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Posted by: The Sumaira Foundation in NMO, Patient, Voices of NMO
Hello. Hola. My name is Marie and I am proud to be the Welcome Manager for The Sumaira Foundation.
I was diagnosed with NMO in 2007 when I was only 14 years old. I shared the story of my diagnosis a few years ago, but as I learned, life doesn’t stop with NMO.
In 2019, I joined The Sumaira Foundation as one of the first patient TSF Ambassadors representing the state of New Mexico.
Living with NMO can be lonely at times, but the Foundation opened up an entire new world to and for me. All of a sudden, I felt I truly wasn’t alone. I quickly became part of a community of patients, caregivers, doctors and advocates who were all fighting these diseases with great passion and strength.
It brought me new sense of hope and sparked something in me. Putting myself out there could matter. I could make a difference. By being an advocate for NMO, I could show patients that life doesn’t stop with a diagnosis because there is so much more to life and we can do anything we put our minds to.
When I applied to The Sumaira Foundation’s Ambassador program, I knew it was something I wanted to do. But I didn’t know if I could do it. Could I be an ambassador? Am I going to be good at it? I was nervous because I didn’t know.
I was so proud to become an Ambassador. It helped me want to be better for myself, my family, and other people with NMO. I wanted to set an example and knew it would be hard work. I would have to get stronger to get what I wanted…
I had been in physical therapy for years and knew it was going to be more important than ever. Since I had gotten sick, my family relied on sideboards to help move me from my bed to the wheelchair or a lift to move me around the house. The therapy was working, I could stand, but I was so wobbly, and falling was a huge risk. Then the pandemic hit.
Like everyone else, it was hard. I had to make a choice though. It would have been easy to let the pandemic stand in my way, but I couldn’t just let my progress slip away. I could not let this hold me back. I decided to find new ways to challenge myself every day. Something within me told me, “don’t use the Hoyer lift.” I knew it would be hard, but I so badly wanted to walk again. I just said to myself, “I want to walk so this is what I have to do.”
I also knew that I needed to lose weight. This was the right time to concentrate on my body and pay attention to what I was eating. I started by cutting back on sugar and looking at what I consumed. Within a month of changing how I was eating and walking to my wheelchair every day, I started to notice I was losing weight and getting stronger.
Of course, some days were tough but I couldn’t let the times when I was tired stand in my way. I got into a daily routine which helped me get through the difficult days without thinking too much about it. I knew what I needed to do so I just did it. There were also times when I had my doubts, but my family and Sumaira kept telling me, “You got this!”
With their encouragement, I started adding more challenging exercises. I was able to get a recumbent stationary bicycle that I began to ride each morning. This helped me keep moving forward as the weight came off, my legs and lungs got stronger and stronger.
I was finally able to return to physical therapy. After talking with them about my goals, they designed a program to keep challenging me. While I was seeing changes in my body, my mind was also getting stronger. I found that even though I would be in pain from all the work, I could work through it and I was happier than ever with myself!
I finally saw my neurologist, Dr. Enrique Alvarez, in person for the first time in two years, and he was amazed at my transformation. He said, “I don’t know what you’re doing, Marie but whatever you’re doing, keep it up.”
Even though the world was opening up again, I understood that I had to stay disciplined and maintain the lifestyle changes I had implemented during the pandemic. I couldn’t let myself get distracted. I had to be mindful of my eating and stay on track with my exercise.
I had made so much progress that I was able to fulfill a wish I made on my 30th birthday. I found a place in Albuquerque that specializes in therapeutic horseback riding. I was able to take horseback riding lessons and I loved it! Being on a horse made me realize that I could do so many things I didn’t think I would ever be able to do again.
Losing all the weight has been great but it did create some new problems. As my body changed, I didn’t fit in my chair anymore and I started to get sores from the new pressure points. I had used a heavy-duty chair for so long that it was part of me, and thinking of changing was scary.
When they brought my new chair, I got in it and I literally felt like Cinderella; it fit just right. And I smiled.
I mostly use my wheelchair when I go out because I can’t walk long distances, but I have faith and hope that one day, I won’t need it at all.
Sometimes, the lifestyle changes were frustrating, but it has helped me in so many ways. Besides my strength and endurance, it has also helped me manage my diabetes to the point that I don’t have to take medicine anymore. It has also helped me learn to listen to my body more carefully and know when I need to recharge so I can work towards the next challenge.
In 2022, I was asked to be the patient speaker at TSF’s 5th Annual Gala in Boston. Being asked to be a speaker at the gala was amazing. It was like something from a dream. I never imagined I could do something like that.
The day of the gala came and I was so excited. I made an appointment at a salon so I could get my nails done, but when we got there, we found the building was not accessible. After everything NMO threw at me, all the hard work I did to get stronger, and all the miles I traveled from New Mexico to Boston for that night, I wasn’t about to let 20 stairs stand in the way of getting my nails done and feeling beautiful! It took me a little bit, but I managed to get up those stairs!
It was emotional to finally meet other NMO patients and caregivers in person. We had built friendships over the years online but getting to hug each other showed we were family. That evening, I spoke to a packed banquet hall filled with doctors, researchers, donors, strangers, healthcare professionals and people who came together from all over the world to support NMO. It was a magical night.
This is not to say it has been easy. When people ask how I did it, I tell them, “Hard work is what worked for me.” I think I get that mindset and strength from my family. When I first got sick, they had to overcome barriers and biases in a healthcare system that barely knew what NMO was. They listened to doctors tell them their little girl may not survive. If that is not the definition of strength, I don’t know what is. They deserved that evening at the gala as much as anyone.
My experiences living with NMO are why I take my role as a TSF Ambassador and the Welcome Manager seriously. People with NMO and MOG face so many challenges. Anything I can do to bring a little light to their life and help them find the support they need shows them our disease is not the end.
