A brain injury turns a writer into an ‘activated patient’ focused on the beauty of the now

How old is Claire Snyman? “I am now…” she says with pause. “I always have to think. I have a brain injury as a result of my surgery, so many of these things do not come naturally to me.”

The thought arrives. She is 47. But on this day in late August, there’s a more important anniversary: 11 years since doctors removed an expanding mass from her brain. And a decade of learning to live in between the known and unknown, the pieces remembered and lost.

Snyman, a writer and former international marketing manager for a biotech company, remembers waking up in the ICU after the procedure. “I realized I actually made it, and I’m going to do something with what this experience has taught me.”

In her long recovery period, she began typing in her laptop — spilling out a page, then 20 pages and then a whole book, “Two Steps Forward: Embracing Life with a Brain Tumor” — about what she was feeling and going through. From there, her work extended to speaking engagements, working with health officials to document patient experiences, writing research papers, and helping create a peer-to-peer support network for brain tumor patients in Canada, where she lives with her husband and teenage son.

STAT spoke with Snyman about growing into an “activated” patient, grappling with memory loss as a parent, the patience brain-healing requires, and more.

This interview has been edited for brevity and clarity.

What were the first signs that something was going on in your brain?

It all started in 2010. My son was four. I was working full-time. And I suddenly had this onset of vertigo. I woke up one morning and, like, the room was, like, spinning madly. I literally couldn’t even get out of bed apart from make it to the washroom because I thought I was going to be ill. I couldn’t get out of bed. I was exhausted. And it took a day or two for the vertigo sensation to go away. But then I got this headache and I’d never really had headaches in my life before.

Long story short, [in the ED] they did a spinal tap to check if I had meningitis. But they also sent me for a CT scan just to check what was going on inside my brain. That’s when they found that I had a non-malignant brain tumor. I saw the neurosurgeon, and he said it’s not of a size that we need to be concerned about right now. “We’ll follow you every year with an MRI every year to see what it’s doing. We’ll give you medication for your migraines, if there’s any flare in your symptoms, come back.” And so I did.

How did it go from “don’t worry” to brain surgery?

Everything had been going well for two years. Then I woke up again in bed with the lights spinning. I took my migraine medication because I thought maybe it’s a migraine doing the vertigo thing. Then I got a mother of a migraine. I took what I knew I could take, along with Tylenol and ibuprofen and everything. I went to my GP and said something’s not right here. And she said, “Absolutely, you need a CT scan.” So she sent me to the ED with a note and everything.

I got there and the ED was slammed that day. The physician said, “We’ll give you I.V. migraine meds and then we’ll send you home.” And by then I was not in a good place, so I didn’t say “no, I want a CT scan.” When a patient is vulnerable, it’s hard. Even though I’m a highly activated patient, it’s hard for us to still push against a physician when you’re in the ED.

I eventually got a private MRI. That’s how this works here in Canada. And it showed my tumor had doubled in size and was actually blocking the cerebrospinal fluid in my brain. So I had hydrocephalus. My legs were actually starting to feel weak, I was starting to forget things. And my husband’s like, “No one is touching your brain. I don’t actually feel safe here.”

We flew to the U.S. with my son, who was 6 years old, and we did that because my husband said, “This is your brain. This is your life.” And I had my surgery there. And by the time I arrived, I was pretty much straight into the ICU and had my surgery the next day.

Your brain injury, was that a result of the damage the tumor had already done before it was removed?

They say it’s a cumulative effect from the surgery, the hydrocephalus, and I had aseptic meningitis after my surgery. It took me 18 months to recover from my surgery before I could go back to work in any form. And when I did, I noticed a massive difference even during my recovery. But I thought that was normal because a lot of people were saying, “Oh, the short-term memory was bad.” Post-it notes were my absolute friend — stuck all over the house and everywhere. My husband and my son noticed that as well, because they live with me. They noticed big chunks out of my long-term memory.

My husband would be talking about things we’d done and I’m like, “Did we do that?” Or “Have we been there?” And he’s like, “Of course we’ve been there. We went there five, 10 years ago, don’t you remember?” It’s like a hard drive that’s been pulled out — like a big gap.

What was your recovery from surgery like?

I felt no pain in my head, in my brain. What I didn’t realize was the fatigue. Oh my gosh. I was sleeping for something like 16 to 18 hours a day. I would get up and come down, make breakfast, then I’d go back up to bed and I’d sleep again. It was unbelievable. I suppose that’s the only way the brain can recover, is actually when you’re asleep. I think even up to a year later, I was still napping every single day. I wasn’t working, but when I was able to drive again, I had to work that in — when I was going to nap versus when I was going to pick up my son from school. I didn’t realize how intense that was going to be. And if I overdid anything — and “overdid” was “Today I’m going to do the laundry, I might make dinner” — the next day I’d be flat out. So understanding my battery capacity was integral to making it through that recovery period.

The other thing I wasn’t aware of was the mental health aspect of it. I think because of the challenges I went through in accessing care, because I had medical negligence happen to me, I had PTSD after my surgery, which I didn’t even realize I had. But every time I went to sleep, just as I would lie down and close my eyes, this whole film reel would go through in my mind of everything that led up to me going to surgery.

During recovery, you couldn’t really take care of your son most of the time. What was that like for you?

That was really hard because as a parent you want to be involved and you want to do things and be present. I didn’t have the energy. My body was just so focused on healing and recovering. I remember those days when I was able to start doing things and boy, oh boy, do I not take that for granted anymore. I remember so distinctly being able to kick the soccer ball outside in the backyard with him for the first time again — it even brings tears to my eyes.

I realized that really quickly: with kids, it’s the small things that count. And so I tried to make time each day, even if it was 10 minutes, just to sit with him and do something that mattered to him.

Given that you lost and I assume haven’t recovered some of these chunks of memory, how have you processed that or made peace with that loss? We rely on memory so much for relationships.

Oh, that’ll probably make me cry. It’s a hard one because I have realized that over time. What I think of today and know today, I might not know in 10 years’ time. And that’s a hard thing to know as a parent and as a wife. But I can’t live in the future, I can only live in the present. That is the beauty of it all, and that’s what I have to make peace with. And so that’s why I have lots of photos and lots of videos, and that’s the best I can do. And I’m grateful for that. But it is so true because a lot of people, my friends, will say, “Oh, I remember this about my kids.” And sometimes I’m like, “Oh, I don’t remember that.” But you know what? That’s just how it is. I have so much else to be grateful for. And that’s just….That’s OK. That’s what I make peace with because I can’t do anything about that part.

“Living With” explores the contours of life with chronic illness, from the prelude to diagnosis to new patterns of living, to wrestling with big questions about illness and health. Would you like to share your story of living with a chronic illness? Email [email protected].

STAT’s coverage of chronic health issues is supported by a grant from Bloomberg Philanthropies. Our financial supporters are not involved in any decisions about our journalism.