Wichita Vortex Sutra #3
“Does she have a name?”
That’s the question I always ask. If you’re in the funeral home to make funeral arrangements for a miscarriage at 15 weeks, of course she has a name. Sometimes – only sometimes - they don’t have names. From the hospital, they’re usually just “baby,” the last name of the mother tacked on as an afterthought.
Usually, though, even the slip of the lightest shadow has a name.
I always assumed mine would be a boy. He would be ten next year.
He never had a name.
It was the kind of accident that comes from hormones and teenage stupidity, birth control nullified by the unfortunate timing of the universe. His father had been my best friend since I was 13, the man I thought I would marry in my late 20s until he started to flail in the pool of addiction and I couldn’t pull him out by myself. Rum and cocaine and weed and Xanax and my best girlfriend drove me to the clinic, because I couldn’t even bring myself to tell him I was pregnant. I was afraid of the shame, of him telling our friends, of feeling like I had made the wrong decision.
It was never the wrong decision, even now.
We pick her up from the pathology lab in the hospital. She is 15 weeks old. She has a name, one her parents tell me from the other side of the desk. Her mom smells like fragrant flowers and the puffy skin under her eyes is the only betrayal of tears. I use her name through the arrangement conference because it gives them power. It makes her more than just a shadow. It makes her a person, puts weight into how wanted she was.
I remember asking for a copy of the ultrasound through the heavily medicated haze of anesthesia, the nurse gently denying me twice.
She’s been posted, someone with a steady hand and a very sharp scalpel making the tiniest of Y-incisions in a body barely bigger than the palm of my hand. Her skin is gelatinous and translucent red, the tiny vertebrae of her perfect spinal column no bigger than pinheads. She has just enough definition to look the way a human should eventually, but not quite enough to look exactly like a human. Her ribs are perfect, tiny straight dashes, the curve of her hipbone like afterthought parentheticals. Her head lists to the left.
There was a mobile above the operating table, my feet in stirrups. I don’t remember protestors, though I think there were some. I was parched on the way home, head lolling against the leather of the passenger seat. We pulled through the Wendy’s drive through after the recovery room, a large Coke sweating as I clutched it between my knees, cell phone in my hand while I debated on whether I should call him and tell him or not.
I did. It was a mistake.
Now I am closer to 30 than to 20, the days interminably slowed by surgical healing but the years speeding by in fast-forward motion. Now I sleep solo in bed at night, skin warmed only by the furry beasts stretched along my legs. Now I am alone in my diagnosis, my presumed infertility, my lack of partner, the genetic contagion I carry at the base pairs of my DNA.
“We don’t want to hide her,” Mom says in the showroom, “but this one doesn’t look quite so… urn-like.” Dad nods in quiet agreement, adjusting the brim of his baseball cap. I hover around a corner, waiting without pressuring.
She hugs me at the end, after I’ve made her laugh. For a moment, we are together in our loneliness. Her perfume sticks to my suit jacket for the rest of the day.
He never had a name, even at 12 weeks. I never wondered what happened to him when I left the clinic, even though my body will never make another human. I rarely thought about him even as a him, pronouns eradicated by my desire to be free of the burden.
She had a name. I use it every time I talk about her. I will try to be the one who gives her back to her Mom and her Dad, though I’m not sure I have the fortitude. (I will fake it until I get home and have furry beasts to lick away the salt on my cheeks.) Now she is an urn full of hypotheticals and parental dreams, intangible.
When I was 18, I didn’t have those for him.
Now that they are gone, I do.
With a Little Help from my Friends
There comes a moment - mired in an ocean of insurance billing paperwork and trying to parse through who exactly you owe money to and why the hell you haven’t (or maybe you have?) met your deductible yet - when the phone rings and it’s your podiatrist. He says he’s very sorry, but he looked at the x-rays and you actually can’t start to put weight on your foot yet because it isn’t healing right. Also, you’re going to need a bone growth stimulator, and even though you’ve got decent insurance you pay out the nose for every month, it’s going to cost you another $1,400.
It is a sinking, drowning moment of utter darkness and it requires a bottle of wine, even if you have to count your change to pay for that bottle at Bevmo.
Usually this moment comes in conjunction with seeing your latest pay stub. Funeral directors, on average, don’t make a whole lot. Funeral directors who are also apprentice embalmers really don’t make a whole lot. Apprentice embalmers who are tangled in divorce proceedings with adulterous husbands and living in one of the most expensive areas in the United States super really don’t make a whole lot, and being chronically ill in America is cost prohibitive, to say the least. Apprentice embalmers who are two months away from being able to take their state licensure exams are definitely, absolutely, really not going to leave the state - not after a two year commitment to their apprenticeship.
It is around this time when you realize you maybe need help. You’ve got family, amazing family who drops everything to cross the country and help - but family that also has your two sisters at home, two college tuitions to be paid for, and pockets that are only so deep. And you mull it over with your glass of wine, and you feel a twinge of pride and an acrid dislike that you’re in a position where you even need to ask for help.
This is also right around the time that your best friend tells you that you’re being ridiculous, and then she helps you set up a fundraiser to help with your medical bills.
It is, therefore, now the time that I very humbly ask for a little help from my friends.
If you can donate, know that I am appreciative of every single cent. If you can share my link, know that I am grateful for every single click. If you read this and sent me some love and empathy, thank you for every thought. Y’all have been a huge part of why I haven’t drowned since March of 2013. Thank you, thank you, thank you.
Holy hell, you guys. You’ve almost helped me meet my original donation goal for a 30-day period in two days. I would have been thrilled to have hit $1,000. I’ve increased the number simply to accurately reflect the associated costs of EDS since March, 2013. I’ve spent the entire day happy-sobbing. I look utterly insane, and I am so grateful and thankful to have such beacons of kindness, light and love reflecting back at me. I love you guys.
But only in their dreams can men be truly free.
There have been a lot of articles written about Robin Williams, about mental health and suicide and depression - enough articles that I wasn’t planning on addressing it because so many people have eloquently and succinctly touched the issues that needed to be addressed.
There have not been a lot of articles about his Parkinson’s Disease.
There is something incredibly lonely about staring down the chasm of a degenerative disease diagnosis. No one can prepare you for what it feels like when your own body mutinies. No one can describe the feelings of helplessness and humiliation as your independence is slowly eaten away by each unpreventable injury or fallback. Having to ask for help for basic tasks, needing someone to carry you up the stairs just to get inside. The exhaustion of everyday chores as they become Sisyphean. The heartache that comes from having to abandon doing things you love - like running - because you are completely, utterly, physically unable.
The slow decline of degeneration takes a physical toll on you. You lay in bed at night, exhausted but unable to sleep, the pain like a tic at the edges of your fuzzy thoughts. You’re powerless, trapped inside the cage of your own self. Drugs take the edge off the blade, but they don’t change the fact that you’re still being stabbed. You walk the fine line between sobriety and medication, your own razor-sharp edges dulled by pain or opioids or both. The days go by and it’s a ticking countdown further into the degeneration, one second at a time. You can treat palliatively, try to slow the disease into submission, but there is no treatment.
That same slow decline takes a toll on you mentally. Your future is painted by the expectations of reality under the diagnosis. You make checkmarks next to boxes of new symptoms, each year pitching and yawing deeper in. You try to prepare for the worst, because the worst is realistically the best guess. You miss out on milestones and experiences. Your life is painted in assistive devices and doctor’s appointments. You’re still always other, set apart, sick, abnormal. People relate the best they can within the scope of their own paradigm, but they still don’t want to talk about it, because it scares them. Or suspect you’re thinking yourself into the next symptom, the next assistive device. They see you functioning because no one else is going to pay your bills, see your painted smile and read it as legitimate because no one wants the burden of your sadness all the time.
You take up meditation, or religion, or whatever hobbies make you feel better. You make lists of the good things, the positives. You appreciate your friends and family, try to enjoy what you can when you can. Love your dogs or your kids. You create, somehow, try to turn the overwhelming negative into acceptance, into light.
But it doesn’t change the degeneration, the debilitating fragility and frazzled exhaustion.
Do I wish suicide hadn’t been where Robin Williams ended up this week?
That doesn’t change the fact that looking at the diagnosis of a degenerative disease is like staring down the barrel of a loaded gun. Your finger’s on the trigger but you don’t get to choose when you finally fire. Your own inevitability is completely and utterly out of your control.
Do I understand why he took the shot, quite literally, into his own hands?
I think, perhaps, that I do.