Dear Recently Diagnosed Multiple Sclerosis Warrior,
I’m sorry to hear of your recent multiple sclerosis (MS) diagnosis. I wouldn’t wish this life on anyone, but I must reassure you, you’re not alone. And as simple as it sounds, everything will be OK.
I was diagnosed with MS seven years ago. One day, I woke up and couldn’t feel my legs or walk. I went to the emergency room, convincing myself it was an infection and some antibiotics would fix it. I’d be back to “me” in just a few days.
An MRI from that day showed multiple lesions on my brain, neck, and spine. I was diagnosed with MS that night.
I was given a round of high-dose steroids for five days and then discharged with orders to move back in with my parents to heal. I packed a bag and went from DC to Pittsburgh for a few weeks. I told my boss I’d be back and left a list of how-to’s with a co-worker.
I never returned. It sounds dramatic, but it’s the truth.
A few weeks after returning to my parents, I had another relapse that landed me in the hospital for the summer. I couldn’t talk due to dysarthria, I couldn’t walk, and I had severe dexterity issues. My body wasn’t responding to steroids or my disease management drug. We even tried plasmapheresis, a procedure that filters out harmful antibodies from the blood.
I spent eight weeks in inpatient rehab where I learned how to eat with weighted utensils, learned a new way of talking that didn’t sound like me, and relearned how to walk with arm crutches.
It was the most terrifying experience of my life. But looking back, that’s not all that I remember.
I also remember my family showing up every day. I remember my friends visiting with candy and love. I remember the therapy dogs, the nurses naming my room “the princess suite,” and my physical therapist who pushed me because he knew I could take it. I remember becoming a warrior.
MS is life-changing. If you’ve been diagnosed with MS, you have two choices: You can become victimized by it or you can become a warrior through it.
A warrior is a brave fighter. Living an adapted life in a world that isn’t that adaptive-friendly is brave. It’s brave to get up every day and fight against your own body with a condition that has no cure. You might not feel it now, but you’re a warrior.
Since that first summer, I’ve experienced a road of ups and downs. I’d go through many more life-altering symptoms. I spent a full year in a wheelchair before relearning to walk — again — with arm crutches. I’d compete in a marathon in a recumbent tricycle.
I’d keep on fighting. I’d keep on adapting. And I would keep on living limitlessly while limited.
Sometimes I don’t like sharing my journey to the newly diagnosed because I don’t want it to intimidate you. I don’t want you to be scared of the possibilities, the what-if’s, and the frustrations.
What I hope comes across instead is the theme of whatever happens, it’ll be OK. You may temporarily lose your ability to see, but your other senses will grow. You may experience mobility issues, but you’ll work with a physical therapist who’ll help determine if you need an aid and get you moving again. You may even have troubles with your bladder, but it makes for some funny stories after the fact.
You’re not alone. There’s a large community of other people with MS just like you. While every case of MS is different, we also get it because we have it. There’s a lot of comfort in that.
There’s also a lot of hope in the disease management therapies available. While MS has no cure, there are drugs to help slow progression. You may have just started one or you may be chatting with your neurologist still about which one is best. Hopefully you’re able to find one that helps.
Whatever you’re feeling right now, feel it. Take your time to adjust. There’s no right way to tackle this disease. You just have to find what works for you and your journey.
You will be OK.
You’re a warrior, remember?
Eliz Martin is a chronic disease and disability advocate who shares her life of living positively with multiple sclerosis. Her favorite way of advocating is sharing how to live limitlessly while limited, often through the use of mobility and adaptive aids. You can find her on Instagram @thesparkledlife, with content that is a mix of sass, sparkle, and a side of topics that go beyond the casual.