Let’s get something straight. MS has taken plenty from me. I’m not about to put a pretty bow on that.
I was 23, teaching high school PE, coaching and loving the life I’d worked so hard to build. Then came double vision and a diagnosis I most definitely did not order.
People sometimes ask what MS has given me. Interesting question. But I think it gives MS far too much credit.
I stopped trusting the body I’d always trusted
As an athlete, I believed in practice, effort and determination. If something was difficult, I worked harder. That approach made sense in the gym. It was considerably less reliable when MS entered the picture.
Fatigue, balance problems and other symptoms meant I couldn’t assume my body would cooperate simply because I had plans. Some days I could look perfectly fine and still have a private argument going on with my nervous system.
I didn’t appreciate that change. I still don’t always appreciate it. There are things I would happily do without calculating energy, heat or whether my balance is going to have an opinion.
But the loss wasn’t only physical. It was the loss of certainty. And I had to figure out how to live without the guarantees I thought I had.
I lost a career I absolutely loved
The gym was my world. Teaching, coaching and encouraging students weren’t just things I did for a paycheque. They were part of how I understood myself.
When I couldn’t continue teaching physical education, I moved into teaching social studies. A different classroom didn’t magically solve what had happened to my identity. I was still looking for the PE teacher I’d been.
For years I measured myself against her. What a miserable competition to enter when your opponent is a version of yourself who no longer exists.
Eventually, I pursued other forms of education, earned my PhD and found different ways to teach, speak, write and contribute. None of that makes losing PE a wonderful thing. I still loved that career. But losing one role didn’t mean I had nothing left to offer.
I lost some spontaneity. And I was annoyed about it.
Remember deciding to go somewhere and simply GOING? No negotiations about energy. No questions about stairs or heat. No wondering whether enjoying yourself today will cost you tomorrow.
MS made me think about things I used to take for granted. Sometimes I adapt a plan. Sometimes I say no. Sometimes I go ahead and hope for the best. And sometimes I’m disappointed.
I don’t need to make every cancelled plan into a lesson in resilience. Sometimes it’s just disappointing. That’s allowed.
I had to rethink independence
I once believed independence meant doing everything myself. Very athletic. Very determined. Occasionally very ridiculous.
If I needed help, I worried that I was losing another piece of Patti. Eventually, I began asking myself why accepting assistance should erase my ability to make decisions.
These days, independence means having choices. I can ask for help. I can decline it. I can change my mind. The important part is that I’m still the one making the decision.
What I built belongs to me
Here’s where I disagree with the idea that MS gave me a stronger voice, greater empathy or a new purpose. MS created circumstances I didn’t choose. I did the work of deciding what came next.
I spent years looking for the old Patti. I grieved her. I got angry. I made decisions, changed direction, made mistakes and tried again. Along the way, I found my voice and discovered new ways to contribute. I also became more aware of how little we know about the people standing in front of us.
Did MS make that happen? MS was part of the circumstances. But I’m not giving it the award for everything I’ve accomplished since.
Before MS, I was a good person. Today, I believe I’m a GREAT person. I love who I am, and I worked hard to get here.
Would I call MS a gift?
NOPE.
There are experiences and abilities I miss. There are days when MS is a complete pain in the backside. And there are parts of the life I created afterward that I genuinely love.
All of that can be true at once. I don’t have to be grateful for the diagnosis to appreciate the woman I’ve become.
So perhaps the question isn’t, “What did MS give you?” Perhaps it’s, “What did you decide to build after life changed?”
I can’t answer that question for anyone else. I can only tell you what happened to me.
I stopped waiting for the old Patti to return. I started creating someone new. And when I look in the mirror now, I know who I’m looking at.
MS does not define ME. I do.
