MULTIPLE SCLEROSIS- MY STORY
I used to think strength came from those who fought every day; for themselves, for others, for what they believe in. While I never outright associated weaknesses as being a weak person, there are some days where I want to be weak because I don't have the stamina or fight to be a hero. When I'm tired on a physical and mental level, there's nothing I want to do more, than give in to what is taking so much of a toll on my health.
I was diagnosed with an aggressive form of Multiple Sclerosis at the age of 17 after getting bad news after a blood result, a spinal tap and over 600 lesions showing in my brain and spine after an MRI. Before being diagnosed I had struggled with fatigue, clumsiness, blackouts, tingling and numbness. Shortly after being diagnosed, I had to begin steroid infusions and I eventually started my twice a year treatment that is a form of chemo.
Multiple Sclerosis forced me to “retire” from my favorite hobby because I could no longer feel my legs when landing jumps and only had the stamina for one hour a week. Within what felt like a couple months I went from being a contortionist and competitive figure skater to needing to be carried upstairs because I couldn’t walk and having my hair fall out in clumps.
While I should be used to my infusions by now, given that I've had close to a dozen since being a teenager, I always get anxiety. "What if I start having seizures again during my treatment?" "What if I vomit so much blood I have to go to the ER?" "What if this is the visit that the medication stops working and we go back to square one?" "What if I experience so much pain that I start to mentally lose my sanity?'
There are some things you do in life that after the initial fear you eventually get over it, riding a bike without training wheels, driving a car, or even trying a jump for the first time while figure skating. Then there are other things that no matter how many times you do them, will always be terrifying. Willingly allowing medication to kill parts of my body knowing the side effects barely outweigh the cons of not doing anything, is one of those things that will always be scary. Accepting that most things in life are temporary and the future of living with Multiple Sclerosis is unknown, is scary.
Having a disease with no cure has often left me feeling stuck in a place that I can’t escape. I can leave temporarily for a trip to a better place, but I’ll always come back home to the acceptance that there’s no such thing as getting better with MS, only getting worse.
My infusions aren’t pointless because I haven’t had new lesions, but with the brain damage that I already have I can’t reverse the damage. And saying there’s no cure or no true way to “get better” is far from encouraging.
MS felt like it took a part of my identity and made me a ghost of who I once was, I felt like crying or screaming or just sinking away and drowning myself in the “what ifs” that come with an incurable disease. Some days all I think about is how Multiple Sclerosis made me weaker and some days I am reminded how much stronger my character and drive is because of it.
Photographer: Violet Rankin
IG: violetjillanephotoart
Female Model/Photographer: Jayde Rankin
IG: jaydeonfilm
Retoucher: JDR
IG: sk8rjayde