A Letter To Everyone With AS

It's okay if you can't clean the house.

It's okay if you can't go to dinner with your friends.

It's okay if you're not who you used to be.

If you can't launch that website, host a big dinner for your friends' engagement, or get all the kids over for a slumber party.

It's okay if you're not the sexy version of yourself, or if you want to wear PJs and go to bed early. It's okay if all you do is stretch, nap, and repeat.

It's okay if you can't shower today.

It's okay if you feel angry or jealous or resentful.

If you can't write that blog post. If you can't respond to that ever-growing group chat. Seriously, your brain is tired.

It's okay if what once inspired you, pushed you, motivated you, or validated you is changing.

It's okay if your body is different now.

It's okay if you can't drink wine and stay up late dancing these days.

It's okay if you tell your friend you need to reschedule.

It's okay if you can't rearrange your shelves and finally get your living room looking cute. The living room can wait.

And it's also okay if the disease has made you better, made you more aware, made you feel more empathy, and more gratitude. It's okay if it took a disease to change your life. It's okay if you feel more present.

The thing is, all of this is okay

It may hurt for it to be okay — and you may need to move through a process of grief ("but I want to be that old self") and denial ("seriously, how is this the new me?") and acceptance ("fine; I can't party as hard, even if I want to"). And then back again.

It may hurt to acknowledge the changes in your body, mindset, lifestyle, and relationships — but these changes are necessary. To resist them is to suffer.

It may even feel relieving to get the diagnosis, to have a name for the demon. It may feel good to know you can take action in the ways that work for you.

It may feel weird to not be sad. That's okay too.

My suggestions

Accommodate your body.

You don't need to bury your old life or say goodbye to everything, but you probably need to modulate, balance, and recalibrate your behaviors and abilities. Ask for help. Find a setup that works for you. Reshuffle your schedule to leave a little extra room or time for what you need. Rest. Pause. Drink water. Stand in the sunlight.

Accommodate your darkness.

Leave room for feeling sad and resentful and exhausted — and lean into the suffering. Don't avoid crying. Don't avoid the dark. Don't deny the feelings; they'll only grow stronger. Your shadow is there to help you grow and learn, to help you discover yourself and your resilience and your limits. To help you transform. Feel the anger. Transmute it into art or poetry or a hobby. And know when to close Pandora's box of suffering and embrace the light.

Accommodate your spirit.

Find a way to seek joy in what remains. Can you journal about your joy? Can you find a dance class that isn't as high-impact? Can you find a way to let the light in just a bit? Can you find a way to let the new you be just as good, just as beautiful, just as enough?