An Anniversary and A Random Act of Kindness

I always strike up conversations with checkout people, especially at Trader Joe’s. (Trader Joe’s seems to have the coolest and most approachable employees.)

The conversation yesterday covered a lot of territory in short order: what I was stocking up on, to baking dog biscuits, to why we bake, to Ashley and being asked about her disabilities (when I say even a sanitized and abbreviated version of her story, I know it must sound daunting), to the one-year anniversary of my brain surgery. Today!

The woman then said, “Wait right here. We’ve got to celebrate with flowers!” She took off, ran back with this beautiful bouquet, and put them in my cart.

So kind. I also got a sweet hug.

I thanked her profusely and then ran my hand through my hair, proclaiming, “See? I have hair again!”

Random acts of kindness are the best. Giving AND receiving.

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12 Insights In 12 Months Post Brain Surgery

Just a couple of days away from a year since my craniotomy for a subdural hematoma, I can’t help but reflect on the experience. I’m the first to admit that I’ve had my share of challenges during my life—this is just one of them—but I do my level best to neither wallow in nor relive them.

But finding semi-amusing, marginally insightful thoughts and lessons learned? I’m all for that! So here are “12 Insights In 12 Months Post Brain Surgery”:

    • There are no medals awarded for poor self-care, but there are plenty of pine boxes.
    • Relationships between brain-injured patients and ICU nurses are novel since “most of our patients are in a coma.” Well, then, “VERY nice to meet you!”
    • Brain surgeons see humor in their craniotomy jokes.
    • Patients might not immediately see the humor in craniotomy jokes.
    • Hair grows back. So does a sense of humor.
    • Burr holes and titanium covers leave the perfect divot in the skull for a novel drinking game called “Craniotomy Shots.” (No, I haven’t tried it, but I can at least finally laugh a little at the dents in my head.)
    • Idioms like “get it into my head” or “off the top of my head” take on a whole new meaning post brain surgery.
    • The idiom “I need that like a hole in the head” can be true. Literally!
    • Being recognized by an ER doc can be the sign of a bad year.
    • Impressing an ER doc that you are still among the living is indicative of a VERY good year!
    • It is both surreal and wonderful to say to someone, “Thank you for saving my life.”
    • And finally, IT’S GREAT TO BE ALIVE. I’m still doing my level best not to squander a day of it.

Out of the Bunker

Encouraged by my daughter to join her at a coffee shop, I wrapped up my responsibilities at home and headed out for some much needed down time and brain clearing. We try to encourage each other’s writing endeavors—mine more sparse than hers—so I figured I’d give a new environment a shot.

She didn’t remember that it was the one-year anniversary of our little two-day jaunt to Eureka Springs, Arkansas for some writing and relaxing. (That was the trip when she recommended I “write something pithy”!) Had it not been for a Memories reminder from Facebook, I would have forgotten as well. My subdural hematoma likely foreshadowed on that trip by an episode of double vision, I now have my brain surgery as a convenient excuse for a faulty memory.

Tonight, after nearly two weeks of severe storms, and a tornado that decided to make a path over our house, I was starting off rather spent. But I knew I could get the necessary infusion of caffeine at a coffee shop, preferably landing me somewhere between “alert” and “jittery.”

She recommended a honey brown sugar latte. Ordering hers first, I grabbed a spoon and made my way back to the table for a taste test. “Yummy!” It wasn’t quite a substitute for dessert but all the same on the sweet side. I headed back to the counter to order one for myself.

Fumbling with my charge card, its chip, and the little white box to pay, I wasn’t quite sure whether to insert my card somewhere or place it on the surface of the box.  Yes, I looked a bit awkward, likely providing a chuckle to the twenty-something year-old barista.

I was feeling a bit like Kimmy Schmidt coming out of the underground bunker. I haven’t been out much for many, many months. Businesses and restaurants have gone and come while I’ve been “to ground.” New technology has been introduced. And shows like “The Big Bang Theory” and “Game of Thrones” have wrapped before I’ve seen a single episode. (Life apparently moves quickly above ground!) For the Kimmys of the world, I guess there’s always Netflix.

Music played overhead and a piece of white plastic peeked out from underneath my daughter’s red hair. I was wrapped in a sensory time warp. The newest Apple AirPod was protruding from my daughter’s ear while The Beatles’ Revolver album (“I owned that album!”) played overhead.

I’m in awe how Gen Y/Millennials can literally filter the noise of the world, all the while staying connected to their Facebook newsfeed, Instagram social stories, and an alternative track from their iPhone.

“Wanna hear my new favorite music?”

“Sure!” I said.

She handed me an AirPod, directing me to place it in my right ear. (There’s a left and a right?) I’m sure I had that “what do I do with this?” look on my face.

She began telling me the artist’s name.“It’s…” I had resorted to lip reading, distracted by the alternative music in my right ear and “Good Day Sunshine” taking over my brain in my left.

“Far Ass?” (I likely said it a little louder than she was expecting. In fact, I said it a bit louder than I was expecting, now seemingly shouting over “Yellow Submarine”!)

“Hold on. I’ll text it to you.”

“Far Caspian,” came across my phone. I have no idea how I got “Far Ass.” (Clearly, I’m a mole coming to the surface, overwhelmed by the light.)

“Nice!” I said, referring to her choice of music but likely too loud again. (Geez, why am I shouting?)

“‘We all live in a yellow submarine?'”she said.  “Who wouldn’t have assumed you were high with lyrics like that!” (Yes, she makes me laugh.)

I quipped back, “Did you know you can feel the beat of the music as a pulse in your ear?” She shot me a curious but sweet “Mom, have you been living under a rock?” expression. (Yes, Kimmy, you have been in the bunker for far, far too long.)

The barista appeared at our table. “It’s five minutes ‘til closing.”

Wrapping the evening up with caffeine jitters and a literal beat in my ear, I have a new appreciation for the sensory overload that is a Gen Y/Millennial.

Time to go home, Kimmy, and climb back in the bunker! I’ll emerge again another day.

Thanks for the invite, daughter! It was fun!

Tie a Knot

The waiting area was dotted with people, mostly of the AARP variety. Tech-savvy seniors with smartphones had likely checked in electronically using a provided QR code and the kiosk before taking a seat. Or, for those with flip phones, and others preferring the personal touch, there was always the option of standing in line for the old-fashioned, face-to-face human interaction: an employee behind the receptionist desk.

Some folks waited with their noses pressed in books, others thumbed through magazines or engaged in quiet conversation. But all were waiting for their “spirit guide” to appear from behind a series of doors to declare their turn for the world-class medical care Mayo Clinic is known for.

And then there was Ashley.

Whenever she’s waiting for an appointment, we typically move away to a less populated hall where I keep her moving, pushing her wheelchair as I pace. The movement often soothes her, maybe leading her to believe I am in the process of aiding her escape. But this time, she knew the elevators took her one step closer to home, and she also knew I wasn’t headed that way.

She was not happy. At all.

It’s gotten worse since her stroke, her outbursts and protestations. She’s not the same. Her body is not the same. Often in pain, life is less joyful than it once was. I get it. The last place she wants to be is anywhere but home. And “home” is something she can still say, each phoneme perfectly articulated.

“Ashley, inside voice,” I whispered.

She wasn’t having it.

My eyes darted to the few people in the hall, quietly sitting at the windows, fourteen floors up, overlooking the Plummer Building. There were no glares or scowls, providing me some solace. I knew I was doing all I could. Maybe they recognized that, too. And maybe they had enough years of life behind them to know that everything wasn’t always wrapped in neat, predictable packages.

But in the meantime, nothing I did appeased her. I was mortified, and yet I wasn’t. Ashley had a right to be here, too. “Flight” wanted to kick in, but “fight” overcame it, as I told myself, “Tie a knot. We’ll get through this.”

My husband Hal had taken the role of “lookout” with all the quiet people. If I didn’t hear Ashley’s name called – and that was likely over her yelling – he could text as I had my phone on vibrate in my back pocket.

About that time, as I was looking for somewhere else to take her, I saw the sign for the family/wheelchair accessible bathroom. I pushed her wheelchair through the door to find an expansive space, including an adult-sized changing table and a bench. (Yes, Mayo seems to think of everything.)

I set up her iPad on the bench, tapped into the Mayo Clinic Guest WiFi, and pulled up YouTube. Now it was just a matter of time, waiting for her name to be called.

We were into an episode of Hannah Montana when I heard it. I had barely wheeled her around and hit the automatic door button when my phone went off with a text from my husband.

“Time.”

We caught up with him as our “spirit guide” escorted us to a changing room where we were passed off to another individual who provided instructions: “Everything off from the waist down but underwear. Shoes off. We have socks.”

But I planned ahead, packing clothes and dressing her for a possible reprieve. (Yes, I’ve done this a time or two.)

“She has leggings. No snaps. No zippers. No metal. Are you okay with her staying dressed? We’re happy to pull her shoes off in the room.”

“Oh, that’s fine!”

One crisis averted.

An X-ray tech appeared from behind a door. I began to size her up and immediately proclaimed, “We’re here to help, but we’ll likely need another set of hands.”

Another young tech appeared who wasn’t much bigger than the first. I was inclined to ask, “How much do you bench press?” But I decided it was likely best not to tip my hand quite yet.

I’d hoped for an opportunity to stay out of the room due to the amount of X-rays I had been exposed to in the last 9 months, what with multiple CT scans because of my subdural hematoma and subsequent brain surgery. But it wasn’t happening with these young techs. So Dad and I both put on lead coats to stay. Mine had a guard for my thyroid so I used it.

Hal and I lifted her onto the table. He took his place at the head of the table while I managed hips and legs, and the tech was responsible for the position of her feet. Although we talked Ashley through it, she was not cooperative, requiring us to try to hold her still.

“You’re doing great, Ashley. We’re almost done. You’re doing great.”

When we were finally wrapping up the third view, the X-ray tech turned to me and said, “You’re strong!”

She was right. I am! She likely didn’t initially recognize that I’ve “bench pressed” quite a lot in the past 34 years.

Although my hope was to nail every view the first time, we only had to take one view twice. It was definitely a relief to have that behind us.

And then as Hal and I were carefully helping Ashley off the table and into her wheelchair, she went for it: a fistful of hair on the back of my head, right at the neckline. She hadn’t done that since the first few months following her stroke. It didn’t matter that we were doing what was in her best interest. She was furious. I respected that. But I was now in a painful predicament.

Dad panicked, pulling on her hand to release. But each time he pulled, her grip became tighter and she pulled even harder. “Stop,” I said, sounding ridiculously calm, wanting the techs to believe I had things under control. Needless to say, I didn’t.

My mind racing for a solution, I finally remembered a technique her physical therapist had recently taught me when the tone from her stroke kicked in. I carefully squeezed the outside of her hand on one side and her thumb on the other. She finally released, but it wasn’t immediate, leaving me to imagine a sizable bald spot as the encore.

By now, Hal and I were both sweating, and Ashley was again fussing. We quickly exited as I made a beeline for the bathroom, and Dad returned to his lookout post for the appointment with the orthopedic surgeon.

As I was almost to the bathroom door, a nurse appeared from around a corner and politely asked if everything was okay. Surely it didn’t sound “okay,” but I answered “yes” anyway.

Okay, so I lied. It wasn’t “okay.” But being truthful would have served no purpose.

“No, it’s not okay! We just had X-rays. It was awful! Now we’re waiting to see her orthopedic surgeon. She had a stroke 18 months ago, then a seizure 2 weeks ago. The day before she was finally walking again using a walker. Now she can’t walk. We drove two days for only 2 hours in the clinic. They gave away our hotel room with the roll-in shower the first night. We stayed for free but we couldn’t bathe her until we got to Rochester. I’m exhausted. She’s scared. And we have a toilet in our van! Does my hair look okay?”

Nah.

I did my best to smile. “We’re fine. Thank you. This is about as good as it gets in doctor’s offices.”

“We could call for puppets,” she said.

Puppets?

“Oh, no, thank you.”

Although a lovely idea, I seriously doubted Ashley would have found them the least bit amusing. In fact, I envisioned her throwing a puppet AND the puppeteer! (She can muster superhuman strength at times like these.)

And then, before she walked away, the nurse said the kindest thing: “Don’t hesitate to ask for help. We’re in this with you.”

We’re in this with you? Seriously? Could she have said anything more supportive?

I was stunned for a moment before my attention returned to Ashley.

Thankfully, she was quickly called for the appointment with her orthopedist and, as if a miracle, she pulled it together. Likely taken by her surgeon and resident’s good looks, she was her sweet, smart self. (She is definitely on her best behavior for attractive men!)

Her surgeon shared the results of her X-rays. “Although we don’t perform surgery solely on X-rays, hers show a hip no one would want to walk on.” He offered a “simple injection in her hip” to prove whether her inability to walk was from the severe arthritis. The memories of her X-rays fresh in our minds, Hal and I both flashed a wide-eyed look at one another. I couldn’t read his mind but I could have guessed what he was thinking. A mind-meld moment, my anesthesiologist husband finally said what I was thinking: “Under general anesthesia?”

“No, this is a simple injection.”

Without having to out Ashley and rehash the whole X-ray experience, my husband politely took the lead: “No, that’s unlikely to happen. For everyone’s sake, we’ll have to pass on the injection.”

Thank you, husband. I finally had hair again after my brain surgery and I was relieved to be able to keep it!

And so, we had our answer. We were prepared twenty years ago, after her first hip surgery by this same surgeon, for the possibility of a future total hip replacement. It was now that or a wheelchair for the rest of her life. The surgeon left us encouraged that she would do quite well with this much less complicated next surgery.

When we returned home, we received an e-mail of a new note to be read through Ashley’s patient portal. The surgeon’s transcribed dictation began, “Delightful young woman…” Based on Ashley’s X-ray experience, Hal and I had a good chuckle. But based on Ashley’s composure with her surgeon, it was spot on and lovely.

I recognize that the word “delightful” can be canned “doctor speak.” But he could have as easily begun with “34 yo female with Down syndrome.” Or, worse yet, “34 yo Down syndrome female.” (Recognizing someone as a person first rather than a diagnosis is always preferable and always appreciated. Yes, we notice.)

And the realist in me recognizes that “we’re in this together” was likely script from a Mayo Clinic institutional training.

But what made those words feel so special? Why, after such a rough experience, had I even remembered them, or cared to commit them to paper?

It’s because it was the first time I had ever heard them uttered outside my marriage.

In all my years, all thirty-four years of caring for Ashley, and all twenty-five years of traveling to Mayo, I had never heard them before. My gracious, if I could have only heard those words spoken from a public school administrator. Or a classroom teacher. Or a neighbor. Or, what about the doctors in the ER following her stroke, when no one would do anything for her and no one would listen to me?

My world has been precariously tilted on its axis, and in a sustained state of crisis, for quite some time. And I expect no one to step in and save us. But those few words allowed me to catch my breath, if only for a brief moment, to regroup and push through. It felt like someone had thrown me a lifeline. And sometimes that’s all anyone is looking for: a few kind and supportive words.

My father often quoted Franklin D. Roosevelt: “When you reach the end of your rope, tie a knot in it and hang on.”

In tough times, he’d simply say, “Kimbo, tie a knot and hang on.”

My rope has quite a lot of knots in it but, yes, Dad, I’ve caught my breath and I’ve already tied another one.

One Down, Two to Go

Ever since Ashley’s stroke 18 months ago, I have dreaded the day when medical insurance could potentially refuse to cover her outpatient therapies, either due to lack of progress or arbitrary cutoffs. In fact, during her inpatient rehab I was keenly aware that on any given day we could be abruptly discharged for the same reasons. That unnecessarily added to what was already enormously stressful.

In both instances, I pulled out all the stops to prolong that outcome, executing many things I had learned over Ashley’s lifetime. Due to the poor quality of the food during her inpatient rehab stay, I even prepared nutritious organic recipes for her that she could manage with her dysphagia.

During the weeks of home health therapy, and during the months of outpatient therapy, I worked with her throughout the day. I listened carefully to the therapists’ instructions and suggestions, replacing my mother’s inclination to save her with proper support and encouragement to create opportunities for her to improve.

Therapy is not 45 minutes X times a week. No, to truly benefit from therapy, it must be incorporated throughout the course of the day. Life’s daily activities become therapy: transfers to and from the toilet, transfers in and out of bed, transfers in and out of the car, repositioning, bathing, dressing, eating, baking, and playing games. It is a shift in mindset as all are performed with the purpose of rehabilitation.

We were wrapping up a therapy session on Thursday when the news finally came. Ashley’s PTA informed me that her Medicare recertification for physical therapy was upon us and he could no longer justify physical therapy. Because? “She is doing so well!”

Unexpectedly, I started to cry. It’s been eighteen months since her stroke and I can barely wrap my brain around what we have endured to reach this point in her recovery.

Ashley turned a monumental corner just 3 weeks ago when we offered her the use of a walker again. Months before, she was not ready and refused to try. This time she was more receptive. She struggled with her first few steps using it but has slowly gained confidence and taken off.

I must admit, it is hard to think of losing the support of her physical therapist who has walked this journey with us twice a week for the last 12 months. But fortunately, and unfortunately, we have worked ourselves out of his services. And now, with no formal education in any applicable fields, it once again falls to me. After all these years, I guess I should be used to that, but it still feels daunting.

Rest assured, had the hard cap for Medicare rehab therapy not been repealed in 2018, I fear we would not have had this same outcome. In fact, had Ashley’s PT and PTA not believed in her, and fought for her continued therapy (even within their own ranks), I doubt she would have come this far.

Instead, her PTA pronounced, “She’s back!”

He’s right and, unfortunately, he’s also wrong. From the standpoint of medical justification to treat, she is now using a walker with standby assist. And she has exceeded expectations when the stroke left her in a Hoyer lift 18 months ago.

But Ashley, as we knew her, is not back. Unfortunately, she never will be. She is now a different version of her former self.

And with or without formal physical therapy, “therapy” must continue, likely for the rest of her life.

From all appearances, her progress may appear “as predicted.” Oh, if you only knew. Nothing in life is a given, and no one receives a guarantee of anything, especially following a diagnosis of “stroke.” Therapy and hard work improve chances of recovery, but that may not even be enough.

But her progress is a testament to the tenacity of family, therapists, and most importantly Ashley. Failure would have been inevitable in the absence of perseverance. That is the one thing that, without a doubt, can be guaranteed.

Occupational and speech therapy will continue until Ashley’s skills exceed their services or her progress ceases. So, for now, it’s one down and two to go.

Brass Knuckles, an Actuarial Table, and a Social Construct

I’ve never wholly embraced the idea that I would live into my nineties, or even my eighties like the majority of my ancestors. I’m optimistic by nature, overcoming great struggles for the benefit of others. But for myself? I am more a realist and recognize I am not long on luck.

Until recently, my health had been relatively solid, a fact that I was rather proud of. To healthcare professionals, I often referred to myself as “medically boring.” And I was always promptly reminded, “That’s a good thing!”

With each birthday, I have done the math based on “best case scenario,” calculating how long I have lived and how much time I might have left. In a sense, I have served as my own actuary. I’d always been hopeful for a long life but also well-aware that a future was not guaranteed, even with genetically-enhanced longevity.

I’d read articles about stress and its effects on health, specifically chronic stress and “caregivers syndrome,” and recognized my health was likely compromised. “Burning the candle at both ends” would be an understatement. It was more like both ends and smack dab in the middle.

Unlike blood pressure measured in millimeters of mercury, or a glucometer to measure sugar levels, there is no “stress-o-meter” to give an accurate measurement of daily travails. Oh, sure, the stress hormone cortisol can be measured, but that’s a transient value and doesn’t represent the wear and tear on the body. Now with an available over-the-counter kit to determine the remaining length of my telomeres, I say “pass,” politely of course. There is no “anti-stress” pill to address or repair them, and a significant lifestyle change is not in the offing, so why bother?

I’ve been hopeful that the demands on my life might ease up to the point that I would still have the opportunity to do some of the things I have dreamed of: travel, write, read, take a pottery class, even spontaneously decide to walk the dog, all with a much-needed, and long overdue, touch of frivolity.

But my life has been filled with a unique charge. Caregiving for a daughter with multiple disabilities is now into its fourth decade. And, yes, it is very demanding. Having raised three daughters in all, I can recognize that there are exceptional and unusual challenges. But there is also a lovely “sameness” to it, a matter of parenting one more of my amazing children.

I, more often than not, hesitate to share much about the struggles for fear of being misunderstood. If you’re a member of the club, you already know the secret handshake, simply by virtue of the fact that you are a parent of a child with disabilities or chronic illness. But for the rest of you? You don’t understand. Trust me. You can’t.

To be honest, to offer a mention of a “fourth decade” even feels risky for fear of being misunderstood. Could it be misconstrued that I somehow have not wanted to make that milestone and the ones to follow? If that’s the conclusion jumped to, one would be horribly mistaken. For there not to be a “fourth decade,” my daughter would have predeceased me. No parent can bear that. No parent.

But am I worried that she might outlive me? You bet I am, every day of my life, for more reasons than non-club members could fathom.

Equally risky and exhausting, there is also a downside to not being forthright. Desperate for our lives to look like what others call “normal,” we labor to make it look easy, slapping smiles on our faces, knowing full well that being candid would likely drive the few remaining folks away.

But it has never been a pity party at my house either. I’ve been too busy grubbing to create a path for change. My life not complicated enough, I predictably morphed into a disability rights advocate. (But then aren’t most parents of kids with disabilities “disability rights advocates” in one form or another?) We identify with the soccer mom, except on steroids, donning a cape, and wearing brass knuckles and too often the same clothes we wore the day before.

It hasn’t been easy. I’ve not only fought my own battles but often everybody else’s, too. It is not something I look back on fondly. While proud of what I was able to accomplish (and accepting of the fact that I would be compelled to do it again), I now recognize the cost was likely way too high.

In the special education arena alone, I was fighting serious stuff from educational segregation and discrimination to accessibility, issues that few know about and most take for granted. I toiled away, evidence organized in tidy piles lining the walls of the master bedroom. All too familiar with the discriminatory structure that society created, I teased out strategies to overcome it: access to the school building, access to the classroom, access to the curriculum, access to technology, access to an education, access even to the playground. There were multi-year battles, lawsuits, investigations. This was my “normal” few even knew about but many benefitted from.

This didn’t stem from some twisted need of mine to be needed or, like a Chinese acrobat, to impress others by the number of plates I could simultaneously spin. No, I recognized that others were in pain over the mistreatment of their children – the children who could not speak or advocate for themselves – and I could absolutely relate because I was suffering and in pain, too.

In part, maybe I was hopeful I could collect a group of likeminded individuals who would fight along with me, create an army of advocates of sorts. Wrong. I only got pushed to the front. And when I looked back? Rather than being shoulder-to-shoulder or back-to-back with anyone, they were gone, but for a choice few (and I do mean few). Instead, I was surrounded by a multitude of “benefactors,” along with a slew of disinterested and apathetic individuals.

Maybe I just wanted a piece of what others around me had, those without a child with “special needs”: a sense of community, a sense of belonging to a bigger group called “society” rather than one identified by acronyms for a diagnosis or disability: DS, CP, VI, ASD, DD, ADD/ADHD, ED.

It seemed so simple, so just.

But “simplicity” wasn’t simple. And justice was a mirage.

Over many years of wear and tear, I began to feel the very fabric of my being deteriorating, thread after thread individually yanked, leaving weak spots and, in some instances, holes. My reserve was waning, and I knew it. But the demands were unrelenting.

With very little left for myself, I finally recognized that I wasn’t living my “authentic life.” “Systems advocacy” – replicable change – was digging furiously in sand: Turn your back in one direction only for it to collapse in another. It was stifling and I was slowly being suffocated.

Creating, something, anything, was the only thing that sustained me: authoring a book, writing an article, designing software or specialized fonts, preparing a workshop or presentation. Solving problems. Designing solutions. That is what kept me going.

But there came a tragic point when circumstances made even that all but impossible. As if a bystander of my own life, I watched as the riptide washed me out to sea. And, this time, I could not find my way back.

It was the toxic exposure at the high school that did it, that made one daughter deathly ill and left another with a chronic illness. Then there was the seven-year-long lawsuit that followed, my brain serving as a virtual Rolodex of information maintaining the story and the evidence. Two trips to Washington, DC came next, first to speak, second to participate in trying to effect change. But that was another one of those awful “digging in sand” experiences.

And then our oldest daughter had a stroke on September 8, 2017. It was not just a run-of-the-mill stroke but a devastating one, the paralysis/feeding tube/wheelchair/inpatient rehab kind of stroke. I had been down a similar path with her almost thirty years before. And here we were again, facing a horrible, gut-wrenching ordeal with a likely challenged outcome.

I was tested as even minimally adequate medical care was not provided for “my community,” the “diagnosed,” the “acronyms.” I was smart enough and, after all these years, well-seasoned enough to know to immediately request her medical record. I knew what I was looking for: It would be similar to what had previously lined the master bedroom walls, decades earlier.

And there it was. It wasn’t just a “feeling” of ableism or discrimination. It was there, in her chart in black and white. And, as a result, the medical community had nearly killed her…again.

It was completely and utterly devastating, trust-shattering for the umpteenth time.

And then one night, a few months later, I went to bed with an excruciating, unrelenting headache. Nauseated and in pain, I stayed in bed the entire next day. Knowing I could not remain bedridden, I finally got up, pushing through an entire week without medical attention or a diagnosis, all the while living with a subdural hematoma, a dangerous bleed on my brain.

The one thing I recognized was that the pain was extraordinary. What I did not recognize was that the inability to respond to my own pain might kill me.

It scares me to think what I endured, that it was necessary for me to be superhuman: Soccer mom on steroids, donning the cape and brass knuckles with a trash can by her bedside.

It still scares me.

Now I was facing brain surgery, recognizing the possibility of potentially catastrophic complications, simultaneously coming to terms with the fact that the actuarial table with my name on it may have finally run out.

I was staring down my own mortality.

But I had trained myself well. Alert and in intensive care, I appeared calm and resolute. I’m told I made it look “okay,” easy, just as I felt it necessary for all these years with my daughter, protecting everyone but myself.

There is no explanation for why I had a brain bleed. No trauma. No risk factors. Nothing. That scares me, too. Without recognizing and identifying a cause, how can I create a different outcome?

Or was there an explanation? Could sustained or acute stress, a spike in blood pressure, have been the culprit? The truth is, I don’t know, but that possibility has been neither ruled out nor discounted.

On the first brain MRI, an older spot “lit up” on the other hemisphere. That spot has remained unchanged on a more recent MRI and is thought to have also been caused by a brain bleed.

I now remember that headache, that excruciating thunder clap headache, following my presentation in Washington, DC. I remember the moment when the executive director of a national nursing association walked up to speak with me the day after my presentation. She was the only person to ask, “How are your girls now?” Overwhelmed that someone cared, I answered, “Not well.” That was the moment. I remember grabbing the top of my head while talking with her, questioning whether I should walk away to dial 911. But I remained composed and didn’t ask for help then either.

Now with the subdural hematoma and subsequent craniotomy, I ran all the years through my mind as I thought I might die: what I had stood for, what I had fought for, and what I had endured. I couldn’t help but think of what I could have done with my life under different circumstances and the things I could have become.

But those missed opportunities were not due to the circumstance of my child’s disability. No, I finally got it. They were due to the disability of our society.

I have always struggled to understand why society has unnecessarily made our existence so difficult, deliberately constructing walls that I and others have had to climb over and, in some instances, tear down. Politicians and the public can pat themselves on the back, passing sham laws deliberately designed with no intent for legitimate and sustained enforcement. Or in the case of toxins in schools, they pass no laws at all.

Like I said before, justice was a mirage.

But it didn’t matter anymore as I was fighting for my life. And I still am. I have finally accepted the fact that I am not immortal, that the cape and the brass knuckles must come off or my daughter will most assuredly outlive me.

And, after all these years, I know one thing with absolute certainty: In my absence, our disabled society will neither properly care for nor assure my child’s safety.

That is sobering.

Am I convinced that this social construct is not by oversight but by design? You bet I am.

I wish I understood why we actively and passively participate in a society, all of us, that screams “right to birth” and yet ignores “right to life”: my daughter’s, mine, my family’s, and countless others.

To my dying breath, I will not understand. I can’t. I won’t.

Can you?

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.