Jennifer

Diagnosis: Transverse Myelitis

Lima, Perú. It was the morning of November 28th, 2005. I woke up with extreme pain in my chest, back and arms. They were burning and felt like they would explode. I started panicking and couldn’t breathe for a bit. I tried calming down and the pain started going away but I still didn’t feel “normal.” I was 20 years old and until then, I wasn’t a “doctor” type of person. I didn’t get sick easily or often. I was the healthy one in my family. So I thought that what was happening was only a strong cold or something like that. By that night, I was feeling very heavy and just wanted to sleep. The next day I became worse, so we looked for help. I couldn’t feel my legs, I could barely move my arms and I couldn’t use the bathroom- my system shut down. My whole body felt numb and had a burning sensation all over, but it was even worse on my left side and both feet.  I didn’t want to be touched because it was intolerable! I was completely paralyzed from my shoulders down.

Unfortunately, at the first hospital we went to, the doctors didn’t know what I had, so they just kept looking at me terrified at what was going on and said that it was probably Guillain-Barré syndrome or something more severe. I even heard comments that I probably wouldn’t make it through the night. They didn’t seem to know what was going on, so I didn’t want to stay there since they just seemed lost. I went to another hospital and the doctors there didn’t seem as scared.  One of them (who later became my doctor) actually made me feel better and somehow I felt relieved just by talking to him. I stayed there for a month. At first they thought it could be Multiple Sclerosis, and during my time at the hospital it was an everyday thing where some doctors would try to convince me to have my CSF tested, but we didn’t let them do it.  I was afraid of it. They made me feel they wanted it more for their records than for my well-being.

During the day I was the happy girl I’ve always been. Some friends and family members would visit me at the hospital and I just showed a happy face and tried to keep positive and convinced myself that it would all go away soon and I was going to be different than the other cases around me.  The doctors kept saying I might not recover, and to not keep my hopes up about walking and being “normal” again, but I thought yes I will, no matter what this is I will get better and be my old self again. They kept testing me, but didn’t know what I had. No one at the hospital had TM.

I started taking corticosteroids and started making small improvements like getting movement back in my right hand. At least at that point, I could eat by myself with plastic forks. But that was basically it, nurses had to do everything else for me. It was the end of December and my family decided to take me out of the hospital even though we didn’t have a diagnosis yet. They didn’t want me to spend the holidays there, which I 100% agreed with. I was being faithful and needed that above all. Unfortunately being in the hospital, I had to deal with different types of people that weren’t mentally positive like I was. With my doctor’s permission I went back home, still with my body paralyzed and with my system not working by itself. It was like being in a “baby state” back at home, trying to relearn how to do everything again. I did therapy every day and kept going to the doctor for checkups.

In February 2006, I got diagnosed with Transverse Myelitis. Finally, I had a diagnosis! This made me feel relieved but at the same time scared with everything I read online. After months of therapy, I could finally sit by myself without feeling afraid of the ground and started crawling like a baby.  Basic daily activities were extremely exhausting, even talking or eating. At that point I was taking different types of medication to treat the spasms and also realized I was taking antidepressants which I wasn’t happy about, but they seemed to work. I was sleeping and eating well. My system started working again and even though I had to focus a lot I could pee by myself, and that was such a goal for me! Most days I would get out of the house in the wheelchair with my family’s help. I couldn’t manage the wheelchair by myself and my left hand and my left side in general seemed to be left behind and didn’t recover as fast as my right side.

As the year went by slowly, with a lot of effort and very much afraid of everything, I stood up by myself and my therapist told me it’ll get easier to stand up straight if I had a stronger back which meant also working on my abdominal strength. So, as soon as I could move my upper body enough I would work on my abs every morning. It worked and I started walking. First around my bedroom, then around the house holding onto things and falling a million times. It was a very slow motion walk and I would get exhausted from taking only two steps around and from all the effort I put into it, mentally and physically. I felt like I had run the marathon only by standing up. I had to actually focus very hard to walk, to learn to take the steps, to sit and every time I stood up to stretch so I could walk. At the end of the year I learned to use a cane and I felt safe and independent again…finally!

By 2007, I started gaining some muscle back and my weight wasn’t too much of “dead weight” anymore. I used a cane to help me get around and slowly tried to leave it behind. At that time, my life was almost back to normal. My arms and legs were working and I could do daily activities by myself. I went back to school again and began going out with friends. Even though my left side wasn’t as good as my right one, I managed to feel like my old self and my personality became more outgoing like it used to be. I felt stronger mentally and even though I wasn’t strong physically, I felt that I was. I made a promise to myself that I would not use the cane anymore in 2008, so I didn’t. I stopped using the cane, but was afraid of not using it to cross the street or for going up or down the stairs. It seemed that with the cane people respect your injury more, while without it they just think I hurt myself very lightly and then they wouldn’t be as careful. I got over it, I wanted to feel free again and not using any tool made me feel that way. My walking was still spastic, very slow, and had to stretch every time I stood up. But I was happy that I recovered enough to have my life back.

The years went by and I stopped taking the medications, my body felt great, my walking didn’t exhaust me as much. The burning and numbness sensations decreased, my left side didn’t recover as much as my right side did and I still limp (I’d say it’s 70% left side and 95% right side). There are things that I will probably never have back, like the temperature sensation. My body can’t actually tell if something is too cold or hot, which I find funny sometimes and see it as an advantage at the beach! I can’t run and my body hurts sometimes because of the compensation of my left side, but going to the gym has helped me a lot to get stronger and build endurance. Even though I didn’t recover 100%, I’m very lucky that I recovered enough to be able to do everything by myself now.

My life was going as planned before the TM. I was in college, had an awesome family and friends. I was a very happy independent person without any worries at all. I enjoyed doing things by myself, but also with company. I enjoyed going to the beach, going shopping with my mom and older sister and to the gym with my big brother. They were the support I needed when TM hit my life. Even though it was a tough time, I always knew it’d only be a chapter in my life and everything was going to be fine. Things are better than fine now!

Back in 2005, I became so dependent on my family, being the youngest daughter it made it seem like I was a baby again. My mother, sister and brother put me in this bubble that they didn’t want me to get out of until I was fully recovered, which I’m really thankful for to this day. Fortunately, in 2012, I met a great man who wanted to do the same and he became my husband. I moved to beautiful Wayne, Pennsylvania to be with him. And even though now I’m away from my family, I have an awesome extended family here that I love. I’m sure things wouldn’t be as great as they are now if I didn’t have TM. People say that life can’t be perfect, so I guess that’s what balanced it out. After it all happened, I became more outgoing, couldn’t wait to do more things every day, to travel, to enjoy life more! I became even more positive than before, more faithful and appreciative of the little things in life like eating by myself, sitting, dressing by myself, walking, showering – simple everyday activities. Back in 2005, I couldn’t even clear my tears by myself. Writing this blog, while I enjoy the beautiful sunset, is incredible to me. I’ve never met anyone with TM until this day, but that’s something I’d definitely love to do, to help others that have this illness to show them that your faith and positivity can do wonders for your health.

I used to wake up in the morning and think, “Thank God, it’s over! I can move my body now!” Now I’m just embracing every moment in life and I wouldn’t change anything.  To me it’s perfect as it is. I’m a very lucky woman, and I don’t take anything for granted.


Jennifer Simpson

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