Expressing Joy and Perseverance Through Art

Hello, my name is Sonja. I have relapsing-remitting multiple sclerosis (RRMS), but that doesn’t stop me from expressing myself. I’m excited to share my story and experience with Express4MS.

For as long as I can remember, I’ve loved to do arts and crafts to express myself. When I was a little girl, my mom would get so mad at me for drawing all over the walls, but what can I say—I wanted to spread a little color to every part of my life. As an adult, the artist in me was put on the back burner.

I was diagnosed with MS when I was 28 years old. One day, I woke up and my leg felt heavy. I told myself that I was probably just working too hard. But the next day, it quickly became clear something was wrong. My leg was still dragging behind me when I tried to get out of bed, parts of my lower body seemed numb. That’s when I decided to go to the hospital where I went through a series of testing, from MRIs to CAT scans, and learned that there were five lesions on my brain. I didn’t know what that meant at the time, but it didn’t sound good. The doctor told me that I had MS. I had just bought a house, I was raising my infant daughter, and working 2 full-time jobs plus 2 part-time jobs—talk about busy! I was working in my dream salon and building a life for myself.

I had spent so many years working multiple jobs and suddenly I found myself on disability, spending days at a time in hospital beds—but that’s when I found my art again. My mom would bring my drawing notebooks to the hospital room and I would just draw anything and everything. It helped me to pass the time and the nurses loved when I gave them my drawings as gifts. My love of art had never faded, but now I had the time to really focus on it and bring joy to others with my work.

However, I was still struggling with my MS treatments. I felt comfortable expressing myself with my doctor and based on that, he recommended I start a new treatment called MAVENCLAD® (cladribine) tablets. He told me MAVENCLAD was taken for 2 weeks in the first year and 2 weeks in the second year, totaling to only 10 treatment days each year. He explained that my treatment would consist of 2 pills once a day for 5 days in a row. I liked the idea of not having to take injections every week to manage my MS. An oral treatment that was just 10 pills each year was very appealing to me—especially the flexibility of being able to take it while I ate a snack. My doctor explained the serious side effects of MAVENCLAD, including the risk of cancer, low white blood cell counts, serious infections, and liver problems. During my course of treatment and after, I would still see my doctor for monitoring.

My doctor also wanted to make sure I was aware of the risk of birth defects if I were to get pregnant during the MAVENCLAD treatment. He let me know it would be okay to consider pregnancy after waiting at least 6 months after my last dose in year 2. My first day taking MAVENCLAD, I just went out and did things that I normally do. I painted a rock, painted a canvas, and took pictures of how I was spending my time. Each day was pretty similar. Before I knew it, 10 days had passed, and the first round of the treatment was done. Throughout my treatment process, I continued to take pictures of the different activities I was doing. Some people journal or take notes, but the pictures helped me remember if there were times I felt weak or times I felt good. And for the most part, I felt good. Of course, this is just my experience, and everyone’s will be different.

Now that I’ve finished both years of MAVENCLAD, I continue to make sure I’m following up with my doctor and paying attention to my health. If I ever start to feel like I’m working too hard or getting stressed, I try to take a moment for myself and focus on things I enjoy, like cooking or my art.

Before I was diagnosed with RRMS, I felt blessed for everything that I had in my life. Now, I still feel blessed but in different ways. This journey has taught me to keep expressing myself through my art and that my future will be filled with love, support, and—once I convince my husband to build it—a new art studio.