Sometimes in my double agent life as doctor an patient, theology fails me and I don’t have all the answers. This is a post about dying young or losing function or living with the uncertainty of illness. Sorry its not going to be one of those inspiring brave little girl in the wheelchair post.
At the end of my palliative care rotation, I helped the professor clean up after our project presentations. He looked at me, I looked at him. He makes an awkward allusion to my disability and the story I had just shared about my friend Laura. I tell him I have a genetic form of degenerative joint disease. He pauses, his eyes are kind and for a moment we share something that is rare outside of my tribe. “You really understand, you get all of this.” he gestures beyond the pile of projects, reflections ranging from photographs to scripture to paintings representing our palliative care experience ranging from the sacred to the mundane.
“….Yes.” I took my project from the pile and walked to my car in the fading November sunshine. Shivering.
At the time I was 24 year old and slowly and painfully coming to grips with my failing joints and tasting the bitter, raw fear and trepidation of my own fragility and mortality. I met a lady with RA who was in her 70s, going blind and had no hand function earlier that year and she had shattered any illusions I had of somehow being through the “worst of it” with all my childhood surgeries. Then there was my 28 yo Romanian friend who died and a year later there would be the 18 yo with muscular dystrophy who was my first pediatric death on my watch.
I savor life differently. I savor work differently. I savor normalcy like cooking good food, wearing clean clothes, brushing my hair, going to church, buying my own groceries, paying bills, good conversations. I savor and fight for weekends with my family, taking that road trip my sister and I have talked about for years even though its expensive, moving to Africa for a season I savor them and don’t waste time because I know that my destiny according to society was to live in my parents’ basement and because as anyone with a progressive disease knows, I never know how long anything is going to last. My new hips could last 30 years or they could last 6 more months.
Its a crap shoot. Its a gamble. Its anyone’s best guess.
So yes, I get it.
But don’t fool yourself, it doesn’t always make me a better doctor.
20 something yo with a neuromuscular disease that most people die from in their late teens who isn’t eating anymore, in constant pain and at one point last night said ” I want a ventilator, I’m going to die tonight.” I couldn’t control his anxiety, I couldn’t seem to calm his breathing and I couldn’t seem to tell him the truth which is he is dying. He knows, I know, his family knows it (although adamantly deny it), God knows it. Everyone knows it. But we are not talking about it.
I get that too. Because I don’t talk about it either. I don’t talk about what life will be for me when I am in my 50-60s and the hips fail or my hand arthritis is so bad i can’t palpate babies’ bellies anymore much cook, clean, drive, etc. I don;t talk about how I sometimes worry about burdening my sisters or if i was to get married with this. And i don’t talk about how much sometimes it sucks and how scary it is to watch your body fail you and become steadily more deformed with your body attempts to grow bone or muscle to support what it can’t repair which is the crappy cartilage all the while when all your friends are having babies and wearing skimpy wedding dresses that show off their beautifully unmarred bodies. How I am happy for them but somehow all the more painfully aware that I will never be like them and my participation in their world is fragile.
I don’t REALLY get it, I don’t claim to know his experience, I ‘ve only had a taste of the feast he has been forced to ingest. But the taste is enough to know that the other thing is while all of us medical people wonder how WE GOT HERE medically, why no one managed to talk this family into a plan, to know this young adult’s wishes….the tribe part of me that can look into his eyes and for just a moment stand in the abyss with him knows that we are here because not talking is what’s been expected of us, for the sake of normalcy, for the sake of sanity. Talking about losing function or dying young is just not what we want to talk about around the dinner table or even the examination table. Its not the RIGHT thing to do but its what makes everyone else comfortable.
I wanted so badly to make it better for my patient, I called palliative care, I lingered at the bedside. I prayed. I whispered to Laura to please care for him when he goes.
Because this is where the Pollyanna, cute little kid in a wheelchair, chronic illness, Jerry’s Kids, Life time Original movie, inspirational memoir, NICU baby, special Olympics thing ends.
This is the hard stuff. The ugly stuff, the things that keep us up at night, the things that challenge our sense of right and wrong. But for those of us who live with a taste or with feast of it, its the stuff we so desperately want to not bear alone. Don’t ignore us, don’t pretend it doesn’t happen. DOn’t preach at us and tell us we never get more than we can handle or that God is going to make it all better…
Acknowledge us…Walk with us…take a moment, look us in the eye and get it.