Living Beyond the Diagnosis

I often find myself wrestling with a question that seems to linger on the edge of my mind, sometimes coming in the quiet hours of the night or in a rare moment of clarity during the day: When is the right time to say, “This might be the last time we see each other?”
I have multiple system atrophy (MSA), and with every passing day, the progression of this disease leaves me with fewer and fewer good days, fewer and fewer opportunities to connect. It’s a strange thing to realize that life, for me, is now measured in moments of quality rather than a limitless stretch of time. It’s hard not to think ahead to that inevitable moment when a goodbye won’t just be a temporary farewell, but a final one.
But that’s the dilemma, isn’t it? How do I say goodbye? And when?
It’s not something I want to say lightly, nor is it something I want to say in a way that feels like a burden to others. I don’t want to bring sadness or discomfort. I’ve seen how my diagnosis has affected those I love, and I don’t want to make it harder for them. I’ve watched their faces falter, their eyes struggle not to tear up, as I talk about my disease. It feels wrong to add weight to an already heavy heart by saying out loud, “This might be the last time I see you.”

I guess part of me doesn’t want to upset anyone. There’s a part of me that knows they’re already grieving, even though I’m still here. But I also know that in this delicate balance of life and death, in the spaces where MSA silently progresses, there is one thing I can still do—say what I need to say, even if it makes me and others uncomfortable.
The thought of not being able to tell people how much they mean to me, how grateful I am for their love and support, scares me more than the idea of dying itself. There’s something incredibly powerful about being able to look someone in the eyes and say, “You’ve made a difference in my life.” There’s a deep need in me to share those words before it’s too late.
But here’s the thing: the moment I say it, things shift. It becomes real. The weight of it all hits us/me, my family, my friends—and in their discomfort, I can almost feel the walls go up. They don’t know how to handle the knowledge that I might not be here much longer. They don’t know how to look at me and not see someone who’s “sick,” but someone who’s dying.

So, I hesitate. I wonder if it’s better to avoid the conversation altogether, to keep a brave face, and to act like nothing’s changing. But deep down, I know that’s not what I want. Not anymore.
I think the problem is that we, as a society, we don’t really know how to deal with death. We shy away from it, ignore it, pretend it’s not there until it’s unavoidable. It makes people uncomfortable, it makes me uncomfortable, but it’s there. It’s inevitable. And we need to learn to face it.

In my case, I don’t have the luxury of time to let these conversations happen naturally. The truth is, each time I see someone, it could be the last. I know that, and I feel that in my bones, but they don’t always see it. So I find myself not saying what I need to say, not sharing the words that would let them know how deeply they’ve impacted my life, because I don’t want to be the one who makes them feel the weight of it.
It’s a strange dance, this balancing act between wanting to say goodbye and fearing the reaction it might provoke. But what I’ve come to realize is that I need to say it. Not for me, but for them. If I truly love these people, if I want them to know how much their support has meant, then I have to speak those words. Yes, it will make them uncomfortable. Yes, it will make me uncomfortable too. But that’s part of life—part of being real with each other.

I can’t avoid the truth. I don’t want to leave this world with words left unsaid. I don’t want to leave without telling them how much they’ve helped me fight, how much they’ve loved me through this. I don’t want to keep pretending that everything is okay when it’s not.
And maybe that’s the answer to my question—there is no perfect time to say goodbye. It’s something you have to do when you feel it in your heart, no matter how awkward, no matter how painful. Maybe the right time is now, maybe it’s tomorrow, or next month—but I do know that I don’t want to wait too long.

To my friends, my family, and to anyone reading this, know that you’ve made a difference. Even if this is the last time we actually do see each other, I want you to know that I’ve never taken you for granted. I want to tell you that you’ve shaped my life in ways that words can’t fully express. I want you to know that, because of you, I’ve lived a fuller life, even in the face of this disease.
And if this is the last time I see you—thank you. Thank you for every laugh, every hug, every moment of kindness. You’ve meant more to me than you’ll ever know.

~Coach~