March is MS Awareness Month.
As told by Shannon Shelton Miller
In 2016 I discovered the world of aviation. A friend posted about the class on social media, and when I arrived I found myself in the corner of a typical gym. But there were beautiful silks in that corner, and I was obsessed with the craftsmanship from the start.
Four years later, I was under significant stress after moving out of state and working a difficult job. One day in the spring I woke up and couldn’t feel anything from my belly button down. I was such a type A and such a workaholic that I still got up, opened my laptop and went to work. I didn’t tell anyone what I felt and just thought I must have slept in a strange position.
However, as the week progressed, the numbness continued to spread, moving from my legs down the left side of my body to my face. I also suffered from dizziness which affected my vision. I knew something was wrong.
I called my GP, but this all happened during the coronavirus crisis, so my appointment was virtual. She listened to me and even spoke to a colleague who had studied neurology and suggested I get an MRI. Looking back, I’m so happy I ended up with this provider – she and her colleague were fresh out of school and I think that’s why they were willing to listen and dig deeper.
The waiting time for the MRI appointment was three months due to the Covid backlog. It felt like an eternity and my symptoms continued to worsen. One day I felt dizzy and couldn’t get dressed without falling over. My fiancé helped me get dressed and rushed me to the emergency room.
In the emergency room, I urged her to get an MRI, but an older doctor replied, “Sometimes women get dizzy.” He flipped through the notes on my case and, seemingly out of the blue, added, “If you think it’s MS, you don’t have textbook symptoms” — and sent me home.
When I heard him mention MS, I realized for the first time that this could be serious. At the time, I didn’t know what MS was and was thinking about the worst-case scenario. I thought my dreams of flying and teaching were over. I even thought I was going to die soon. I told my fiancé that he doesn’t have to stay with me since we’re not married. If he wanted out, I understood.
Instead, we got married later that week. I didn’t know why I was trying to push him away. I guess I was scared, but he wanted to be there for me, to be my rock and my support, and he was that from the start. It didn’t hurt that his health insurance was better than mine, and we felt that whatever I experienced, my treatment would be expensive.
After the MRI scan, I was diagnosed with relapsing-remitting MS. The MRI revealed numerous lesions in my brain and spinal cord. Since then, I have had my case examined by neurologists across the country and they all agreed on the diagnosis.
2025 (Photo/David Tuman)
In order to continue flying, my body has built up neural pathways around the damage, which is why it sometimes takes me longer to process information – a message from my brain to my foot has to travel longer around the damaged areas.
I’m 35 now and although I’ve been relapse free for five years, my balance is definitely affected. I fell twice last year, but it took me five years to experience this. I know everyone has a different type of MS, but my symptoms came on so suddenly and aggressively that I was given highly effective, powerful disease-modifying therapy right from the start to help me recover from that initial relapse.
I’m thrilled that I can still do aerial photography, but I’ve learned to make adjustments and communicate when something isn’t right. If I feel dizzy, I don’t take to the air for safety reasons. I stay low with a rigged silk scarf and do more yoga or stretching rather than dance and flow. When I teach a class, I am very open with my students and the studio I teach at, Aeriform Studio. It is a very supportive and welcoming environment.
When it comes to aerial photography, people often tell me they wish they could do what I do. I think the photos people have taken make me look really cool and some days I can do really impressive things. Other days I can’t, and this year I’m trying to share more of my recovery and these slower days, as opposed to the images and videos of my art that don’t reflect my daily life.
For me, MS is an invisible disease, but I live with its effects every day. Before my diagnosis, I wasn’t particularly good at communication, which is ironic considering I have a master’s degree in communications. I learned that I need to communicate my needs. This might include asking my husband to walk the dogs in the morning because I’m feeling dizzy, or getting parking while working at my full-time job.
Living with MS has forced me to slow down and listen to my body. In my advocacy work with MS organizations today, I always tell people that you know your body best. If something is wrong, contact your doctor. If they don’t listen, contact another healthcare provider.
Your health is the most important thing. Keep going until you find someone who will listen to you. Advocating for yourself can be absolutely exhausting – but it’s worth it.
Do you have any real women, real stories of your own that you would like to share? Let us know.
Our “Real Women, Real Stories” are the authentic experiences of real-life women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect the official policy or position of HealthyWomen.
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