My Hole(s) In the Head

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.

Mortality & Morbidity

It had been a week of an excruciating headache that finally ran me from primary care physician to outpatient CT scan of my head to the emergency room, all in a matter of 2 1/2 hours. Diagnosis: subdural hematoma. Cause: indeterminate.

The neurosurgeon in the ER knew my husband. They had worked together twenty-five years ago. Comforting.

Contrary to other neurosurgeons I had met over the years of being married to a physician, he seemed to be “more normal,” exhibiting a good bedside manner. Thankfully. (Each medical specialty seems to attract particular personality types. I’ll leave it at that.)

He asked about trauma, the most likely explanation for the bleed on my brain. I had no memory of any.

He asked what I do, likely as much a test of my word recall as his particular interest in me. That’s always a hard question to answer, even without brain trauma. But, after rattling off a series of activities and accomplishments, I stopped and said, “Honestly, first and foremost, I’m a mother and a caregiver. That’s my most important job.”

He heard “author,” a fact that barely describes my history but, nonetheless, was a snapshot in a scrapbook of my life events. He anticipated I would be potentially hospitalized for days, and down for longer. “You should write,” he said. “Have someone bring your laptop.”

My headache so excruciating, I couldn’t imagine writing, much less articulating anything coherent. But he insisted I could look back on it as “that period of early brain recovery” that might be “interesting to go back and read.”

“Have you read the book My Stroke of Insight?” I had not read the book but had watched her TED Talk more than once. I had shared it with my husband, thinking it might provide some insight into brain recovery following the recent stroke of our oldest daughter just 9 months ago. My husband chimed in about “how fascinating.” And it was!

And then the neurosurgeon said, “I looked up her lesion. Yours is potentially much worse. You should write.”

Much worse, you say? Much worse??

Pause. Bedside manner just jumped the tracks.

A long sustained pause in my painful brain began as my husband and he talked medicine, and they discussed my future.

All I could think: mortality, morbidity.

My God, I hope I continue to have the opportunity to write. That’s all. To create. To breathe. That’s all. Pain free. To think. That’s all. To think.

That’s all.

And then I was admitted to the intensive care unit. And I prayed that my doctor would be treating the whole person.

I am so much more than a brain.

I didn’t ask for my laptop. I wanted the screaming of my brain to be silenced. Calmed. I wasn’t ready to give it a voice. And I had to hang on to the hope that I had time. Time. Time. Time.

Stroke

She was swaddled in a tightly woven cocoon, spun with threads that pulsed from spasm to rigidity.

Hanging on by the thinnest filament, she was enveloped in darkness while the hum of life was dulled by a heavy cloak of paralysis.

Unable to move at will, her body existed in a state of suspended animation, tethered by an overwhelming tug.

A prisoner in repose, she dreamed of what once was and fantasized of what was not to be.

Blinding rage ebbed and flowed as her mind played tricks on her, and her soul searched for an escape.

After months and months, when it finally felt safe, she pushed through and slowly spread her wings into the pain.

She watched as if a detached observer of her own body as one wing emerged badly damaged.

Tears began to flow, landing among the deep, vibrant hues. They glistened on the overlapping pieces that defined her.

Others drifted and fluttered above her, unable to look past her confused movements, transfixed by her disability.

She was extraordinary, so delicate and yet so resilient, so rare, and so misunderstood.

Confused and scared, her cocoon was repaired and readied as she quickly retreated, spinning a wrap to muffle her screams.

She rested as she prayed that the next time she emerged others could accept her.

More importantly, she prayed that she could once again accept herself.

Kimberly S. Voss

(It has been 9 months today since my oldest daughter’s most recent stroke. All these years, through all her challenges, she has always been the consummate teacher. I am trying to be a good student.)

Hombre de Pollo

It’s a name my middle daughter came up with for the Whole Foods guy, the one who packaged up her organic chicken when she was on a six-week cleanse. She bought a lot of fresh chicken, saw the guy often, gabbed back and forth, and hence the funny name.

Fast forward a few years and I have my own “hombre de pollo.” My guy has a long, braided ponytail and a dry wit. We always seem to jump right into the back and forth banter, a pun or two thrown in for good measure. He tends to joke about getting my order wrong. I play along, suggesting what I’ll do with the potential overabundance of chicken.

After many encounters, we recognize one another. I always enjoy seeing him. “Hombre de pollo.” Yes, indeed.

I shopped late last night after a long, hard day. I was limping again, reinjuring a relatively new groin pull from lifting Ashley. I waited until it was slow at the counter to hobble back to the meat department so I could finish up quickly and get home.

Sure enough, my guy was there.

Preparing for an upbeat encounter briefly lifted my spirits. I was still recovering from having to advocate for Ashley at physical therapy earlier in the day. It’s been decades of it, but even more acutely these last 9 months. I occasionally have to be “that person” and, to be honest, I hate it. I’m tired of the fight. Bone tired.

“Hombre de pollo” and I always start our usual convo with me characteristically asking him about his day. But today was refreshing because, well, he was honest. “It was just okay.” “Not so good today?” “No,” he said. “To be real, not so great.” I chimed in, “Honestly, mine either.” “Weird,” he said, “but it’s as if nobody is really prepared to hear the truth.”

I felt this moment of refreshing vulnerability. I don’t get to experience that much and just blurted out, “My oldest daughter had a stroke 9 months ago. She was already managing disabilities, but it’s been devastating.” “Oh, man…” “Yeah, how would you have known? We both put smiles on our faces, and no one ever really knows the truth.”

He then shared with me about a woman he dated. “She had a two-year-old daughter. The little girl was fighting acute lymphoblastic anemia. I was there for the whole thing. Man, it was tough.” Hoping that she made it, I asked, “How is she now?” “She’s 7 and full of energy. You’d never know. But, you know, she’s got to be followed for the rest of her life.”

He handed me my chicken and said, “Somebody needs you. You step up.”

And he’s right.

Please, give and receive being real with the people around you today. We cover up our pain with a smile and a “doing fine.” More of us are hurting than any of us realize, and one of us just might benefit from some authenticity. I know I did.

Eureka! (Springs, that is)

In an effort to unwind after a series of rough months, I planned a two-day getaway with my youngest daughter for some writing and relaxing. After a bit of research, and limiting our travel to a two-hour drive, we ended up at a quaint bed and breakfast in Eureka Springs, Arkansas. (Okay. So much for the 2-hour drive. I miscalculated. It was 3.)

The relaxing part was going well for the both of us, but my daughter was having much more success than I in the writing arena. I felt bogged down with recent life events while her fingers were flying on her keyboard.

It reminded me of the guy I sat next to in a college biochemistry exam. I felt less than prepared while he was furiously writing the answers.

Wait a minute. I married that guy! Now I was sitting next to the ginger female version, slash English and literature grad school student, generating a fun blog post. All the while, I was searching for literary meaning in the crazy minutiae of my life.

Yep, before I knew it, she’d hit “Publish Now” and her piece was already posted.  Then, within minutes, “Oh! I just got another follower!” “Ohhhhh, two people just liked my post!”

When I read what I had written out loud to her, it sounded all angsty and depressing.

Her suggestion? “Mom, write something pithy!”

“Pithy? Pithy, you say??” Um, my life does not scream “PITHY!”

“You know! Something lighthearted!”

But in all seriousness (or, in all lighheartedness), my life isn’t without humor. Even this mother/daughter trip has had its share of giggles. Miscalculating the travel time got a few laughs. And then there was the first stop for gas and a snack (since I miscalculated the travel time). Standing at the checkout, a female voice behind me said, “Ma’am, are you sure you wouldn’t like some gum?” I turned around to see a toothless woman restocking the Dentyne and Doublemint with a big friendly smile.

“Oh, no, thank you!”

Hmmmm. I thought I saw the irony? But, to be sure, I ran it by my quick-witted daughter when I returned to the car. She concurred.

The first night at the bed and breakfast, we had our share of chuckles reading Facebook newsfeed comments about a poor guy hospitalized in Tucson who apparently had no recollection of who he was. One person suggested he had concocted the story as a way to get out of paying for his hospitalization. (That would be clever of him!) Another suggested he was Richard Gere’s younger brother. (If true, lucky guy!) And yet another suggested getting into his wallet to check his driver’s license? (Heck, why hadn’t the authorities thought of that?)

And then there was literally a psychic who suggested English was not his first language, and that he had a wife and kids “back home.” (Okay, Ms. Psychic, if you could be a bit more specific on the “back home” part, we might have a legit lead on figuring out who the heck this poor guy is!)

And so maybe I didn’t come up with some meaty blog post on this trip. But that’s okay. My “getaway takeaway” is that life ain’t so bad after all. I still have my teeth. I remember my name. And I will eventually find my way home with a daughter who writes like a champ, and finds her mother at least mildly clever and amusing.

Yep, life ain’t so bad.

One Year: My Opinion Stands

I wrote this just after the election and, for a myriad of reasons, I never shared it. I also marched a year ago, but this year I could not attend. Maybe sharing this now is my way of protesting in absentia.

For me, this has been an enormously painful year, enduring the persistent assault on values I have worked hard for and hold dear, from education to the environment. Personally, this administration cannot end soon enough.

Dear Mr. Huckabee: A Nation of Dissonance Rather than Harmony

A day after the election, Republican politician Mike Huckabee wrote, “The sun somehow seems to be shining more brightly and the birds singing more sweetly. Or perhaps it just seems that way to me.”

Yes, sir. It’s you, Mr. Huckabee. Your remarks, and similar remarks by others since the end of the election, are offensive to many. This is not because he won and she did not, but rather that your words attempt to dismiss, or diminish, the issues related to the presidency and ones that continue to divide this nation.

Some of us have firsthand experience and, therefore, the ability to identify malignant narcissism. Understand that you may not recognize the oft- missed signs, and how narcissists desperately need their “tank filled” with adoration and praise. You may not recognize how they fly off the handle whenever their thin gold veneer has been pulled back, concealing significant character defects. When his “tank is running dry,” he must “fill up” at the expense of others to appear “brilliant,” “the smartest,” “the best.” Accept that you may not be able to smell danger like those who have lived it. We recognize master “shape-shifters,” projectionists, and individuals who are void of empathy. You perceive “strength” and “confidence,” while we observe narcissistic rage and narcissistic supply. Respect the fact that some of us know how it can lead to instability, abuse, and worse.

Respect the fact that some of us have firsthand experience with institutional discrimination. While some are “tone deaf” to it, others perceive discrimination through pitch disturbances and nuanced noise. While you may only hear unpleasant sounds that elicit claims of “racism,” “bigotry,” “homophobia,” and “xenophobia,” others hear frequencies that you either select not to hear, have been trained not to hear, or that you simply cannot perceive. For those subjected to discrimination, it sounds like the series of clicks as the hammer of the gun is readied. Squeezing the trigger is nearly imperceptible, then the hammer of the gun snaps and the explosion is deafening.

Respect the fact that some of us were the objects of unrelenting bullying. The bully was the one who fed off the putdowns and name calling of others, often using the slick guise of humor, emboldening their fellow tormentors while gleefully watching their victims contract. You may have never been bullied or choose not to recognize bullying because it makes you uncomfortable. Or perhaps you are the bully and do not identify it as a problem.

Respect the fact that some of us have firsthand experience with sexual assault and/or sexual harassment. Words can serve as triggers, as memories of assaults resurface, years or even decades later.

Many believe we have elected a man who is a malignant narcissist, racist, bully, and misogynist all rolled into one. Some of us have banked our experiences over a lifetime and go to great lengths to avoid any one of these loathsome types.

Now that he’s been elected, we are told to “get over it.” “Give this guy a chance.” I didn’t vote for him, but I hope for the sake of my country, and for the sake of my family, that he is not what many of us fear.

We can both agree that the intensity of sound is measured in decibels. But neither of us can perceive what the other hears. In my estimation, this election has proven that the nation is a chorus of tone-deaf individuals incapable of recognizing that they are even tone deaf. Sure, everyone has a right to sing, but that does not diminish the discomfort for those who possess relative pitch.

This nation is one massive chorus, and we must overcome dissonance so that you, and others like you, are not the only ones who are hearing “the birds singing more sweetly.”

Holding On

For as long as I can remember, we’ve been hand-holders, her skin always so soft and her touch seldom anything but gentle. Driving in the car together, we often clasped hands while I sang silly songs and she laughed. And we always held hands while walking, guiding her as I walked slightly ahead to avoid potential hazards and obstacles she might not otherwise see. Yes, it’s always been an important aspect of our relationship, and the stroke wasn’t going to deter our long-established habit.

Throughout the day and night during her hospitalization, I pulled up the reclining chair as close as possible to the left side of her bed. Placing it in just the right position, I was able to carefully wind my hand between the rails of the hospital bed. At night we clutched each other’s hands in the darkness, the sound of her IV rhythmically whirring at the head of her bed. She softly repeated “home, home” as she drifted in and out of sleep. I lay awake as I worried, scared whether we would make it home together, or whether home would ever be the same for either of us.

Finally discharged from the hospital, we were in inpatient rehab where we were given a room that accommodated two hospital beds. Every night I released the brake of my bed to move it closer to hers. It would sing a high-pitched tone as Ashley giggled, amused by the idea that I had somehow broken my bed. I looked forward to the nightly ritual as I was comforted to hear her laugh, once again affirming that her humor had not been lost by her devastating circumstance.

I aligned our beds before setting the brake, adjusting my bed’s height to match hers, and then inclining her head to 30 degrees to address her feeding tube. It was the same for twenty-four nights: the brake, the noise, her soft giggle. And one night after another, I wound my right hand through the rails of the bed as we held hands throughout the night. Ashley no longer said “home.” She must have recognized that our room in rehab was home for now, and that she was not yet prepared to tackle the demands of her previous life.

Upon discharge and finally home, I slept with her in the same bed. Transfers to and from her wheelchair, and in and out of a four-poster bed, were now all but impossible. Her queen-sized bed was broken down, mattress and box springs placed directly on the floor. Each night, after placing her in bed and stretching ligaments and tendons, I carefully propped her right arm on a pillow to reduce the swelling in her hand and fingers. And each night, as her right arm lay limp, her left hand was in my right as our fingers intertwined.

But something has happened since her stroke, and since returning home. The gentleness she once had in her touch has become demanding and agitated. She searches for my hand in the darkness and holds on with a firm grip. And when our hands happen to unclasp in the night, she frantically searches until she can again tightly hold my right hand within her left.

Her skin is still as soft as ever, but her touch not so much. I recognize it as a byproduct of the stroke, as are the bruises and cuts up and down my arms.

I willingly care for her, transferring her to and from the toilet, the shower chair, the bed, her wheelchair. But I am left to protect myself from her grip: grabbing a fist full of hair, pinching the fleshy part of my arm, or digging her nails into the back of my hand until she finally lets go and the skin is pierced with crescent moon-shaped cuts.

She is now dependent upon me for everything. And she’s angry. It’s apparent in her touch, but I can also see it in her eyes. The stroke has robbed her of far too much. What was once a simple task must feel overwhelming. Just a swallow, a simple swallow, now takes careful planning from a body she can no longer count on.

She’s also got to be scared. I know I am. There is still so much hard work ahead. We are only three months into this journey. The cuts and bruises can serve as a reminder that she is thankfully still with us, and her soft skin a reminder of how things were and where we hope to return.

But, in the meantime, I’m not letting go of that hand. It’s not time. Not yet anyway. In fact, it may never be. No matter how much anger she exhibits, no matter how hard she pinches, no matter, I am not letting go.