In Hope of Space to Write

I haven’t “written” with pen and paper in years. I admire people who can, as their thoughts are expressed through the graceful movements of their hands. I’ve long since given up on that method. Having written almost exclusively using technology – from book to software manuals to letters to blog posts – I wholly accept that I function better with the opportunity to move words and lines of text around a page with copy & paste, insert, and delete. What can I say? While some writers literally embrace their journal and favorite pen, I embrace my keyboard shortcuts.

In the last 15 months, I have been left to improvise. Ever since my oldest daughter Ashley’s stroke, my days have been extraordinarily full. And I’ve slept in the same room with her, first in a chair in the hospital, then in a hospital bed in rehab, and now on a twin-sized bed beside hers at home. To be honest, more often than not, I’m not really sleeping much at all. I worry. I ponder. I read. And I “write.” More accurately, I “hunt and peck” my thoughts and emotions, memories and stories, using the Notes app and a single finger on the keyboard of my smartphone.

I’ve got it down to a bit of an art form, ducking under covers so that the soft glow of my phone doesn’t wake her. When she stirs – or most often whispers “hi” – I quickly drop my phone face-down on the mattress and pretend slumber until she falls back to sleep. If sleep hasn’t overtaken me while waiting, I’ll peck out a few more lines before finally succumbing to fatigue or a dearth of cogent thoughts.

But my smartphone makes a habit of ridiculing me, reminding me how foolish I am for my inability to sleep, tracking hours of phone usage, and the frequency of my disturbed sleep patterns from a tiny device strapped to my arm. It doesn’t dispense style points for my creative way of writing. It only knows to reinforce the fact that insomnia begets smartphone usage, and smartphone usage begets insomnia.

A smartphone isn’t the most efficient method for composition, better designed for eye strain than prose, but it’s all I’ve had for quite sometime. It does have the nifty built-in spellcheck, a dictionary, and Google. Internet searches can be a bit of a distraction, but can also serve as a handy tool for research, literally under the cover of darkness and a warm set of flannel sheets.

While my sleep patterns have still not become less disturbed, Ashley’s finally have after all these months. She often struggles to initially fall asleep but, many nights, she now sleeps through the night, or only awakens once or twice in need of my help. There’s now more of a pattern and predictability that allows me to come to terms with my sustained status: the twin bed, the insomnia, and the still overwhelming need to write.

Consequently, I’ve decided to attempt to create a new writing space, one that I might be able to escape to near her upstairs bedroom. Once she’s soundly asleep, I could write vertically rather than horizontally. Wouldn’t that be novel? (I swear I don’t go looking for puns. Somehow puns just find me.)

Being honest with myself, related to not only my physical circumstances but my emotional ones as well, gives me the opportunity to create solutions. And being honest with my thoughts and words may make my composition begin to appear on the page as “upright,” just as my frame will be sitting in a chair again.

Here’s to new spaces and new potential writing opportunities.

I’m hopeful.

And here’s to plain ol’ hope. “Where there is no vision, there is no hope.” Better yet, where there is no hope, there is no vision. And writing is, let’s face it, a hope to be seen. (And that would be a whole lot more likely if it were not from underneath the covers.)

Take that, smartphone! Your judging days may soon be over.

Gold, Shakespeare, and Civil Rights

I realize more and more as I age, and especially during these trying political times, how much we are each a product of our individual life experiences. The simple things, like the neighborhoods we grew up in, the schools we attended, the cities we’ve inhabited or traveled to, and the religious beliefs we have been exposed to, surely must have a lasting effect on our personal values.

Opportunity has affected each of us as well, whether benefiting by sheer luck, circumstance, hard work, or, more than likely, a blend of each.

And then there are those more complex life events that are not of our doing. Whether we’ve experienced food insecurity. Whether we’ve been victimized by bullies. Whether we’ve lost a friend or family member to gun violence, a drunk driver, suicide, or medical malpractice. Whether we manage chronic health issues or disability. Whether we have been sexually harassed or sexually assaulted. Whether we have endured infidelity in our marriage, or been abused, neglected, or abandoned.

Or whether we have experienced unexpected and random acts of kindness. Whether we have benefited from unconditional love or a committed relationship. Whether we have lived in a loving home with compassionate parents. Or whether we have been blessed with good health.

It’s as if shiny pieces of gold are passing in and out of a coin purse called “life,” making each of us feel “rich” or “poor.” Angry or content. Compassionate or malevolent. Emotional or dispassionate. Integrated or isolated. Included or excluded. Generous or stingy. Empathetic or indifferent.

In our time of social media, we are offered an often unsettling peek behind the curtain, a bit like a train wreck: unpleasant to look at but oddly difficult to turn away from. Seeing friends and strangers, in a sense, naked. Overtly uncaring, biting, intolerant, racist, name calling. Casually throwing around generalizations and stereotypes that can cut another like a knife.

For some, the experience can be nauseating, anxiety provoking, and enormously depressing.

But for others, fanning the flames appears invigorating, a life force, “justified.”

For me personally, it is unsettling, potentially revealing a disturbing synthesis of life experiences.

Or is it that the life experiences of others have, through no fault of their own, been “lacking?”

It causes me to reflect on periods of my own life as a victim of discrimination, segregation, and abuse of power. And I wonder how much that has shaped me. I wonder whether others have been touched by these same things, or whether they are living in an alternate reality of sorts, a safe bubble, unable to understand the disturbing sense of vulnerability experienced by others.

I wish I knew.

But I have had many life-changing experiences that have deeply affected me. A more civilized form of jungle warfare, it has no doubt altered my thinking and undermined my trust of others, and of protections afforded some by our society.

I have a vague recollection of how I felt a few decades ago, before so many disturbing events landed in my life. I recall feeling calmer, safer, more self-assured.

But my child’s civil rights, and therefore mine, have been threatened on multiple occasions, over decades. It has changed me.

Your child’s civil rights have likely never been at risk.

Your child has likely never been told they cannot attend their neighborhood school two streets from home. Rather, they needed to be bussed to a different school miles away. Mine has.

You have likely never been concerned about your child’s access to something as simple as a public school playground, a medical building, a restroom, or the opportunity to participate in a school holiday program. I have.

You have likely never been subpoenaed, multiple times, while trying to stop segregation and discrimination, or health-harming practices, for your child and others in a public school district. I have.

You have likely never had altered documents used by your child’s public school to deny them an education. I have.

You have likely never had to “afford” tens of thousands of dollars in legal fees to defend the rights that others take for granted. I have.

You have likely never been the prevailing party in a court case appealed to a state’s supreme court in an effort by your public school district to wear down, intimidate, and empty your pockets. I have.

You have likely never had an agency of the government suggest institutionalizing your child. I have.

Maybe you have never seen this level of deceit and corruption? Malevolence? Disregard for the life of another? I have.

“You are an alchemist; make gold of that.”

I have. But it has been at a price.

I am white. I am an American citizen.

So is my child.

But my child is disabled. My life experiences tell me that shouldn’t matter. Nor does skin color, nor age, nor religious affiliation, nor sexual orientation.

It must be that alternate reality that some live in. I have no other explanation.

“I am not what I am,” some would proclaim. Or are you?

We all need to frequently peer into our life’s purse to be sure it is gold that we have mined, rather than fool’s gold, an essentially worthless mineral.

“Foul cankering rust the hidden treasure frets, but gold that’s put to use more gold begets.”

Beware of “shiny objects.” Appearances can be deceiving.

“All that glitters is not gold.”

Better Mullet than Dead!

It’s a little fuzzy. My head, that is. Not the word recall or short-term memory kind of fuzzy. That, thankfully, has all but resolved. No, I’m talking about my hair. It’s now gotten to that awkward place since half of it was shaved off for my brain surgery. It’s sticking straight up like a cheap shag rug. Like a baby orangutan. Do you get the picture? I know, it’s not a good look.

I have an honest-to-goodness cowlick!

At dinner the other night, I guess I hadn’t done a very good job managing my hair before sitting down at the table. Daughter Megan had an accepting but curious look on her face. Daughter Wendy almost immediately turned her face away from me, her hand rising to her mouth. Maybe a delicate burp? Nope! I could see her shoulders rhythmically rising and falling. She was laughing!

“Mom, Mom! From this side you look like you have a mullet!”

Oh, my gosh, she just broke my achy breaky heart!

Just kidding. I can still laugh at myself.

I recently saw my hair during the sports segment of the local news. I felt kind of famous! If you want my hair, tell your stylist you want “a full-on Mike Gundy.” I have a “half Mike Gundy.” And if you don’t live in Oklahoma, or you don’t know who Mike Gundy is, be sure to look him up. He’s Billy Ray Cyrus with an OSU visor.

I don’t have anyone’s support on this, but I’ve seriously considered shaving the other side of my head. I’ve asked my son-in-law if he wants to join me. His hair is cut with a razor and he says I’m likely a No. 9. Who knew? I’d rather be a 10 but a 9 isn’t too shabby!

So, I look like a college football head coach and I’m a 9. That’s okay. Even if I have a mullet of sorts, at least I didn’t die with a shaved head!

Oh, and did I mention I have a freaking cowlick??

#WhyIDidntReport: Speaking Truth to Power

It was the summer of 1972. We moved from a condo in a new city our family had lived in for a year to a house in a new neighborhood.

The summer started off busy with street football and hanging out. The new neighborhood was teeming with kids in an age range around mine. It was a refreshing change from the summer before when I had had an abundance of babysitting jobs but no friends.

I was 15 years old.

The guy who now lived next door to me was, shall we say, creepy. He barely spoke and had an unsettling stare. He was apparently the youngest son of older parents we seldom saw. A “late in life” kid, his brothers were already grown, married, and gone.

There was also one older guy in the neighborhood a few doors down. He was a recent high school graduate, living at home and working as a car mechanic at a nearby gas station. He was amused by the creepy guy’s antics and egged him on. And I’m sure the creepy guy obliged to please the older dude.

Hanging out with others on our street was very short-lived for me. I can’t remember how soon after we had moved in that it ended. Maybe only days, maybe a couple of weeks. But I remember why.

It was a night that a small group gathered in the older dude’s den to hang out and watch television. Everything was fine until someone inexplicably turned off the lights. I felt someone’s fist violently thrust between my legs. I screamed. The lights went back on, and the older dude and the creepy guy were laughing. I bolted and never went back.

It didn’t end there. But I don’t remember when it exactly started. Creepy guy attended the all-boys high school of my comparable all-girls high school. He rode a different school bus and, too often, his bus arrived at the same time or slightly ahead of mine. When it did, he sprinted from his bus to arrive at his house before I passed. His garage door was raised as he stood inside, eyes covered with his hand, pants dropped, exposing himself to me.

I had no choice but to walk by his garage to reach my house right next door. I knew to look straight ahead. Garage door up? Straight ahead. Straight ahead. Quick pace, house keys ready. Eyes straight ahead.

Scared to death it might escalate, I quickly locked myself in our unoccupied house and did not go back out.

It didn’t end until probably two years later when my father and uncle finally went after him. He had exposed himself to someone other than me on my sister’s wedding day. They never found him but it must have scared him because it stopped.

I had been traumatized once that night, and every day I stepped off my school bus, not knowing whether he had made it home before me, terrified whether his garage door would already be up.

I can’t explain why he was creepy, why he exposed himself, or why it was not handled sooner. I told. But I know I never said a word at the time to anyone about the incident in the den. I handled it. I changed. I hid.

But I can promise you, if this guy were nominated for a powerful position that is intended to represent and enforce the exceptional values of our nation, I would come forward. All these years later. Without a doubt. I would speak truth to power.

I am no longer 15 years old.

And I am no longer willing to hide. Or to look straight ahead and quicken my pace. It’s time to slow things down and speak our truths. And by doing so, maybe we will help someone else speak theirs. And then another. And another.

And then maybe we can have an honest conversation about ourselves.

Because there is just too much damn silence from the wrong people.

First Year Anniversary: Paper

It was a day like any other day that started off with promise and ended in tragedy. It’s been a year tonight since Ashley’s stroke. And I have still not sat down to have a good cry. Why? If I let myself collapse as far down as I need to go to reach the depth of the pain, I would be using valuable time digging myself back out of that very deep hole. That’s time I have not had and do not have.

This year has been sad. Really sad. It has been painful to watch Ashley trying to process what has happened to her body with no ability to share, to curse, to sign, to unload her depression.

It has been hard to push her in therapy, to reason with her, to find ways to motivate her to do what her body cannot yet do or does not want to do, encouraging her spirit to not give up on her broken dreams.

It has been physically exhausting: sleepless nights, interrupted rest, transfers, diapering, toileting, lifting, positioning, propping, percussing, feeding, bathing, dressing, pushing, pulling.

And it’s been emotionally exhausting. Writing on my phone since “day one” to help me cope, I look back to find words like “When Doctors Lie.” That is when it all comes rushing back. (There is a 2-year statute of limitations. Trust me. We are keenly aware.)

One year anniversaries are celebrated in paper: discharge summaries, medication and therapy prescriptions, emergency room charts, hospitalization records, medical negligence letters, accessible van bills of sale (yes, plural), dysphagia management instructions, feeding tube care instructions, DHS appeal documents, checks to our attorney, shower chair assembly instructions, wheelchair parts receipts, more wheelchair parts receipts, pool hydraulic lift operating manual, power chair brochures, and lots of Medicare and private insurance explanation of benefits statements.

But life goes on. With public bathrooms we cannot fit in. With parking lots violating the ADA without any van accessible spots. With ableism. And stares. And isolation.

Yes, life goes on. Save the tears for another day. We are down but we are not out.

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.