I had snuck away from Melissa’s hospital room to eat dinner at the onsite McDonald’s. My order started healthy enough with the Bacon Ranch Salad but quickly turned indulgent with crispy chicken, medium Coke and chocolate shake—the new kind, with whip cream and cherry on top. I know, I’m weak, bordering on pathetic. But I needed a reward.

For several days I had tried helplessly to ease Melissa’s surging abdominal pain caused by another pancreatitis flare. Now I had gorged myself and would walk like a dog with its tail between his legs back into the room where she was resting—unable to eat and unable to drink for the pain—and ask her if the doctor showed while I was out. Maybe my question will throw her off the guilt on my breath. Maybe she’ll forget that her stomach is grumbling from hunger and searing with pain.

Maybe I’m an idiot for believing in maybe.

Welcome to a place I’ve come to call Absurdville. It’s not a location but a state of mind. You can be anywhere in the world and find yourself smack in the middle of Absurdville proper. Trust me I know, it happened to my family.¹

Welcome to Absurdville is a collection of essays recalling my family’s experience with chronic illness. When my wife Melissa was diagnosed with Multiple Sclerosis in 2007 at age 37, I knew our life was about to change. She would have new pain—excruciating pain—weakness, imbalance, fatigue, uncertainty, guilt, fear and hopelessness. She would have limitations. Still, we would learn to live with MS. And our two boys (Max 10yo and Luca 5yo at the time) would learn alongside us. Although we were heartbroken to see our idyllic lifestyle slip away, we were also hopeful that we’d find our way to a new normal, where life with MS was not only manageable but slowed to a speed that makes life more rewarding.

Little did we know that we’d be taking a long detour through Absurdville along the way.

Here, seriousness collides with humor. Logic is met with irony. Tears are dried with laughter. And tomorrow doesn’t exist. This is after all, Absurdville.

There’s a lot for a caregiver to see and do in Absurdville. You can live out the farthest reaches of your marital vows, learn that medicine is more of an art than a science, perfect the balance of work life and home life while blurring the lines between them, discover who your true friends are (and aren’t), and practice your skills as a nurse, coach, therapist, patient advocate—the list goes on. I’m looking forward to sharing the experience with anyone returning from, on their way to, or currently navigating a dark alley of, Absurdville.

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Every “road trip” needs a soundtrack. This one includes the artists and tracks that I returned to again and again to inflate my posture, sooth my soul and feel less alone. It begins with a song I first heard, coincidentally, in the car on 89.3 The Current during a frantic, late-night, pharmacy run.

Queue the music!
Artist: Local Natives
Album: Gorilla Manor
Track: Airplanes

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For nearly a decade now, I’ve juggled my daily responsibilities as a spouse, father, provider, and caregiver, developing a unique perspective in each role. I’m not only Melissa’s best friend (and her mine), I’m her eyes, ears and voice. I see what happens in the hallways of a hospital while she’s asleep in her room. I hear what others say when she’s not around. I listen to the doctors and therapists and counselors, and then I ask the hard questions that Melissa is terrified to ask. Still, she’s not without her own voice, even within the moments I share here from the streets of Absurdville.

For my two boys Max and Luca, I’m a counselor, gatekeeper of information about Mom, and champion of their need to experience more childhood and adolescence than they’ve been allowed. Helplessness is watching depression and anxiety consume us, one by one, and not having a good answer for, “When will mom be better?” Or when my clients send an email asking, “Will the work be done on time?” I’m indebted to my clients who listened to my shaky voice, again and again, and continued to believe in me and trust me. And to think that I’ve never given them a proper thank you—but how can I? A proper thank you—a long, tight embrace followed by me resting my head on their shoulder—would be unprofessional (not to mention, creepy).

 

Without a doubt, my time in Absurdville has impacted every part of who I am.

Finding yourself in the Absurdville state of mind?

Humor, humility, honesty and determination (often mislabeled as stubbornness) are the four points of a compass that can guide us home.

Join me—caregiver, husband, lover, life partner, father, son, brother, friend, colleague, business owner—there’s so much to learn from each other, so much to grind our teeth about, so much to laugh about till it hurts. The good kind of hurt.

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¹ My records of these days in Absurdville are based partly on notes thumbed into my iPhone over a nine-year period and partly on my recollection of people, places and events that are difficult to ever forget. Some of the chronology may be shifted or out of order, never to misrepresent the reality but to help other visitors to Absurdville feel understood and at home on these pages. To protect the identities of people and places, I’ve changed the names of some. Others I haven’t because, quite frankly, they deserve to not be invisible. Any similarities found between the people and places of Absurdville and the people and places of elsewhere are wholly intentional.

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Copyright © 2017. Russ Stark. All Rights Reserved.