Welcome to the club you never asked to join.

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Dear Friend,

You didn’t ask for this. None of us did. But here you are—with a diagnosis that changes everything and nothing at once. And you told me. That matters more than I can say. I know how hard that moment can be—the words sticking in your throat, the fear of how it might land. Thank you for trusting me with it. That takes real courage.

So now that it’s out there, I want to offer you something—not a pep talk, not a to-do list, but a sort of welcome letter. Not to the disease itself, but to the community, the strange club of people who live with it, talk about it, carry it, and still laugh and live and reach for joy anyway.

You will feel fear.
Sometimes sharp, sometimes slow-burning. It might hit you in the middle of the night or in the middle of a sandwich. That’s normal. Don’t be afraid of being afraid. And when the fear feels like too much, call someone who gets it. I’m one of those people now.

You will feel relief.
Odd, I know. But after the swirl of symptoms and suspicions, finally having a name can feel like clarity. It’s not the answer you wanted, but it’s an answer. And from here, you can begin to navigate—not alone, not blindfolded, but with people, tools, and time.

You will Google too much.
Oh yes, you will. At 2 a.m. You’ll go down rabbit holes with words like “progression,” “stages,” and “miracle cure.” Some of it will scare the hell out of you. Some of it will be helpful. You’ll get better at sorting one from the other. Eventually, you’ll learn when it’s time to close the laptop and just go sit in the sun.

You will do your research.
And you’ll become fluent in acronyms: DBS, MDS, UPDRS. You’ll weigh medications like a chemist. You’ll test out exercises, routines, diets. Some things will help, some won’t. Your body will become your lab, your teacher, your unpredictable companion. But you’ll figure out what works for you. And I’ll be here to share what’s worked for me, when you’re ready.

You will laugh at things that aren’t funny.
Like your hand deciding it’s had enough of holding a spoon. Or trying to sign your name and watching it turn into modern art. And sometimes you’ll cry, too—hard and unexpectedly. You might find yourself blurting things out, swearing at inanimate objects, or losing it over a commercial about dog food. It’s okay. Humor doesn’t fix everything, but it sure makes the load a little lighter. And tears? They’re just part of this strange new fluency in feeling.

You will need people.
Even if you’re used to being the strong one. Especially then. You’ll need listeners, co-conspirators, folks who won’t flinch when you talk about the hard stuff. Some people will surprise you by showing up. Some might disappear. But you’ll find your circle. And I’m in it.

You will grieve.
Not just once, and not always in big dramatic ways. Sometimes it’ll sneak up on you—while folding laundry, or walking past a photo, or realizing your handwriting isn’t what it used to be. You’re allowed to mourn the shifts, the losses, the uncertainties. Give yourself that space. You’re still you. That doesn’t change.

You will share your story.
At first maybe just a piece of it, here and there. Then more. And when you do, you’ll find connection. Real connection—the kind that cuts through small talk and lands right in the heart. When you’re ready, your story will make someone else feel seen. It already made me feel less alone.

You will hit a wall sometimes—and not be able to explain it.
You’ll know how to do something—you’ve done it a thousand times—but in the moment, it’s like the connection between knowing and doing just… slips. Writing an email, making a call, tying a shoe. It’s not laziness. It’s not apathy. It’s something harder to name—a disconnection between intent and action. And sometimes, it comes with other shifts too: the filters you used to rely on—emotional, social, verbal—may wear thin. You might cry more easily, laugh too loud at the wrong moment, or start swearing like a sailor in line at the pharmacy. You’re not broken. You’re just a little… unfiltered. When it happens, I hope you remember this: you are not alone. Many of us know that invisible wall. And we stand in deep solidarity with you.

You will change.
This part might scare you—but I promise, not all change is loss. You’ll shift in ways that reveal strength you didn’t know you had. You may also find yourself with fewer buffers—laughing too loudly, crying in the cereal aisle, cursing with gusto at your own shoelaces. You’ll feel more raw sometimes, more open. It can be disorienting… and oddly liberating. You’ll find new language for yourself. And some days, you’ll surprise even you.

You will not be alone.
That’s the thread I want you to carry through all of this. You are not alone. I’m here. Others are, too. People who live this life with humor and heartbreak, frustration and grace. People who will sit beside you in the dark and walk with you toward the light.

With deep respect, fierce tenderness, and an open hand,
Your fellow traveler

P.S. — Some things that helped me, in case they help you too:

These are just starting points. Take what serves you, leave the rest.

One response to “Welcome to the club you never asked to join.”

  1. karencomom Avatar
    karencomom

    Thank you for your wise wise wise words fellow traveler. I’m so glad we share the same circle. This is as awesomely worded as it is timed.

    Somewhat…unfiltered. Or somewhat…off. Whichever you call it I resemble that remark. Owning it with laughter helps.

    Tears bursting forth without notice. It happens. Then when I think they should. It doesn’t. The mind is a terrible thing to shrink.

    I’m so glad you included so many great links to some of the leading organizations and many of our dear friends. Our voices are stronger together. Yes, and all our stories. The large and the small. Have the power to make a difference.

    Like

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