Ever since my brain surgery, I’ve been pretty much “holed up” (okay, I couldn’t help myself) in the house. The first few weeks were no time to venture out, what with significant pain and narcotics on board. I was able to rather quickly wean myself from pain meds but still fought overwhelming fatigue.
Initially restricted from lifting over 5 pounds, grocery shopping and laundry were a “no go.” And with no bending or lifting, Ashley’s care since her most recent stroke was at least temporarily not mine to manage. My life was now quite limited.
After the first postoperative visit, I was given permission to lift 25 pounds, and I was cleared to drive but only after the neurosurgeon was satisfied that my vehicle was equipped with all available safety features. Being spared any neurological damage (in and of itself, a miracle) likely played a significant role in his decision. So once I was off the narcotics, driving seemed a reasonable thing to try. With all the “bells and whistles” to alarm on my 3-month-old van, it was unlikely that I could miss a hazard, or not properly respond if I did.
But after my first outing, I made the rational decision to “unclear” myself. My very limited driving excursion proved too mentally demanding. Oh, sure, I got there and back with no problems, and I never believed I had put myself or other drivers at risk. But I could sense I was taxing myself with a short 15-minute drive, even yawning on the way home. I was reminded of Ashley’s yawning when we worked on academic activities that took a degree of concentration. As if her brain was a bit oxygen-deprived, she, too, would yawn and yawn. I was apparently asking a lot of her, and I was clearly asking a great deal of my healing brain to attend to driving a car.
And then a couple of weeks later I called my neurosurgeon’s office to get permission to fly to Mayo Clinic in Rochester, Minnesota. Testing and a follow-up appointment for my previous cardiac ablation had been scheduled months prior to my subdural hematoma. My husband had inquired of the neurosurgeon soon after my craniotomy whether I would be able to travel. He received a big “noncommittal.”
But my arrhythmia went into high gear with the brain injury. And a phone call days AFTER my surgery (of all times) indicated that the preadmit workup’s ECG “could not rule out a heart attack.” Wonderful. No one took much credence in the suggestion. There were many potential explanations for a false alarm. But solace would only be achieved by making my cardiac appointment to completely rule it out.
So I inquired of my neurosurgeon again if I could travel and he gave me permission. I hadn’t traveled anywhere in the year since Ashley’s stroke, and I was less than 6 weeks post brain surgery. I knew I was at least somewhat impaired, but I also knew I needed to go.
In preparation for my absence from home, I cooked for Ashley’s modified diet, cleaned, and did up the laundry. I was capable of picking out clothes for myself and properly packing, even remembering to remove unnecessary charge cards from my wallet, replacing them with necessary hotel and airline cards.
Unfortunately, I set my alarm an hour too early to make my morning flight. Not like me. I brushed it off, rationalizing that it at least gave me more time to prepare (but also gave me only 4 hours of sleep).
Off to an auspicious (and fatigued) start, we headed to the airport. Although too late to correct any omissions, my husband began our predictable checklist rundown. “ID?” I checked my purse. “No wallet! Where’s my wallet?” Had I left it on the kitchen counter when I pulled credit cards out and put cash in? Not like me.
We took the next exit to head home as we mentally prepared for missing my flight. My husband was kind enough to try to console me, saying, “It’s okay. I’m the one who typically does this stuff.” True. And I never do! (Or was that now “I never did?”)
Taking a moment to check around me, I found my wallet on the floor between my seat and the passenger door. “Here it is!” But how did it end up there? No idea. Not like me. Only losing a few minutes of travel time, we reversed course again and headed to the airport.
As I checked in for my flight, the kiosk at the airline counter looked strangely challenging. I stared at it intently, assuring myself I could handle it. I retrieved the correct airline charge card from my wallet. Finally inserting the card properly, I successfully checked in. The kiosk spit out my boarding passes and luggage tag, but the schematic for attaching the tag felt daunting. Not like me. I headed to the counter with tag in hand.
I told the airline agent I had had brain surgery only weeks prior and was afraid I would fumble attaching the tag to my suitcase. Indicating she had had brain surgery herself, she was understanding and reassuring. Once the tag was secured and the bag was checked, I walked away as she called out, “And congratulations on still being here!” Yes, indeed. It was cause for celebration.
Unfortunately, my precheck status hadn’t shown up on my boarding pass. Rather than walking straight up to a TSA agent, I had to negotiate the maze of barriers with no one in front of me to show the way. I struggled, and again when I had to remember to remove my shoes and to pull my laptop out of my bag.
It was as if I had drunk a pre-flight cocktail comprised of brain fatigue with a jigger of leftover anesthesia, and a splash of depression and disuse.
I felt vulnerable. Disabled.
In fact, I felt old. Words like “newfangled,” “cockamamie,” and “back in my day” came to mind. Even the pilots looked like a couple of “whippersnappers,” too young to be flying a plane, especially mine!
And I looked and felt far too old to pull off a severely post-surgery shaved head as an in-style undercut. I felt and looked like damaged goods.
Thankful for the long layover in Chicago, I successfully negotiated the O’Hare airport. I got a boost of caffeine from a Starbucks drink, found my gate, and settled in for the long wait.
On the final leg to Rochester, I was seated next to a young woman. She extended her hand and introduced herself as soon as we sat down, as if we had a prior appointment to converse. As we chatted I realized the surgery side of my head was visible to her and, at some point in the conversation, I thought my haircut deserved an explanation. “I’m not cool enough for an undercut. I’ve recently had brain surgery.” Ironically, she, too, had had a brain injury. Playing college volleyball, she was blindsided by a ball on the right side of her head. The blow almost immediately affected her vision and, after many months of recovery, she realized she had acquired a reading disability that she still must manage to overcome.
Doing nothing risky or out of the ordinary, we were both changed. Disability can be that way: easily acquired, sneaky, in a breath.
Unlike many with brain injuries, I am fortunate that I will likely improve and ultimately be able to laugh off my occasional mental impairment. I’m sure I’ll have “brain surgery with benefits” moments when I can dismiss my temporary foibles to a brain bleed and surgical procedure. Those around me can have a good chuckle at my expense with the expectation that with time I will recover and all will be well again.
But what about aging, potential dementia, likely mental decline, and permanent disability? Will the people around me be as kind and understanding when my mental status is declining and likely irreversible? When my independence is threatened? When I am less pliable, and the familiar becomes the unfamiliar?
This event has changed me. Whether I heal entirely in a physical sense, I cannot heal entirely emotionally. I have lived, and am living, if only briefly, with a disability and mental impairment. Peeking into my future, I have experienced what I might become.
I’ve always told my daughters to please intervene if, when I get older, I start wearing metallic tennis shoes and bedazzled baseball caps. Is that when all fashion sense has been lost, or when care has been thrown to the wind?
Or maybe the need for a no-holds-barred freedom of expression has finally arrived. I don’t intend to be one to embrace rhinestones, but it’s high time that I choose to write my truth, words and stories that I have held back for far too long. That’s before the memories begin to fade and the words are harder to come by.
The winds have shifted from the prevailing direction, and care is about to get tossed. It’s unfortunate that I needed a hole (or two) in the head and a brush with mortality, but at least I’m still here and a little wiser for the experience.