One of the most powerful metaphors I remember learning about living with Multiple Sclerosis involved a car.
When you are first diagnosed, MS is driving.
It has its hands on the steering wheel, decides how fast you go, and seems to determine where you are headed. Your plans suddenly belong to the disease. You spend your days learning its rules, watching for the next symptom, and wondering what it will take from you next.
I was diagnosed with MS in 1997, just eight days after my 23rd birthday.
For the first five years, MS absolutely was driving my car.
But I remembered learning that the goal was to move MS out of the driver’s seat. By the time time Dan and I were married in 2005, MS was riding shotgun.
It was still there. I mean, I couldn’t pretend otherwise, but I wanted to be the one making the decisions.
And now, some 29 years later?
I have pretty much put MS in the trunk.
Do not get me wrong. MS hasn’t disappeared. After nearly three decades of living with this disease, I know better than to believe it ever will.
MS has changed my life in ways I never would have chosen. I rely on a wheelchair, and I have limitations that certainly were not part of my plan.
But MS doesn’t get to decide everything.
I still make plans. I still laugh. I still go to concerts, spend time with family and friends. I also write, advocate, travel when I can, and find reasons to look forward to tomorrow.
Sometimes I even forget that MS is in the car.
That might be one of the greatest gifts of living with a chronic disease for so long: not forgetting that it exists, but refusing to let its existence become my whole story.
My MS is relatively stable right now, and I am grateful for that.
Except now there is another person in the car.
Dan has MS, too.
And that changes the metaphor for me.
I can celebrate the fact that my MS is riding quietly in the trunk while still worrying about what is happening in Dan’s car.
That is one of the complicated parts of loving someone who also has MS. I have learned how to live with the uncertainty of my own disease. It is harder to make peace with the uncertainty of his.
I know what this disease can do because I have lived it. I know how quickly a diagnosis can become a life divided into “before” and “after.”
So I worry about him.
I worry because I love him. I worry because I know MS, and I worry because neither of us gets to choose which direction this disease takes.
But worry does not get to drive, either.
Maybe that is another lesson MS has taught me. Putting my own MS in the trunk doesn’t mean I have stopped caring about where the disease might take us. It means I am trying not to give fear the keys.
We have spent more than two decades learning how to live with MS without letting MS become the definition of our lives.
Sometimes this means adapting. Sometimes it means grieving what we have lost. Sometimes it means asking for help. Sometimes it simply means getting in the car, turning up the music (cue Springsteen, Train, and O.A.R.), and going somewhere anyway.
MS is still along for the ride. It probably always will be.
After all these years, I think we have learned something important: MS may be part of our journey, but it doesn’t get to choose our destination.