Residual Issues
Parking Lot Sympathy and Sequela
We were out of milk. I added that to my long list of errands and appointments, set my mind on autopilot and drove off. Pulling into the grocery parking lot, I passed a man with a cardboard sign. In shaky black sharpie ink it read:
Clean and sober
Homeless and disabled
He didn’t look like the part; dressed in a new wool sweater and button down shirt, he seemed more high school math teacher than beggar. In fact he was reading a book — such a rarity!— I figured that was the reason for my double take.
Normally I would move on; sad for his plight but ready to avert my eyes. Lots of people beg outside this grocery — there is a shelter in the next block where they can eat and shower and frankly, the parade of sad people makes me weary. But this time, I backed the car up to read the smaller print on his cardboard résumé:
“Brain cancer survivor with residual health issue
Still believes in the Gods power in Strangers to help others in need. God Bless.”
I rolled down the window and asked him about his tumor. “What kind? Where?” People hoisting bags into their cars turned, surprised, as was I, by my confrontational tone.
He shut his eyes and wrinkled his forehead, straining to remember. He had the leathery sunburn of someone living long stretches outside.
“Ah heck, it’s so long….gilo…giblio….”
“Glioblastoma?” I asked.
He smiled and nodded, “yes, yes! That’s it!” He offered to show me his scar at the back of his head but I knew what it would look like: five or so inches of tight raised flesh in a criss-cross pattern, at the base of the skull or close by, depending on the tumor site. Just like my daughter’s.
I emptied my wallet and handed him a wad of bills and all the spare change I could find.
“My daughter,” I started to tell him but even now, ten years after her surgeries, my throat still constricts and it’s hard to get the words out. He nodded again and looked down.
“How’s she’s doing?” he whispered.
“Oh, she’s fine,” I wiped away tears, embarrassed. Obviously she’s not reduced to begging on the street but I suspected that he knew the real score. My daughter and Mr. Clean and Sober are members of a secret club: survivors of life-saving miracle surgery — alive and well — but also, not quite.
I cleared my throat and tried again. I pointed at his sign.
“She also has residual health issues…she can’t… she…” My vocal cords continued to seize.
“Can’t concentrate?” he offered.
I bit my lip and listened as he ran through the checklist of everything my daughter has endured for ten years.
“Insomnia? Anxiety? Depression? She doesn’t drink, does she? Cuz that’s won’t help, believe me…”
He gave me advice on medications to help her focus. He talked about a new amphetamine salt medication he called a “godsend,” and wished he had taken it earlier. It would have made a big difference, he said and although he didn’t say with what.
He made me promise she wouldn’t turn to drink and I white-lied to assure him all was well. I could have told him that her doctors also sternly warned her from drinking while on a cocktail of anti-anxiety and mood stabilizers, but I bet he wouldn’t be surprised to learn how poorly this plan plays out in the reality of college life — or just how vulnerable a girl on meds becomes after even a single beer. For a fleeting moment I saw a sun burnt version of her sitting on the curb with a sign of her own. I shut my eyes to snuff out that particular vision. No, I promised myself, I won’t let that happen. Not on my watch.
I asked if he knew where the homeless shelter was and he said he did. He thanked me for the money to buy lunch. I promised I would be back to check on him. “God bless,” we both said, six or seven times.
Somewhere in the dairy section it dawned on me: I had just gotten more practical advice and compassion from a disabled homeless man in a parking lot than I have in ten years of taking my daughter to follow up visits. There’s no denying that she is a medical textbook happy ending. Her brilliant team of surgeons and nurses labored for hours to give me what I prayed for a decade ago: a tumor-free, healthy, living child. But all that time I have wondered: do any of us understand what she is living with?
At follow up visits I would ask if we should worry that her grades had nose-dived; that she wouldn’t or couldn’t stay organized enough to do her school work. Wasn’t it odd, I asked, that her handwriting had reverted to chicken scratch? Why was she crying at the computer keyboard, admitting through tears that it took “so long to think” that she couldn’t write a simple email to her friends?
There were other questions too, balled up in a lump in my throat, that I couldn’t begin to ask, like why was she so volatile — angry then weepy, glaring at everyone, even her friends, testing their patience until there were suddenly no more friends to glare at. I didn’t ask because I had no idea how to tease apart what was tumor-related and what was an ugly adolescent episode. Not the kind of question I felt, at the time, deserved the time and attention of world-class neurosurgeons.
The questions I could ask were met with polite concern, a pat on the shoulder, a shrug. It was not their department — I understood that. I really did not expect a neurosurgeon to hold the hand of a teen going through a rough patch. But what I didn’t — and still don’t — understand is why no department like this exists at all; no place to talk through the mental fog that frustrates so many brain tumor survivors, no check in point to see how they’re are coping — or not — with every day life.
Instead, we had to help our daughter find ways to cope with issues we couldn’t quite put our fingers on; was it depression? Bi-polar? Bad parenting? In between therapy appointments I looked up the definitions of words never once uttered by hospital staff: sequela.
Instead I had to stumble upon an April 6 Washington Post article that rang so true I choked on my morning coffee. We were not alone. Children recovering from all kinds of invasive surgeries are showing signs of residual issues that will not go away.
Should we be concerned about this? Did anyone in our growing sphere of doctors and therapists know anything about this? The pained silences and shrugs led me to believe I was just grasping at straws.
Instead I had to book an appointment at the asphalt office of a sun burnt man who dispensed validation and empathy — all for the co-pay of the sticky spare change in the bottom of a mini-van cup holder. It was an empowering elixir to hear and see the simple truth I had long suspected: the sequela is as real as the tumor and almost as dire. There are long term post surgical consequences that — while not as deadly as a growing tumor — can, if unchecked, completely derail a life.
In the check out line I resolved to no longer take shrugs for answers. The next medical expert who minimized our concerns I would refer to Dr. Clean and Sober, a man who, in a fairer world, ought to lead medical school seminars entitled Residual Issues and Object Lessons.
But of course it’s not a fairer world. Neither he nor my daughter’s experience will merit further notice — not until some clever someone figures out how to make money off of post-surgical sequelae. Until then, he’ll be a Clean and Sober man with a sign, she’ll be a young adult Sisyphus rolling her issues uphill and I’ll be a mom having an existential crisis as I shop for reduced fat milk of human kindness. For me, at least, the truth is still in that cardboard sign, in ways the author may not even have suspected. I hope he realizes he is the Stranger imbued with the power to help others in need. I hope he knows I believe in him.
