skin in the game

Recently, I saw a meme asserting that the reason some people don't believe Covid-19 and racism are real or serious is because neither has affected them. I concur. As the mother of a significantly disabled and chronically ill child, I experience a similar dynamic: other's underestimation, denial or lack of understanding and empathy regarding the challenges we face in navigating and enduring the complex and often sorry world of our child. 

While walking Smellie at the fields the other day I heard a twelve-minute segment on NPR about a disabled woman's struggle to survive in a hospital where the doctors and nurses repeatedly dismissed the notion of her quality of life because she couldn't walk or talk. In doing so, they withheld critical medical care which led to her death. She was only 36. Listening to the story, I was reminded of how Michael and I sometimes feel when we attempt to advocate for our nonverbal, legally blind, autistic, incontinent, seizure-prone, intellectually and physically disabled, utterly sweet and defenseless child who can do virtually nothing by himself. Despite Calvin's struggles, he has a certain indisputable quality of life, and he touches people in meaningful ways. In other words, his life matters. And as his best champions who know him far better than anyone, so does our advocacy for him.

Beginning when Calvin was two, we met with neurologists whose virtuous aim was to eliminate his seizures, albeit seemingly at any cost. To achieve their goal, they prescribed highly addictive benzodiazepines and increased those and other drugs to debilitatingly and sometimes dangerously high doses, usually downplaying or denying the side effects caused by the drugs. That these physicians did not have children of their own suffering from medically refractory epilepsy allowed them to be somewhat divorced from grasping the drugs' heinous side effects. This led to what often felt to us like the cavalier prescribing of the medications. These doctors couldn't know the anguish of seeing their own precious child go berserk, become a zombie, careen, shriek, cry, stumble, regress, wither away, explode, panic, perseverate. In other words, their guidance was worthy of question because they had no skin in the game, (which is not to say their advice should have been utterly disregarded.)

Some of the best treatment we've received—and to be fair, we have gotten plenty from humble specialists who are the most sympathetic listeners—was from two emergency room physicians whose eight-year-old daughter had epilepsy. Calvin was eleven that time he was admitted to the ER after a cluster of seizures which weren't responding to emergency medication. Immediately upon discussing a plan to alleviate the spate of fits, the physicians, who worked consecutive shifts, let us take the helm. They allowed us to administer Calvin's cannabis oil to him, something that most hospitals prohibit. Their empathy was palpable. Their ceding to our strategies was clear and deliberate. Because of their daughter, they had skin in the game and could empathize with our situation and responded accordingly.

When Calvin was an infant-toddler, I was upset by a magazine article about a mother of healthy sextuplets. When I expressed my resentment, one of Calvin's in-home nurses responded, "You're not over that yet?" Apparently, my lingering grief, sense of loss and despair over having a disabled, feeble, seizure-racked child was unreasonable. Also early on, during some of Calvin's demanding in-home therapy sessions, various professionals told me that Calvin, my tiny, limp premie with his incomplete brain, would cry in order to manipulate me into picking him up. Upon hearing this, my heart began to pound. The truth was, my fragile child was in distress and simply couldn't cope with the colossal tasks being asked of him. It hurt me that they couldn't understand.

Some years ago, I read that the cells of a fetus remain inside their mother's body—her tissues and bloodstream—for decades. I reason this might account for what is commonly referred to as the maternal bond, and might explain why the gut instincts of mothers seem so often right.

I recall too many times I wish I'd followed my gut rather than various specialists' recommendations. As one with the most skin in the game (besides Calvin), I should have patently refused to put him on that first benzodiazepine when he was three. I should have taken him off of the rigorous ketogenic diet when it clearly wasn't working. I should have questioned allowing a painful and bloody intubation when it didn't seem necessary; I should have been more assertive when asking for the best expert to insert Calvin's IV before he lapsed into a forty-five minute seizure, one that I had sensed was looming despite the doctors' and nurses' skepticism. I should have refused the piling-on of medications and the ratcheting-up of doses to harmful levels.

But, as with racism and at some level, Covid-19, there's an element of society that tells us things are not as bad as they seem. We're told everything will be okay. We're led to believe we are imagining or exaggerating things. We're taught to doubt ourselves, and to unquestionably trust and comply with authority. We're sold a bill of goods that experts undoubtably know our children better than we do. We are judged—for how we deal or don't deal with adversity, for our assertiveness, our demands, our expectations, our protests, our impatience, our tack—by people who have no skin in the game and by those incapable of fully understanding—despite thinking they do—what it's like to live with, love, raise, advocate and fear for a disabled, chronically ill child ... or a nonverbal loved one in the hospital with suspected Covid ... or a mother of a child with black skin.

February, 2015, Photo by Michael Kolster