Adversity’s Syllabus

Those who have a ‘why’ to live, can bear with almost any ‘how.’

Viktor Frankl

“Why does everything I do as a parent feel so impossibly hard?” I sobbed as I posed this question to my then-therapist, Dr. G. 

Mike and I were in a particularly hellish time trying to parent Jack, my now teenage son with special needs. At this point, Jack was only 5 and he flailed about in both psychological and physical pain day and night for 6 months.

Jack’s seemingly endless needs threatened to consume me as I stared into my own personal abyss. My unhelpful mind screamed how I was the biggest failure of a mother. That both of my children deserved better than they got.

Dr. G paused until my ugly-cry faded into a few self-pitying snuffles. Then he said something I’ve never forgotten.

If parenting a child with typical development is like working towards your Master’s degree in life, then having a child with special needs is like participating in a decades-long PhD program.

–Dr. G.

I never forgot his insight.

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Now I don’t think special needs parenting is the only way to work towards your doctorate in life, of course. Any event that flips your perspective shakes it upside-down, then flips it back upright, the pieces of your previous life fluttering around you like as in a snow-globe, counts as advanced coursework. In other words, any draining, permanent, life-altering situation will do. Any situation that having occurred makes you delineate how you were as a person “before” versus “after” the event.

Since my challenges with special needs parenting was the PhD program selected for my life thus far, it is from this perspective I can write.

Some of you experience this situation, plus additional challenges too. And you may feel like you’re up against insurmountable odds. And who’s to say another curveball isn’t waiting around the corner for me as well? So we must prepare ourselves as best we can to go forth and live purposeful, intentional lives while limiting the unhelpful self-pity that may surface on hard days.

When we are no longer able to change a situation, we are challenged to change ourselves.

Viktor Frankl

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How can we do this?

Here’s what I do. I seek out personal true accounts of those grappling with their own adversity, especially ones foreign to my own life experience. Learning about the human condition from these different types of books inspires and comforts me. Different voices and different stories can serve as signposts during the days I feel hopelessly lost. They give me various blueprints as how to design a collection of days into a meaningful life.

Because like it or not, as a special needs parent, my life is joined with Jack’s. The shape of my days dictated by the ever-evolving intensity of his care.

I am reminded of this reality since Jack’s on his summer break from school. My free time reduced and contingent upon the whims of Jack’s bodily functions and needs. I have temporarily lost that precious window of time during the school day for my own self-care, walks, errands and writing. These things are now stolen moments packed in around Jack’s meal times, snack times, bathroom times, and bathing times. But sometimes they don’t happen at all despite my best efforts and intentions. Because yeah, I get tired. And I know you do too.

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I take this reality better than I used to, I think. Maybe because I’ve absorbed some of those books, those true stories of hardships more challenging than mine. I think they help me gain a tentative acceptance of our circumstances, as well as a greater appreciation of everything good in my life.

Extraordinary actions often come from the most ordinary people. Stories of struggle, hardship and despair often show people achieving a hard won acceptance. This is its own victory and helps me way more than some unrealistic happy ending.

I marvel at the grace of those whose character was honed through heart-rending, circumstances. They who have experienced untold horrors that I hope to never know, yet can still appreciate goodness. Those are my teachers in our graduate school of life.

Man is that being who invented the gas chambers of Auschwitz; however, he is also that being who entered those chambers upright, with the Lord’s Prayer or the Shema Yisrael on his lips.

Viktor Frankl

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Here’s a few books I’ve read recently that have helped me . I hope they can do the same for you. Most of them are memoirs.

Man’s Search for Meaning by Viktor Frankel (Written by a neurologist/psychiatrist who survived Auschwitz during the Holocaust. I can’t recommend this book enough.)

Wild by Cheryl Strayed (Written by a novice hiker who journeyed the Pacific Crest Trail solo in a search for herself).

Formation by Ryan Leigh Dostie (Written by a former female Army recruit who navigates a male dominated field.)

A Nearly Normal Life by Charles L. Mee (Written by a man who contracted Polio in the 1950s just as the vaccine was coming onto the market).

Nothing To Envy: Ordinary Lives in North Korea by Barbara Demick (This journalist interviews refugees from North Korea in order to understand daily life in that mysterious nation.)

The File by Timothy Garton Ash (Written by a man who lived in the former East German police state and later discovered the secret police file created on him).

Fall Down 7 Times Get Up 8 by Naoki Higashida (Written by a man who has extreme nonverbal autism and how he perceives the world around him)

The Russians by Hedrick Smith (This book is out of print but can be found in second hand bookstores. It’s an interesting look at Russia circa 1975. Honestly, I didn’t enjoy the 1990 sequel as much).