Living Beyond the Diagnosis

It’s a question I get asked every day: “How are you?” or “How do you feel?” or “How’s everything going?” At first glance, these seem like innocent, everyday questions that most people answer with ease. But for me, they’re not so simple. And to be honest, I struggle with them.
You see, I have Multiple System Atrophy (MSA). Every day feels like I’m walking closer and closer to the end. The motor skills, the balance, the dizziness, the fatigue — all of it is a reminder that my body is slowly betraying me. And yes, it scares me. It scares me a lot. But when someone asks me how I’m doing, what I really want to say is, “I’m dying. And it terrifies me.”

But I don’t say that.
Why? Because saying the real answer feels like it will create a distance between me and the people I care about most. It’s not that I want to hide my reality. It’s that I don’t want to burden my friends and family with the weight of it. I don’t want to upset them or make them uncomfortable. I know how painful it can be for them to think about my decline, and that thought—seeing their faces change when they hear the truth—keeps me from speaking it.

Sometimes, I wonder if saying the truth would scare them off.

I worry that the moment I say, “I’m dying,” they might think there’s nothing more to be said. That they might pull away or avoid me because they don’t know how to deal with the reality of what’s happening. And the last thing I want is for the people I care about to avoid me, to stop being there. To lose my connection to them.
The thing is, the best part of my day, the part that makes this whole fight worth it, is being with my friends and family. It’s the laughter at “Wednesdays with Lori” at Bingo, where the cards don’t matter as much as the jokes and the camaraderie. It’s Sunday game nights and dinners with the Nelsons, where we can forget about my illness for a few hours and just enjoy each other’s company. It’s the regular visits from loved ones that remind me that, even though my body is failing me, my spirit is still alive and kicking.

So when someone asks, “How are you?” what do I say?

I usually say, “I’m hanging in there,” or, “I’m doing alright.” And most of the time, that’s true. But it’s only part of the truth. The whole truth? Some days, I feel like I’m fading. And that scares me more than I can say. But I don’t want that fear to be the focus. I don’t want it to overshadow the moments I can still share with others. I don’t want to make people feel like they’re walking on eggshells around me.
I suppose that’s the delicate balance I try to maintain — between being honest about the struggles I face and protecting the relationships I hold dear. I don’t want my illness to define every interaction, but I also don’t want to pretend that it’s not there. It’s a fine line to walk.
At the end of the day, I want to keep living. Not just surviving, but living. And for me, that means staying connected to the people who matter. And even though it’s hard sometimes to keep up the facade of “I’m okay,” I do it because those moments with my family and friends — those shared experiences — are what give me strength.

So, if you ever ask me “How are you?” and I smile and say “I’m good,” just know that I mean it in the best way I can. And if you know the real answer, the one I don’t always share out loud, I hope you’ll understand why. It’s not that I don’t trust you with the truth. It’s just that I want to keep the love and laughter flowing between us, because that’s what helps me get through each day.

And at the end of the day, that’s what matters most to me.

~Coach~