I volunteered at the Jimmy Stewart Museum in high school. This was before the days of high school students being required to perform a minimum number of community service hours in order to graduate (compulsory volunteerism. interesting concept). I'll admit, though, I didn't choose to volunteer there out of a passion for preserving the legacy of Jimmy Stewart. I was determined not to stay in my tiny hometown. I wanted to get into a good college and wipe the dust of that town off my feet and see the world. So, I needed to fill up my resume.
Appropriately enough, this is the same ambition George Bailey held. Jimmy Stewart played George Bailey in the movie "It's a Wonderful Life." I still, at the age of 38. am amazed every time I encounter someone who hasn't seen this movie. The product of growing up in Jimmy Stewart's hometown I guess. For all you oddballs who haven't seen it, I will enlighten you.
George Bailey grows up in the small town of Bedford Falls. His father runs a small Building and Loan that loans ordinary people the money to buy a house. Opposing him is the evil, greedy Mr. Potter who owns the local bank. He charges high rates and kicks people out of their house when they can't pay. All he cares about is money.
George is determined to grow up and leave Bedford Falls and do great things. Due to a series of life events, this never happens. He ends up running the Bailey Building and Loan just as his father had. Helping the people of Bedford Falls by being a fair and compassionate businessman as his father had. Working long hours for sufficient but modest pay as his father had.
There is a scene in the movie where Potter is attempting to shut down the Building and Loan after George's father dies. He talks about the compassionate way Peter Bailey ran the Building and Loan and says, "What does that get us? A discontented, lazy rabble instead of a thrifty working class. And all because a few starry-eyed dreamers like Peter Bailey stir them up and fill their heads with a lot of impossible ideas." George tells Potter off with one of my favorite monologues of all time.
"Just remember this, Mr. Potter, that this rabble you're talking about... they do most of the working and paying and living and dying in this community. Well, is it too much to have them work and pay and live and die in a couple of decent rooms and a bath? Anyway, my father didn't think so. People were human beings to him. But to you, a warped, frustrated old man, they're cattle. Well in my book, my father died a much richer man than you'll ever be!"
(watch it here )
As you have treated the least of these, so you have treated me.
I didn't know then, at eighteen, what I wanted to be. But I knew whatever it was, I wanted to do it with the same integrity as George Bailey.
Fast forward 20 years. December 2017.
Max is almost 6 weeks post-IVIG #3 and seems to be responding. It's up and down. He had a good week where he played and laughed and ate a raspberry (!) A raspberry. You know, the *fruit* that has *tiny hairs* on it. A Christmas miracle if ever there was one. Then he had a few bad days where he sobbed for hours and stayed up til 6am with racing thoughts, tics and fear. Always fear. He and Auggie and Lena and I all slept on his bedroom floor (well, we slept off and on. He didn't) If you're one of the patients I saw the next day, I'm sorry if I didn't bring my A game.
Max fell off the cliff for the first time in 2009. He fell off again in January 2017. Hoping for better times in 2018 for my Max.
Hoping for better times for all the families I take care of in 2018.
But amidst the love and hope and sadness and heartbreak, I am angry too. Angry at the Potters of the PANDAS world.
How many children are out there right now with PANDAS and their parents have no idea? They're carrying diagnoses of OCD and Tourettes and anorexia and ADD and ODD. Being prescribed Risperdal and Adderall and to hell with it all if the parents insist there's something else going on.
How many children are out there right now with a diagnosis and no access to proper treatment? Physicians unwilling to treat. Insurance companies unwilling to pay.
How many? We don't know. But it's more than we think.
I look at my son lying on the basement floor wrapped in a sheet, wearing the same inside out backwards white undershirt he's been wearing for days, sobbing deep guttural cries. "I'm so sad, mommy. I'm so sad. I'm so sad. I just want to die." I ask him why he's sad. "I don't know. I'm just sad."
Hell is a place where you are outside of God's love. PANDAS truly is hell. He feels abandoned by God. Abandoned by his parents. He feels helpless and hopeless. Lost in an excruciating pain and fear that has no end. A darkness so deep and so wide. The belly of the Bear.
Doctors are responsible for this. They have left my child to languish in hell for 9 years. And they don't feel one shred of remorse about it.
Academic physicians at centers like Children's Hospital of Pittsburgh train and continually educate community physicians . The academic centers guide research and establish evidence based medicine guidelines, clinical consensus papers, licensing exam questions. They determine the fate of medical students, residents and fellows. They make or break a physician. The more ambition a physician holds, the more beholden they are to the ivory tower of academic medicine. It is these physicians that are most responsible for the thousands of children and families enduring hell.
Community physicians are also responsible. For not questioning the things they are taught, for a career focused on test scores and pats on the head and self congratulation. For looking into the anguished eyes of the parents of children they've taken care of for years and not doing everything they can.
Medicine is not a culture where questioning is encouraged or even tolerated. It is a culture where doctors who step out of line are ridiculed and shamed. Where one who challenges the status quo is pulled aside and given a talk where things are implied that leave a gnawing fear in the gut. We have invested so much in becoming physicians. There is so much to lose. Someone who has that much to lose is very easy to control. Someone who has that much to lose, and so much else to gain, can lie to themselves pretty easily. Especially when everyone else around them is telling themselves the same lies.
Will you sell your soul to gain the whole world?
To go against Children's is to risk your career, your reputation, your paycheck. There are student loans to be paid back, mouths to feed, a career so hard earned. On the other side of the scale is a tragedy of epic proportions. Families imprisoned in their homes, children taking their own lives, childhoods stolen. Trauma. Suffering. Hell.
I have worked with these physicians. Trained with them, learned from them, laughed and cried with them. And now I'm speaking truth to them. They are wrong. They are harming children. I do not care what their intentions are. Good, bad or indifferent. The fact remains, these children and families remain.
I am certain in my career I have seen at least one patient with PANDAS and missed the diagnosis. Because I'd never even heard the word uttered until after I'd graduated residency. And for that, I am deeply sorry. Maybe they're still not diagnosed correctly. Maybe they never will be. If ever I meet one of them and they tell me their story, I will tell them how sorry I am. My heart will break for them. I will tell them I'm trying to do better.
Where is the moral courage? Where are the physicians for whom medicine is a calling and not just a job?
I trained under a physician like this in medical school. His name was Steven Gelfand and he once literally told the head of my med school something much too strong to type here when she mistreated a medical student rotating with him whose mother was dying of cancer. He was not beholden to academia. He was not afraid. He always did what was right for his patients. He never stopped learning and questioning. Medicine was a sacred calling for him. He was also my sons' neuropsychiatrist when they came down with PANDAS and he did not diagnose them. Because he didn't know. And that's okay. That's not his fault. Because if he were alive today and I told him, he'd feel genuine empathy for me. And he'd learn everything he could about it. And wouldn't let it happen again. And would have some strong words for Children's.
I'll keep it PG and just say the following,
"Just remember this, Children's Hospital, that this rabble you're talking about, these hysterical parents who ought to stop Googling everything... they do most of the working and paying and living and dying in this community. Well, is it too much to have them work and pay and live and die with a kid who isn't afraid to leave the house, who doesn't have violent rages, who runs and plays and laughs and gets to be a kid? Anyway, Dr. Gelfand didn't think so. People were human beings to him. But to you, a warped, frustrated academic center, they're cattle. Well in my book, Dr. Gelfand was a much smarter doctor than any of you will ever be!"
Merry Christmas, my beautiful PANDAS families, All the hysterical mothers who need to stop Googling and apply some Prozac and discipline to their children. May all you starry eyed dreaming moms continue to fill us physicians' heads with impossible ideas. May 2018 bring healing to our children and moral courage to their physicians.