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?