Two years ago I made a decision.
I signed the paperwork. Rolled up my sleeve. Sat in a chair and became part of something bigger than myself.
I joined a clinical trial for a drug called Frexalimab.
Every month I make the trip for my infusion. Every month I sit there for about an hour while the medication, or maybe the placebo, makes its way into my body. Then I wait another hour while the staff monitors me before I head home.
That’s it.
No more eight-hour day.
No Benadryl knocking me unconscious.
No steroids making me feel like I drank twenty cups of coffee.
Anyone who has ever received Ocrevus knows it isn’t just a Drug Modified Therapy infusion day. It’s an event. You block off your day. You prepare yourself mentally. You recover afterward.
Frexalimab has been different.
Simple.
Quiet.
Almost… normal.
The strange part is I have no idea what is actually dripping into my veins. That’s how clinical trials work. I might be getting the medication. I might be getting a placebo.
Nobody tells me.
Some days I try to convince myself I know the answer. My latest MRIs showed no new lesions in my brain or spinal cord.
Maybe that’s the drug slowing the diseasedown.
Maybe it isn’t.
Maybe I’d have looked the same either way. Nobody knows Including me.
I’ve learned to be comfortable living with uncertainty. MS doesn’t leave you much choice. People ask if I think it’s working. I honestly don’t know. I still wake up with sore legs.
My balance still reminds me who’s in charge. Fatigue still shows up uninvited. Heat still turns my nervous system into a protest.
Progressive MS doesn’t hand out many easy victories. But there have been no new lesions. I am far from being cured. But I’ll take that.
Hope doesn’t always look like getting your old life back. Sometimes hope looks like not losing more of yourself.
I still dream, though.
I dream about waking up one morning with half of my old body back. Not all of it. I don’t need perfection. Give me fifty percent.
Give me enough strength to walk farther.
Enough energy to stay out with my family without calculating every step. Enough balance to stop wondering if today is the day I hit the floor again.
Fifty percent would feel like winning the lotteryi imagine.
People ask me if I believe they’ll find a cure. My answer changes depending on the day. Some days I think I’ll die with MS.
That isn’t pessimism.
It’s realism.
This disease has no finish line. It simply asks you the same question every morning.
“What are you going to do today?”
Other days I look at how far we’ve come along with medicine. Twenty years ago many of today’s treatments didn’t exist.
Today researchers are targeting inflammation differently. They’re studying the brain itself. They’re trying to repair damaged myelin instead of only slowing the damage. In some trials they are trying to do both. This gives me something I didn’t have when this journey began.
Possibility.
I’m not sitting around waiting for science to rescue me. I’m done living like the next breakthrough is going to show up next Tuesday.
If a better treatment comes, I’ll gladly take it.
If a cure comes during my lifetime, you’ll hear me celebrating from another zip code. Until then, I have work to do.
I need to get stronger.
I need to eat better.
I need to move my body even when it argues with me.
I need to protect my peace.
I need to laugh more.
Love harder.
Keep writing.
Keep showing up.
Because surviving MS isn’t only about what happens inside a laboratory. It’s about what happens between one sunrise and the next.
So every month I’ll keep showing up for my infusion.
Maybe it’s Frexalimab.
Maybe it isn’t.
Either way, I know this.
Hope isn’t something they’re infusing into my arm.
Hope is the decision I make before I ever sit in that chair
Me Myself, and MS 