Header image: Adobe Firefly AI creation from the prompt “a dark hole at the back of a colorful brain”

one person’s path, 5 months into the journey

By Kate Vanskike

It’s July, and the sun is bright and the temps are creeping toward triple digits. I find extreme heat unbearable anyway, but this year, I have an added challenge. 

My brain simply doesn’t “do” bright light and heat. 

It also doesn’t “do” noises well — the familiar hum of background chatter at a restaurant or the classic rock albums I’ve always enjoyed. Certain people’s voices, whether loud or unintentionally sharp — those are bothersome, too. 

The nearly five months since I whacked my head on the steel bannister at a funky cafe in California, have been an ongoing introduction to life with a brain injury. 

The Slip, The Whack, The Diagnosis

I was thoroughly enjoying my Santa Cruz area excursions with my bestie when I cracked my noggin at that hipster joint. The lights were low and neon, the music energetic, the vibe electric. We were upstairs, about to settle into our selected seats when I slipped and hit the back of my head on the steel banister separating the upstairs loft from the open floor below. My head was bleeding and I was instantly hurting, but after ensuring the world wasn’t spinning and that I could walk, I went downstairs to wash the blood from my head and hands. 

When I approached the counter, the staff member exclaimed, “Was that YOU?” Given the layout of the counter just below the banister above, I asked if he had seen me fall. “No,” he said, “I HEARD it!” 

He heard me “ring my bell” – above the music and the people socializing? That was alarming. I asked for a towel and went to the restroom to clean up. When I returned to the counter to ask for a baggie of ice, the original staffer and a coworker were staring at me, wide-eyed, completely unsure what to do. At that moment, all I wanted was the ice. I never considered whether they should have been asking me to fill out an incident report. 

We stayed long enough to have our drinks — a blue tea for me and a smoothie for my friend — and returned to her home where I rested my head on an ice pack for the night. The next day, we hit the road and headed north to meet my daughter who would take me the rest of the way to SFO, and I flew home. The following day, I worked 10 hours in the office and led a lengthy board meeting that evening. 

And then, three days after scattering my neurons, my brain quite clearly said, “I am NOT okay.” 

The next week, I went  to urgent care. “Take a couple days off work,” the doc said. My husband took me to an emergency room, where, after seven hours of excruciating pain in a loud and crowded waiting room, I burst into tears just before being called back, completing a neuro exam, having a CT scan, and hearing again, “take a couple days off work.” 

With a new bothersome tingling down the side of my face, I was convinced something more needed to be done, I drove myself to another emergency room where I was whisked in for exams immediately, had an MRI, and heard the doctor chastise the others for not having told me to go into complete blackout: no screens of any kind, no reading, no light, no stimulation. 

Over the coming weeks, I’d continue to have follow-up visits, receive pain meds and hear that this was all “normal” for what they now labeled post-concussive syndrome. It has no estimation of duration, no standard plan of care, no answers of any kind. 

With all that ambiguity, I filed for federal leave from work and state paid leave while also trying to work shortened hours on days I felt clear enough to make the effort. 

The Changes

I’m an avid reader and a music lover. Having to limit both of these was one of the most difficult parts of my recovery. I was surrounded by books, unable to read. I wanted to enjoy music, but that became incredibly challenging. I couldn’t handle anything with words. How about classical music? Sure, but no piano, no brass, no high-pitched strings. How about meditative music? No binaural beats, no surprise chimes of a bell. Nature sounds? Too much stimulation. I did eventually find two acceptable options. Spotify will probably calculate my hours of listening this year and find that my most popular playlists were Peaceful Guitar and Mello Cello. 

I’ve never been much for hooded sweatshirts, but in those early months of avoiding all the distracting things in my peripheral vision (especially outdoors or in the car), I became a BIG fan of hoodies. I now have a collection. 

I adopted another form of self-care during these weeks of not reading or watching tv: skin care. My sister-in-law is the queen of it, and she sent a package of her favorite products to get me started. That was an unexpected bit of fun.. 

The Therapies

While limiting my screen time after whatever hours I managed to work, I began researching concussions and how to cope. I found stories of other people who were still trying to find “normal” after a year or two, and I began to fear I might end up with some permanent limitations. I also looked hard for the easiest ways to cope, researching the best options for “ice caps” to help with headaches and a plethora of ear devices to block out noise. 

For those interested, here are my thoughts on 3 ice caps: 

• TheraIce: This gel cap is comfortable and feels really good, for about 10-15 minutes, and then it has to go right back into the freezer. 
• HungoverAF: Yep, designed for those who may have had too much last night — this gel cap performs just the same as TheraIce; the only difference is getting to pick from stylish designs. 
• Headache Hat: The “original” of such options, the Headache Hat is a wrap that includes multiple little blocks of ice. This is not nearly as comfortable as a gel cap if you plan on resting your head on the back of your couch or on a pillow, but the cold stays cold at least 30-40 minutes, so I’ve come to love this one for times I’m up and doing chores or other activities. 
• Not a cap, but a simple big flat gel pack is a great addition to the freezer. These are available at any pharmacy, cost a fraction of the others named, and can be easily “molded” to wrap around your head however you want. When my headaches are especially awful, I choose the gel pack, cover it with a hand towel, wrap it around the back of my head, and wrap all of that in a bath towel, which is long enough I can drape over my eyes. I call it going into my ice cave, and it’s the cheapest, best relief. 

I can’t emphasize enough how much I have benefited from weekly visits at Providence St. Luke’s Rehabilitation Medical Center for neuro-therapy. These knowledgeable and talented caregivers have watched me struggle to do the slightest exercises, encouraged me to try more, cautioned me not to push too hard, and measured every outcome so they can gauge what to work on next. Though sometimes I leave neuro-therapy feeling completely drained, uneasy or in pain, I have seen great improvements over time and have every confidence that they know what they’re doing to help me in this crazy journey. 

The Questions in My Head

That journey continues, and so do my questions. Here are several thoughts I jotted in my “brain book” — a journal from my colleagues, which I use exclusively for documenting this injury and healing process. 

• Is this it? Is this the end of my life as I knew it? 
• Will I return to work fulltime or is there a chance I might not? 
• OMG, what if I have to be considered disabled? (This is NOT a knock on disabilities themselves but on the legal processes one has to go through for protection.) 
• Am I being overreactive? 
• Am I handling my emotions the way I think I am, or are others perceiving them differently? 
• Do I question myself too much? Not enough? 
• What is the higher purpose of this brain state? Can it lead to a different consciousness? 

A few pages later, I started writing my own answers: 

• Sure, it’s the end of an old me, because now I understand more about the fragility of the head. 
• Yes, I will return to work I enjoy. I will heal from the injury enough to live the life I want — maybe with a few sensitivities I didn’t have before. 
• For gosh sake, quit being so dramatic!
• Sure there’s a higher purpose. Seek the mystery!

The One Constant Good

Okay, two. 

I count my lucky stars that I had begun a fairly regular practice of meditation prior to my head injury. I was acquainted with sitting to do nothing, to accomplish nothing, to think of nothing. I loved the occasional silent retreat. On the many, many days of putting myself in an “ice cave” and resting, I was at peace and comfortable with just being. Had it not been for my meditation practice, the last few months would have driven me crazy. I can’t recommend it enough. 

The second, no doubt, is the faithful prayers and well wishes of friends and family. And friends OF family. And their families. The line of pray-ers was long, and I was greatly encouraged. 

Looking Ahead

I’m not finished healing yet. When people ask how I’m doing, I like to say: “I’m at about 90%. And that last 10% is a bitch.”

Progress is great, but I still wonder if it will ever be complete. Maybe I won’t get past 90 or 95%. That’s probably why I am constantly and subconsciously trying to protect myself. 

My neck muscles are a rope holding on to my head, fearful of any bump that might rattle the synapses again. I carry pain relievers in every bag, keep them in every car. I pack my ice caps, and ice packs for the ice caps, on any long excursion. I keep buying sunglasses and hats. I look at my weekly schedule to be sure I don’t have too many activities hitting too closely together. I socialize very little. I plan when I’m going to the grocery store to avoid the most chaos. (Pro-tip: Look for stores with special hours for shoppers with sensory issues! Even WalMart has dedicated times when the music is off and the lights are low.) 

I’m also learning to advocate for myself. If someone is talking to me but there is a glare coming in the window making it impossible to look at them without having light pierce my head, I ask if we can move. If someone is talking exceptionally loudly, I ask if they don’t mind lowering their voice, and I explain that it’s because I’m still recovering from a concussion. I don’t need the world to cater to me, but I should ask for what I need if I don’t think it will be a major inconvenience. At the office, I asked if a private room previously designated for nursing moms could be repurposed as a meditation or quiet room since we no longer had nursing moms in the building, and because everyone can benefit from stepping away from glaring florescent lights and computer screens. I added a footstool and pillow to the room and try to retreat there once a day.

I’m still learning to let my husband be extra protective. I’m still trying to acknowledge that my head injury has greatly impacted him, too. I recognize that while I’m processing constantly, and trying to get back to “normal” without ever reaching it, I’m often acting like nothing has happened, and that can come off as really ungrateful to him. (Thank you, Jeff, for being my rock.)

Hopefully in another five-six months, I’ll have less frequent headaches and tolerate more of the activities I love without so much concern for how I might “pay” for the enjoyment later. Maybe I’ll blaze through books again, buy concert tickets, and return to evenings with Jeff watching videos of our favorite psychedelic bands.

But until I can handle that, I will continue finding and practicing grace, and learning to let go of expectations. That is the concussion recovery prescription I find works best.

Have a question or want to chime in with what has worked in your concussion recovery journey? Leave a comment.