Okay, What’s Next:

What next

In late 2024 she had just turned 27 and was doing well. A support group twice a week. Her local fiber arts community. A dog sitting job just accepted, and a house of her own in progress.

"Like I felt independent, right?"

Then a car came at her going the wrong way. She had a traumatic brain injury, and out of it came epilepsy.

"It was not in my plan."

The seizures started small and grew over a few weeks. One day she felt wrong enough to ask a parent to drive her to the emergency room, and had her first tonic-clonic in the ambulance.

"I'm pretty used to medical complexity," she says, having managed serious health problems for years already. Asked twice what went through her mind, she gave the same answer. "The main question for me is like, okay, what next?"

"So I'm not crazy"

Diagnosis took three or four months, which she knows is fast: a 72-hour video EEG returned a result inside the first day.

Until then her abnormal test results had been read through an existing PTSD diagnosis and treated as a mental health problem.

"I think the first words that flew out of my mouth were, so I'm not crazy. Because up until then I had been treated like I was."

Enough argument over whether the epilepsy was real stalled her treatment, and she went through three neurologists before one looked at everything.

"I quite literally am not exaggerating when I say she saved my life."

What she took from that generalizes. "It's very wise to get a second opinion if you just know that there's something else."

That neurologist works top-down: the most dangerous seizures first, then down toward the smaller ones. Indie is on four medications now. The epilepsy isn't fully controlled, but the big seizures are much better. Earlier, a seizure that ran more than fifteen hours before it was stopped left permanent damage to her cerebellum, which she manages alongside the rest.

She doesn't call any of this acceptance. "There's this type of grief that I don't feel like can be quite understood until you've lost something health-wise." What she knows now is that it moves. "Grief kind of comes in waves, and it's okay to kind of ride those waves."

The soup of life

An app on her watch alerts people if she starts convulsing, a camera in her room if she seizes at night. She can't drive. She can't go places by herself. She can't swim or take a bath.

"I've lost quite a lot of freedom. And that part is hard for me, because I consider myself a very hyper independent person."

She's autistic, and says it turns out to be useful: she is rigid about routine, so she is up on time for her medication whether or not she slept. "My options to me are either that or have a seizure and potentially go into status."

The rest is a long list of small vigilances. No caffeine, no alcohol. Stay hydrated, stay fed, avoid heat, which she points out is not easy in Texas. Under it all, the fatigue, which is pretty constant.

She has an amendment to the spoon theory.

"Sometimes we're not even handed spoons. Sometimes we're going at, like, the soup of life with a fork or chopsticks."

Being an aunt

Asked when she feels most like herself:

"Being an aunt is my favorite job."

Her niece is four and her nephew just turned one. She doesn't want children of her own. Being their aunt is "one of my favorite things about living."

She mostly stays home unless an appointment has to be in person. The days are crochet, studying when her brain gives her the room, the niece and nephew when they visit, close friends kept up virtually.

Two people get credit for her still being here: that neurologist, and her patient advocate, who works from Maine and goes on speakerphone whenever Indie is in the hospital.

"She knows what to say."

Not your people

One change she wants is small: basic seizure first aid taught as commonly as CPR.

For anyone newly diagnosed and afraid this is all they are:

"It's a diagnosis, not necessarily an identity. You may be epileptic, but that's not at all all that you are. You're defined by what you do, what you love, what you put into the world."

And the part she wishes someone had said to her: don't pressure yourself to look normal. Her brain is wired differently now, with things to avoid that other people don't.

"If that is seen as a burden to people, those are not your people."

This is not it

A good life would mean the seizures controlled and some freedom back. She isn't there yet.

"But I do have hope that I will."

She still wants the advocacy work, and names the obstacle herself. "I have a lot of interpersonal things to get through first, such as having trouble speaking with people that I don't know."

She said that forty minutes into a call with two strangers, about the hardest two years of her life. The interpersonal things may be further along than she thinks.

One more thing, thought about in advance.

"This is not what defines me. This is not the end of my story. I see so much ahead of me and this is not it."