Up Close and Personal with a Disability

I've spent 10 years as a disability insurance specialist, helping people find plans to protect themselves financially against the strain of a disabling illness. So, I'm no stranger to the thought of disability, to disability statistics, or even the language of disability. But nothing can prepare you for the emotional duress of a disability event. This is where community and research are so vastly important.

Disability is personal; oftentimes quiet, sheltered, unassuming. A proud and boisterous social butterfly can quickly reverse-metamorphose back into a protective cocoon. At first it can feel temporary. "Just until I get a handle on this.” “It’s acute after all.” “I have this condition but there’s a road-map forward.” But after weeks, months, years, it’s starting to look like life is not answering your questions the way you thought it would. Mental health begins to atrophy and voices you haven’t heard in years begin to float up from your deep subconscious, breaching the tensile surface between your positivity barrier and into your daily aphorisms.“One step at a time,” “You got this,” and “Tomorrow,” are subverted by “What’s the point,” “It’s not worth it,” and “Never.”

Most loved ones close their mind to this negativity. “We’ve got to stay positive.” “Keep battling.” “Not with that attitude.” Their words might be meant to fight an encroaching fear about the prospects of their own future, maybe one without you. It’s evident that they are attempting to re-tune their own psychological interference and, as the noise dissipates, it’s clear that this need to stay upbeat stems from their association with you and your experience, begging the question, “Am I bringing them to this sadness?”

This thought gets you down even further. Instinctively, you know your path, your survival, your grace, depend on facing the truth and that requires meeting every possibility head-on; even the worst. But some are too scary so you just glance and it thrusts you back behind the curtain. You are their rock. But your fear melts into their fear and Fear doesn’t add or multiply but exponentiates because you know they can’t handle crossing that ocean without you. Hell, they wouldn’t even be here without you.

And so you see their tactics, their strategy to keep it all bottled up in a cage instead of taking a seat at the table. Now it’s a game. You’re on edge. Your spouse withdraws. Your kids lash out. Your grand kids are none the wiser. Will they even know me? Not the way I want to be known. Maybe not at all. You know the animosity stems from this illness, from this cruel challenge, but no one wants to come clean about how they’re feeling. Suddenly everyone is studying their own reflection, their backs to one another as they all face the subject of mortality, theirs and yours, but not looking to you, not seeking your thoughts because of what they’re afraid to hear. So everyone’s emotions run amok, no one able to lasso their emotions into submission, no one able to sit them down, to help them take a deep breath and say, “Exactly what is going on here?” No one even knows how to tie the rope.

This is the reality of disability. This is the face of disability that no one wants to dive into. It can start with chronic pain from a lingering back issue, from a cancer that will not quit, or a neurogenerative disorder like MS, Parkinson’s, or ALS, where the uncertainty of every day can feel like too much to take on. Or it can be like my mom’s case: Interstitial lung disease.

“Interstitial lung disease” literally means nothing. And everything. My mom is down to 30% lung capacity. Her lungs are dying and no medical professional can tell us how, why, or what to do from here outside of a lung transplant. It’s been a somewhat repetitive series of despair, confusion, hope, and resignation. Each one of those four compounds laced together like the nucleic acid sequence that permeates every interaction, petulantly adding to the compound like DCHRHDCHRHDCRDRCCCRDHHRDCDDCCHDDRRRR.

And through this, what’s clearer to me than ever before, is just how little we know about the human body. Especially our lungs. Every amateur physician has the same first question: “Did she smoke?” “Yes,” I explain, “but she quit after September 11th because, and I quote, ‘I didn’t want to be looking for a cigarette if the world was going to hell in a hand basket.’” This conversation, futile from a clinical perspective, at least allows the space to think back to that time and honor the mental fortitude and sacrifice that it truly takes to beat a smoking addiction; her determination--perhaps stubbornness--but mostly her toughness.

I never told her but one evening in the fall of 2001, I saw her run up the steps to the hill behind our house as she worked through a fit of cravings. She was hunched over, bowed at the waist, silently bawling to herself as I stared out the window, watching. From her bent position, she suddenly jerked upright and leaned all the way back with her hands on her hips, tears welled in her eyes as she fixed them to the clouds and she sucked in that pure Indian summer air with glaring disdain. Disdain that the air was not flavored like a smoldering leaf? Disdain with the lack of the active ingredient fueling the addiction? Disdain of the social and commercial pressures that led her to this lonely suffering? Regardless, the irony is searing. If she could breathe like that today it would initiate a flood of gratitude.

Why am I writing this? Not that I need anyone’s permission, but it’s primarily for me. And I’ll share it with my mom too. We’ll probably cry it out. We’re getting better at that.

Why share it? I thought it might be a breath of fresh air (sorry) for some folks to have a better understanding of what disability really looks like, of what lung disease really looks like. Or to validate the disabilities they’ve experienced. Or to really illustrate the fact that disability can happen to you and me. For most people it’s not a fall off the roof or a waterskiing accident. It’s not necessarily a lifetime of smoking or greasy bacon cheeseburgers. It's life. Simply life. And it’s our life right now.

If you are among the brave few who made it to the end of this reflection, thank you, sincerely. You are the type of person who has the compassion to affect change. If you have the means, please consider supporting my campaign to raise funds for the American Lung Association. I’ll be climbing all 52 flights of the BofA building for my mom (duh) on March 7th. Better yet, please join us if you can.