Everything Changed
After my hospital stay, my entire life changed. Everyone treated me like a raw egg. I was not allowed to do much of anything anymore, and I developed many fears. My parents were afraid that everything wasn’t completely healed and that something could break out of nowhere at any time. I was no longer allowed to go out alone or with friends, and I had to come straight home from school.
I felt very ashamed of the corset I had to wear to stabilize myself. Everyone could see that something was wrong with me. I was no longer allowed to participate in sports activities at school. I began to automatically distance myself from everyone and everything. The questions, the looks, the special treatment; all that got on my nerves. I preferred to be alone with my imagination, which allowed me to become very creative and create a beautiful world in order to escape reality.
I was afraid of not growing anymore; after all, I was only 11 years old, and my spine was already damaged. Of course, I was also afraid of what that meant for my future. I shared my parents’ fear that bacteria could attack my lungs and/or spine at any given time. My greatest fear, however, was being in a wheelchair and on a ventilator. My breathing had drastically deteriorated, and I was often short of breath. Climbing stairs, even short ones, and walking short distances completely robbed me of energy and breath. I was quickly and easily out of breath—a total disaster for any singer. To this day, I find it difficult to hold notes for a long time. I was involuntarily in need of care.
The illness robbed me of my spontaneity, my freedom, my joy of movement, and my singing voice, but the worst thing was that it robbed me of my self-confidence and self-worth. I felt broken.
I thought I was no longer beautiful or lovable because of the corset I had to wear. I wore a lot of loose tops, which automatically made me look larger than I already was. In the end, I could hardly move for over a year.
An Illness Rarely Comes Alone
As if that wasn’t enough, I developed hyperhidrosis (excessive sweating). The cause was most likely my severe illness with TBC. After hospitalization, I had to wear a medical corset for a year to support myself. I wasn’t allowed to take it off. In addition, I had weekly physiotherapy. I was forced to wear the corset to stabilize my spine and exercise my joints. I had to relearn many movements.
On the right side of my body, I have a huge scar that goes from my hip to under my armpit. I still experience a lot of back pain sometimes, but I’m alive, I can walk, and my body is healthy again. A big thank you to our family doctor and my father. If it weren’t for them, I wouldn’t be here. I would no longer exist, at least not in this form.
Imagine you are on your way to adulthood, about 12 years old. Do you remember how embarrassed you were? And now think of every situation you were in that would already be embarrassing to you in a normal state. Now put yourself in my shoes, with TBC and hyperhidrosis, in those same situations. You would sweat profusely—so much so that you’d think you just came from working out. Some days it was so bad for me that it looked like I’d just come out of the shower. Now imagine not being able to attend birthday parties, weddings, or even normal get-togethers with your friends—let alone dance—because fear makes you sweat twice as much. I don’t know if it was a nerve pinch or if it was a delayed trauma. Either way, I couldn’t stand the heat anymore, so I often preferred to spend my time alone doing things that would calm me down and keep me cool.
