Warriors come in all shapes and sizes. They walk among us, often unseen and battling invisible demons. But one thing remains constant — warriors never quit. They adapt and fight the good fight.
I was diagnosed with multiple sclerosis over five years ago, officially turning my life upside down. My identity and sense of self were stripped away, replaced by something foreign and alien. I went completely blind in my left eye in less than a week — pitch black‚ an empty void. Shortly thereafter the pain and muscle spasms started. I lost control of my limbs. They either moved on their own, uncontrollably, or not at all. I screamed on the inside, willing my arms or legs to move, only for them to remain motionless — paralyzed. Imaginary bugs crawled beneath my skin; phantom knives gouged my body repeatedly and without warning.
These symptoms and more come and go, making it hard to plan for the future or confidently leave my home. It wasn’t until 2020, when my older sister was also diagnosed with MS, that I knew I had to speak out, speak up, and advocate for all of us.
Multiple sclerosis is an autoimmune disease that affects the central nervous system — the brain and spinal cord. Our immune systems attack the nerves and cause irreparable damage known as lesions, resulting in symptoms like the ones I’ve described. Every person living with MS has their own list of symptoms based on where their lesions are located. This only makes diagnosing MS that much harder, since symptoms can manifest from all over the body and from anything that our nervous systems regulate, which is … everything.
Often, MS goes undiagnosed for years because of this. My symptoms began as a teenager, but I wasn’t diagnosed until age 35. Each relapse and worsening of symptoms was underdiagnosed — passed off as stress, poor diet, or a weird fluke. The symptoms were treated without trying to understand why. It took going blind in one eye for further testing to be done. And even then, only because the doctor’s mother also lives with MS did he recognize the underlying cause, decades after it all began, because of his direct connection with MS.
That is why March — MS Awareness Month — is so important. Over a million people in the United States live with MS, many here in the Orlando area. Odds are you know someone that lives with MS. They just might not talk openly about it like I do. But awareness is growing, both nationally and globally. New therapies and medications are slowing the growth of lesions, allowing for prolonged quality of life. Activists like me are connecting with our communities, politicians, and the healthcare industry to bring about positive changes and further gains in our cause: a world without MS. A world where MS is prevented before it starts. A world where those that live with MS are supported and given every opportunity to live a full and fulfilling life.
I have since regained some vision in my eye, but I dread the next morning that I wake up and it once again is pitch-black. I wake every morning and triage my body from head to toe. Is anything numb? Can I move my fingers and toes? Can I see? What’s my pain scale? Can I talk? How difficult is it to think? Will I make it to the bathroom in time? Can I leave the house today? How hot is it outside?
So many “little things” that I once took for granted that now dominate my daily life. But they make me grateful for the moments when my symptoms are quiet. Those are the moments to celebrate while the others are simply to survive. We are MS Warriors, fighting the good fight, day in and day out.
If you or someone you know lives with Multiple Sclerosis, know that your community is behind you and supports you. There are ways to get involved and ways to seek out help. We have various events and opportunities throughout the month of March where you can interact with others in our area and learn more, whether it’s Bike MS, Walk MS, joining our Orlando Community Council, or becoming an activist like me. Every little act makes a difference for those of us living with this invisible and incurable disease. For more information on these events or to learn more about our local MS community, visit the National MS Society’s website. There you can learn more about the disease, find doctors in your area that have experience with MS, or simply get involved. MS is a part of me, but not all of me. I am more than my diagnosis. I’m the MS Warrior Princess, out here living my best life and fighting the good fight for all of us.
Therese “Tess” O’Hara lives in Ocoee. She is a member of the Orlando Community Council and a District Activist Leader for the National MS Society.