is a doctor in Phoenix, AZ, and she said I needed to be admitted right away.  We were hurrying to find plane tickets, so my mom and I could fly to Phoenix. Everything was happening so fast. I remember watching everyone, and for a split second everything was going in slow motion. It was like I was in my own little bubble.

Once we got to Phoenix, we stayed at my aunt’s best friend’s house for the first night. The next morning we went to the hospital, and I stayed there for three weeks. They diagnosed me with Transverse Myelitis the first day. They weren’t sure what caused it, but thought it was some kind of autoimmune reaction where my spinal cord attacked itself.   While I was there I received plasmapheresis, IV steroids, and one week of inpatient rehab. I was released from the hospital on September 3rd. School started September 6th. I was so happy because I would make it back to Colorado before school started. All I wanted was to be able to be there when school started.

School started and everyone was happy to see me. My friends were fighting over who got to push my wheelchair!  My friends have been with me every step of the way. I am very thankful for them. I have been stressed about school because I miss a lot of it. I get bad headaches, and sometimes I have a lot of pain. I only go to school half days right now because I get tired, and my back starts to hurt, but I have a tutor that comes to my house. The teachers have been so incredibly helpful.

About half way through the school year, I went to Children’s Hospital Colorado in Denver and received IVIG. I have gone twice to the Kennedy Krieger Institute in Baltimore,  Maryland for physical therapy, and I will be going back again in April. My favorite thing about going there is aqua therapy! I have also been going to physical therapy at home and riding my FES bike. I can still do a lot of the same things as I did before, it just looks different. I can dance, and I am learning how to use a sit ski.

I have gained all my strength in my right leg back. I am slowly getting more movement in my left leg and ankle. I am no longer incontinent. I have been setting goals for rehab, and each time I have reached them. And even though I have not gained any sensation back, I believe I will.

Sometimes I don’t want to do my exercises, but I want to get better, so I just keep on going. The past seven months have been very difficult, but my experiences are making me stronger. I have realized the more important things in life like setting goals and working hard to reach them. I am learning to be more patient, and that it is ok to feel frustrated and sad sometimes.  Someday I want to run again, and I believe that I will.

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  • Barbara Fearn

    Well done poppet , stay positive 💛