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.