Being Positioned

Chronic illness doesn’t just change your body. It can change how you see yourself.
For many women with NF2 or VHL, that includes real, visible changes: Facial paralysis, hearing loss, mobility changes. It’s a loss that’s easy to overlook, but it’s real grief: grieving the identity of who you were.
That’s part of why our retreat ends the way it does, with a sunset photo shoot. We take portraits of each woman there, not to erase what’s changed, but to celebrate who she still is, exactly as she is now. It becomes this beautiful celebration, and for a lot of women, it’s the start of learning to love themselves again.

If this loss of self is something you’ve been carrying, we’d love to meet you at our October retreat, open to women with NF1, NF2, Scwannomatosis and VHL. October 1st–4th. Apply at beingpositioned.org.

What you eat can help your body heal, even when medicine can’t do it alone.

That’s something Christina, our founder, learned the hard way. After her diagnosis, one of the first things a doctor told her was that food wouldn’t shrink her tumors, so she took that as permission to eat whatever she wanted. But healing isn’t just about the tumors, it’s about giving your body what it needs to get through chemo, chronic stress, and everything else that comes with it.

That’s part of why nutrition is built into our retreats. We bring in a private chef who makes intentional, doable meals, whole foods, protein, veggies, and carbs and we send you home with the recipes and the why behind them, including how to support healthy blood sugar regulation.

If you’ve ever been told food doesn’t matter and want to know what actually helps, this retreat might be for you. October 1st–4th. Apply at beingpositioned.org.

*Not medical advice

Can we talk about sleep for a sec?

It’s the #1 thing we hear from people living with chronic illness, sleep is just... hard.
And honestly, it makes sense. When you’re carrying pain, worry, medications, and a body that doesn’t always cooperate, your circadian rhythm takes the hit too.

At our retreat, this is something we actually address. One of our favorite things we do together? Watching the sunrise on the beach, sounds simple, but it’s part of resetting your body’s rhythm in a way that actually helps, even after you’re back home dealing with everything else.

If a retreat like this sounds like something you need — apply at beingpositioned.org. 🌅

Our founder Christina gets real in this one.

A doctor once told her that having NF2 was like grenades, always waiting to go off and that language built a whole narrative in her head of “brace yourself, the next disaster is coming.”

Then she got curious, what if she started saying good things instead? actual positive, healthy things about her situation.

Her ask for you: go question the narrative someone else handed you and see what actually changes when you do.

Our founder Christina shared this little ritual she does after every single doctor’s appointment, MRI, infusion, literally any of it.

She goes home, and before anything else, makes herself go back outside for at least 10 minutes, no phone.

Feet in the grass if she can, just a couple minutes to breathe and let her body reset from the fluorescent lights, the stress, all the toxic-clean-smelling everything.

It sounds small but it genuinely helps.

It’s one of the things we love teaching (and actually living out) with the women at our Fall Retreat — October 1st–4th, out on the most beautiful Florida coast.
And yes, it’s fully covered by us, no cost to you.

If you have NF1, NF2, Schwannomatosis, or VHL, come find us. Applications are open at beingpositioned.org

We don’t talk enough about the things that actually heal us…

Not the appointments, the test results, the waiting rooms and the second opinions and the explaining yourself over and over again.

We’re talking about the tiny things, the nourishing meal you made yourself, the sweet laughter with a friend, watching the sunrise...

The small, daily reminders to your body that you are loved and safe truly are the best medicine.