The summer between my junior and senior year of college, my mom and I decided to sign up for a fitness boot camp. Classes were held every morning at 5 a.m. One morning while on a run, I couldn’t feel my feet. Over the next couple of weeks, things worsened, and I knew it was time to see a doctor.
I visited several doctors who gave me conflicting advice. Several weeks later, I found myself at the hospital for another opinion.
The doctors told me I had multiple sclerosis (MS), a disease of the central nervous system that disrupts the flow of information within the brain and between the brain and body.
At the time, I didn’t know what MS was. I had no idea what it could do to my body.
But I knew I would never let my condition define me.
In a matter of days, a disease I once knew nothing about became the complete focus and center of my family’s life. My mom and sister began spending hours on the computer each day, reading every single article and resource they could find. We were learning as we went, and there was so much information to digest.
It sometimes felt like I was on a roller coaster. Things were moving fast. I was scared and had no idea what to expect next. I was on a ride I didn’t choose to go on, not sure where it would take me.
What we quickly discovered is that MS is like water. It can take many shapes and forms, so many movements, and is difficult to contain or predict. All I could do was just soak it in and prepare for anything.
I felt sad, overwhelmed, confused, and angry, but I knew that there was no point in complaining. Of course, my family wouldn’t have let me anyway. We have a motto: “MS is BS.”
I knew I was going to fight this disease. I knew I had an army of support behind me. I knew they were going to be there every step of the way.
In 2009, my mom got a call that changed our lives. Someone at the National MS Society had learned about my diagnosis and asked if and how they could support us.
A few days later, I was invited to meet with someone who worked with newly diagnosed young adults. She came to my house and we went out for ice cream. She listened carefully while I talked about my diagnosis. After I told her my story, she shared the opportunities, events, and resources the organization had to offer.
Hearing about their work and the thousands of people they’re helping made me feel less lonely. It was comforting knowing there were other people and families out there fighting the same fight I was. I felt like I stood a chance of making it, together. I knew right away that I wanted to get involved.
Soon, my family started participating in events like the MS Walk and Challenge MS, raising money for research and giving back to the organization that was giving so much to us.
Through a lot of hard work and even more fun, our team — named “MS is BS” — raised more than $100,000 over the years.
I found a community of people who understood me. It was the biggest and best “team” I ever joined.
Before long, working with the MS Society became less of an outlet and more of a passion for me. As a communications major, I knew I could capitalize on my professional skills to help others. Eventually, I joined the organization part time, speaking with other young people recently diagnosed with MS.
As I tried helping others by sharing my stories and experiences, I found that they were helping me even more. Being able to use my voice to help the MS community gave me more honor and purpose than I could have ever imagined.
The more events I attended, the more I learned about how others experienced the disease and managed their symptoms. From these events, I got something I couldn’t get anywhere: firsthand advice from others fighting the same battle.
Still, my ability to walk continued getting progressively worse. That was when I first started hearing about a small, electrical stimulation device people called a “miracle worker.”
Despite my continued challenges, hearing about other people’s victories gave me hope to keep fighting.
In 2012, the medication I was taking to help manage my symptoms started affecting my bone density, and my walking continued to get worse. I started to experience “foot drop,” a dragging-leg problem that often comes with MS.
Although I tried to stay positive, I began to accept the fact that I was likely going to need a wheelchair.
My doctor fitted me for a prosthetic brace meant to hold my foot up so that I wouldn’t trip on it. Instead, it dug into my leg and caused almost more discomfort than it helped.
I heard so much about a “magical” device called the Bioness L300Go. It’s a small cuff you wear around your legs to stimulate them and help retrain your muscles. I need this, I thought, but I couldn’t afford it at the time.
A few months later, I was invited to give the opening and closing speech at the MS Achievers major fundraising event for the MS Society.
I spoke about my MS journey, the incredible friends I had met while working with the organization, and about all the people the donations could help, whether through critical research or helping people receive technology, like the L300Go.
Following the event, I received a call from the president of the MS Society. Someone at the event heard me speak and asked if they could buy me an L300Go.
And it wasn’t just anyone, but Redskins football player Ryan Kerrigan. I was overcome with gratitude and excitement.
When I finally saw him again, about a year later, it was hard to put into words what he had given me. By then, the cuff on my leg meant so much more than any brace or ankle-foot support device.
It had become an extension of my body — a gift that had changed my life and allowed me the opportunity to continue helping others.
From the day I first received the Bioness L300Go, or “my little computer” as I call it, I started to feel stronger and more confident. I also regained sense of normalcy I didn’t even know I had lost. This was something no other medication or device had been able to give me.
Thanks to this device, I see myself as a regular person again. I’m not controlled by my disease. For years, movement and mobility were more work than reward.
Now, walking through life is no longer a physical and mental activity. I don’t need to tell myself “Lift your foot, take a step,” because my L300Go does that for me.
I never understood the importance of mobility until I started to lose it. Now, every step is a gift, and I am determined to keep moving forward.
Although my journey is far from over, what I have learned since being diagnosed is invaluable: You can overcome whatever life throws at you with family and a supportive community.
No matter how lonely you may feel, there are others there to lift you up and keep you moving forward. There are so many wonderful people in the world who want to help you along the way.
MS can feel lonely, but there’s so much support out there. For anyone reading this, whether you have MS or not, what I have learned from this disease is to never give up, because “mind strong is body strong” and “MS is BS.”
Alexis Franklin is a patient advocate from Arlington, VA who was diagnosed with MS at age 21. Since then, she and her family have helped raise thousands of dollars for MS research and she has traveled the greater-DC area speaking with other recently diagnosed young people about her experience with the disease. She is the loving mom of a chihuahua-mix, Minnie, and enjoys watching Redskins football, cooking, and crocheting in her free time.