The MS Chronicles: A Letter to My Pre-Diagnosis Self

Dear 25 year old Heidi,

Welcome to what will be the greatest and hardest year of your life.  You’ve just lost your grandmother and your dad’s death followed a week later.  I know you’re taking life one step at a time but yet still feeling like you’re barely making it.  On top of that, you’re dating this great guy but not sure how all that’s going to work out if your brand new neurologist doesn’t figure out what’s wrong with your brain.

Hiking at a state park in Georgia. I’m still not sure how I walked all those steps but I did!

I know it all started years ago with trouble walking.  This mysterious set of symptoms have come and gone for years but now they’re coming but not going.  You’ve finally found a neurologist who seems like he’s not going to give up on you and you’re hopeful that maybe this is the one.  The doctor who won’t think you’re crazy but that there’s actually something causing your numbness, pain, and trouble walking.

And he will.  He will figure it out.  He’ll do  MRI’s and spinal taps and he’ll come back with those two words you’ve heard for years- multiple sclerosis.  Your diagnosis will come six weeks after your wedding.  You and the new husband will learn all about auto injectors, disease modifying drugs, and the awful noise that the Rebif injector makes when you use it.  It won’t be easy.  But it won’t be the death sentence you imagined.

You’ll keep walking.  And falling. Even once you’ll fall head first into a clothes hamper.  But you’ll keep getting up.

Eventually, you’ll get through two pregnancies and while you’re busy growing those babies, the FDA will approve the first oral medications to treat multiple sclerosis.  The day you take that first pill instead of an injection, you’ll feel like you’ve won the MS lottery.

My first Walk MS event

Bad days will still come and they’ll be times where you’ll feel like they’re all bad days and no good ones.  You’ll battle fatigue, memory issues, and the intense South Carolina heat in August.

But you’ll keep putting one foot in front of the other.  And remembering that God’s grace is sufficient. Just like it was yesterday, it will be enough for tomorrow.

Wedding photo cred:  Jacob Dean Photography