Living between art and multiple sclerosis
This isn’t meant to make anyone feel sorry for me; it’s to shed light on what isn’t immediately visible.
When someone says to you, “But you don’t look sick” or “You look fine,” they don’t see the loose wires; nobody can.
I was a smart girl in school, and I liked to excel academically. My photographic memory allowed me to remember exactly which page and where on the page was what I needed. This was complemented by my ability to learn just by hearing, which meant I didn’t need to take notes. I also, enjoyed my ability to remember lessons without any problems and excel in exams.
Something changed
But in my fourth year of college, I realized something was wrong with me; I couldn’t concentrate, I was tired all the time, and suffered from extreme muscle fatigue. This translated into a lot of anxiety and depression. However, it turned out to be my thyroid; so, my physician told me it was hypothyroidism.
I started my treatment right away; I didn’t want to wait; yet my body didn’t respond to the different doses of the mediation for about two years. By this time, I had already drop out of college, which in turn reduced my stress levels and, consequently, my symptoms improved and even my thyroid started to stabilize. However, my limbs continued to go numb, and the severe headaches did not decrease.
Nevertheless, anxiety returned because I had too much free time. Therefore, I went back to college for a technical degree to try to get a job. This time, college was too easy for me because it was a different style of education; its purpose was to graduate as many students as they could ready to enter the workforce. I excelled again, but my headaches were getting worse, and the numbness in my limbs did not disappear. However, my doctors insisted it was severe migraines and uncontrolled thyroid.
Still
Fortunately, I got the job I was looking for and I liked it a lot. Although it was true that stress was too much most of the days, it was nothing I couldn’t handle. Then, without any conscious effort on my part, I lost 68 pounds (which I later regained). In addition, dizziness started with tremors, and my headaches intensified.
My memory wasn’t the same either. I’ll tell you that at work, I developed the ability to remember not only a patient’s name but also their record number, phone number(s), and even their insurance. Suddenly, I couldn’t do it anymore. Also, it became extremely difficult for me to understand basic instructions; sometimes I even forgot how to get home.
An urgent call
Then, the day came when my body got tired of sending me messages and urgently called me: a headache so intense that I would have honestly preferred my head to be taken away; I also suffered from facial paralysis that forced my eyes to stop working together. Then, within two to three weeks, I lost peripheral vision, hearing in my left ear, strength in my left limbs, and sensitivity on the right side of my body. Then, the ability to walk.
Four months after that urgent call, three visits to the emergency room, one hospitalization, infusions, two CT scans and four MRIs of the head, countless tests, including an uncomfortable lumbar puncture, and visits to several specialists, on July 16, I was told it was multiple sclerosis. While I have to admit that this disease is unpredictable, it was a relief to know what we were dealing with, but this was only the beginning.
However, losing the ability to make decisions was one of the things I suffered the most because it meant, among other things, that I had to stop working and, in a way, lost sight of who I was because I realized that, at least in this part of the world, we link what we do for a living with our identity. For many, if you don’t have a profession, you’re practically nobody.
Then, it came
Here is where art made its way into my life or, let’s say, save it. I needed to occupy my time with something, to “get out of my head” because I spent too much time remembering that I was no longer the same person and of what I could no longer do. So, as I have always liked art in its different forms, I took a risk and started creating with the materials I had on hand. Took some workshops online and some more free classes to have the basics of how to work with acrylics, and started full of fear of failure (not the right attitude when creating, but I will tell you about it in another post).
The first painting I made I gave to my husband, who has supported me from the beginning and spoils me a lot as far as his possibilities allow him to. It was of a white lighthouse in front of an orange sunset with the silhouette of birds in the distance. Honestly, I wasn’t very sure of what I was doing, but I took a chance and did it.
It’s true that it’s difficult to understand, and I may look fine on the outside or not seem sick, but the truth is that those of us who suffer from a disease like this don’t know how our days will go. If we are sure of something, it is that our art, a reflection of who we are, will always look good.
