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.

When Empathy Isn’t On the Menu

It was the caffeine I was after, even better delivered in a perfectly blended, ice-cold beverage. Bring on the ridicule for paying $5.15 for what is legitimately an overpriced drink. But “I don’t care a whit,” a more genteel way of saying, “Back off, Starbucks haters!” 

As soon as I ordered, and the word “Frappuccino” crossed my lips, I accepted the fact that consideration of fat grams and calories was out the window. But I ordered it with 2% milk anyway, as if that really made a difference. Sometimes being in a delusional state is a gift.

That day, my state was more accurately described as a stupor. Absolutely. A deep stupor.

The barista stuck his head through the window of the drive-through. He was a young African-American man with a big, welcoming smile. He quickly turned and looked back for my drink. I could see through the window that it wasn’t ready. 

Out popped his head again as he was about to strike up a conversation.

No, no. Please, don’t. Please don’t ask me…don’t…

“So, how’s your day?”

I was finally on my way home after spending the previous three consecutive weeks in the hospital fighting for my oldest daughter’s life. I had coverage with her and felt safe to run home and regroup. I had been struggling to mentally prioritize the enormous load of work I had to perform in just a few short hours before heading back to her bedside. And now all I wanted was a shot of caffeine while I was driving home to prevent me from falling asleep.

I had a split second to decide: Do I tell him? Do I tell him the honest truth? Or do I lie, like I have so many times before, by just saying, “Fine.” I’m a seasoned pro at “embellishing the truth” for the sake of others. Even when my life is crumbling around me, I have been conditioned to give people what they want to hear.

But today my day was so far from “fine.” And there was that overwhelming stupor. 

Out popped an honest answer: “Ohhhh, my daughter had a stroke three weeks ago. She’s still in the hospital.”

He looked back at me and never said a word. In fact, the expression on his face didn’t budge. Not a millimeter. I will never forget his face because that was all he had to give back. And his facial expression was still frozen with “So, how’s your day?”

I awkwardly chuckled and responded, “Ya, what can you say?”

He handed me my drink and I drove away. I immediately began thinking about how I might respond if I received the occasional email survey asking the same standard questions about my recent visit:

“The employee made an effort to get to know me.”

I knew I would answer, “Strongly agree.” 

That stupor. And embellishing the truth. 

What’s the point of being honest? 

But next time I’ll roll up my window and pretend not to see the barista until they’re about to tap on my window with my drink in hand. 

I’m a pro at pretending.

I was back at the hospital a few hours later, pretending that everything would be okay.

CAUTION. You Are Now Entering the Hospital.

To be perfectly blunt, hospitals can be scary, scary places, where mistakes can be made that cause patients to become sicker, prolong their stay, and increase their medical bills. And at worst? Hospitals can kill.

My daughter’s most recent hospitalization has been no exception.  And I’ve found myself a hair-trigger from a primal scream more times than I want to admit. But the tears and primal scream will have to wait for another day. Now is the time to walk that thin, fragile line between advocating for appropriate care and holding folks accountable. And while I have a lot of experience at this thing called “advocacy,” I am capable of losing my balance (and my cool).

Just one department – respiratory therapy – has been enough to absolutely take my breath away. (Yep, that was deliberate. A piece of advice during a crisis: Do your best to find and maintain a sense of humor.) Having had multiple respiratory therapists treating her, one could be lead to believe there is a direct correlation between prolonged exposure to bronchodilators and diminished bedside manner. There is clearly something up with a number of these folks.

And inhalation of steroids may have somehow rendered respiratory therapists completely incapable of performing chest physiotherapy treatment (CPT), a technique to clear a patient’s lungs. Whether performed mechanically or physically, I have heard more excuses for all the reasons they cannot do it. 

Not withstanding the benefit to the patient – partially paralyzed from a stroke, bedridden, and battling early pneumonia – I heard excuse after excuse. “It causes carpal tunnel” (And so can keyboarding, but it is an expectation of the job and not the least bit of concern to the patient.) “I walked a half mile each way and couldn’t find a percussor.” (And I’m sure it was all uphill.) “Percussors walk out of the hospital.” (Those pesky percussors are not only capable of growing legs but are to be blamed for inadequate equipment inventory. Who knew?) “Percussors end up in isolation rooms and we can’t find them.” (There they go again, now playing hide and seek.) “95% of patients can use a flutter valve.” (I asked about the other 5% that includes my daughter with disabilities. Guess it’s SOL for her and patients like her who can’t use one.) “I didn’t see it on her chart so I can’t perform it.” “The doctor didn’t order it.” (Wrong and wrong.)

I was told by one respiratory therapist, “For patients like this (ohhh, bring it on, baby), I rely on the family to tell me what they need.” Uh, SHE NEEDS CPT! “Oh, I can’t do that. I have a shoulder injury.” So, who did her manual CPT? Me, of course, while the respiratory therapist watched. (He said I performed it well. Thanks. And I guess we’ll be getting a hospital discount? A “participation trophy” at discharge would be a nice touch.)

And that was after the respiratory therapist handed my daughter the breathing treatment, stepped to the end of her bed, and began watching the Rachel Maddow Show. Unsolicited, he began sharing his conservative political views about Puerto Rico. (Did I look “conservative”? Or the least bit curious about his political views?) I’ll be watching for an additional hospital discount for inattentiveness, or for being forced to listen to his lack of compassion during a humanitarian crisis. 

Never mind one respiratory therapist telling me that “it’s lucky that patients like her don’t know what’s going on.” Not only was he wrong that he should not be bothered with performing CPT, but he was also wrong that she doesn’t understand. Upping the ante in offensive remarks, I was told that in his day, “Patients like her were sent to the Hospital for the Incurables.” Are you kidding me? Did he just say what I think he said to the mother of a human being he is calling an “incurable”? His disability may be learned rather than congenital, but he has acquired a raging case of ableism!

One respiratory therapist must have thought I was the equivalent of a hospital priest and my daughter’s room a confessional. “This might be illegal but I “stack patients” by putting masks on multiple patients at the same time who are on the same floor.” He’s lucky we’re not paid actresses playing mother and daughter investigating Medicare fraud, or a hospital equivalent of a Secret Shopper. I hope his soul now feels at peace for getting that off his chest while my stomach has just been turned.

This is just one department. And it’s only a fraction of this entire experience. Unfortunately, it’s much bigger than this. It’s not just about the poor performance of a single department. It is about trust. It is about the patient (and their caregivers) being heard. It is about trusting that the national standard of care is met. It is about trusting that a patient’s health can and will be protected by a medical institution. 

And that this is happening in the presence of caregivers and families, and a physician’s family to boot? I dread to think what else is going on for which the public is completely unaware. 

Yes, indeed. Hospitals are scary, scary places. Stay alert, folks. Your life and health depend on it.