The good part about writing Stephanie's story is that I have an excuse to call her all the time. I ask her to edit the pieces for accuracy and clarity. I fear that what I'm writing is too personal, or that the style is could be offensive in some way. It's such a delicate situation. But Steph always answers my prodding questions graciously, explains varying medical procedures with patience. The story is important to tell for many reasons, one of which being to prevent this from ever happening again, to anyone.
I'm sitting at the cafe in Boone as evening settles purple-grey on highway 421. I'm almost done writing up a section of the story when I decide to call Steph, just to say hi. It's been about a week since I visited her at Duke. We were all waiting to see what would happen during the next six weeks as the blood patches hardened into place. We held our breath. We counted the minutes that she stayed whole.
She picked up and I knew instantly. She spoke slowly, as if through a haze. She said hello, asked me how I was.
"Steph-" I said, feeling panic blow up like a balloon beneath my ribs. "What happened?"
"It didn't work," she said, simply. BAM. The balloon burst. I felt winded.
"Oh. I'm sorry" The inadequacy of my reaction floated between us. "What's going to happen next?"
"I'm going back to Duke, this time they're going to mix glue in with my blood, hopefully that will make it stick."
"Okay, Steph. It's going to work this time."
"I know it is."
To catch up on this ongoing story, click here.
Steph and Ammen once lived in Boone, North Carolina, a college town in the high country of Appalachia. On certain mornings they would go to Mosaic Books, where I am writing at this very moment, to read over coffee. One summer day on a nearby river, they met a bearded man named Grant, and his soon to be wife, a strikingly beautiful woman named Laura. Laura is a professor at Appalachian State. The couple also own and run an adventure outfitter called River and Earth Adventures.
As the story goes, on that particular day, Ammen was teaching Steph to kayak, and Grant was teaching Laura to kayak. Let me tell you, it takes a rock solid relationship to survive that tutorial: cold water swims, water up the nose, shouting and cursing, fear and trust and the whole damn thing. I know how to kayak, very well, and I still yelled my head off at Will three days ago as I followed him down the Watauga gorge. I missed a move, crashed down the left side of the river instead of the right, and ended up gasping in the eddy below, completely unharmed. "I WASN'T GOOD ENOUGH FOR THAT RAPID, WILL!" I shouted at him. "I SHOULD HAVE WALKED!"
"You did great," He responded with sincerity. "Excellent recovery. And here you are in the eddy, all safe." I fumed, infuriated, and refused to speak as I followed him down the next mile of rapids.
And so, when the four of them met on that on the river that beautiful summer day, both couples were arguing. The women became fast friends and griped about the men, the men became fast friends and griped about the women. From that day forward, the four of them had many adventures together, until the day that Ammen and Steph moved back to Seattle. When, a few years later, they scored a permit to run the Grand Canyon, they invited Grant and Laura along. They also invited me.
Laura was pregnant with Asa at the time and had to remain on dry land, but Grant signed on immediately. One of Laura's students was a kayaker named Will, tall and knock-out handsome, from Memphis Tennessee. He was kayaking buddies with Grant, and when he heard about the Grand trip, he marched to the registrar's office, withdrew from winter quarter, then went home and packed his dry bags.
And that's how we met. Grant and Will drove from the South East, Ammen, Steph and I flew from the North West, and we met in the middle, on the banks of the wild Colorado river, on the fringe of polygamy country, in an ice storm.
Two years later, I moved to Boone, down the street from that Tennessee boy from the Grand Canyon. When Grant and Will are paddling the spring run-off and Laura is at work, Asa- now a blond haired toddler- and I go to the library together; we walk around town, his little hand curled around my one finger.
It's all because of Stephanie and Ammen. Do you see what I mean? She isn't just a friend. She is the person who reached up and punched holes in the sky, so that the stars could fall into place. What I do, where I am, who I kick in bed in my sleep each night, is because of her. What if I hadn't met her, what if she hadn't met Laura and Grant, what if Laura and Grant hadn't met Will, what if we had never gone to the Grand Canyon, questions not worth answering. Because they did happen.
If you will remember, the last myelogram was ineffective. All of the past medical procedures had been ineffective at patching her spinal leaks- in fact, they had all exacerbated the problem. Her family searched and searched, and her mother- herself in the medical field- eventually discovered a doctor who was the world's foremost expert in spinal leaks. This doctor, a woman, performed nothing but mylogromas, spinal taps and blood patches. Steph referred to this woman as 'the last resort.'
In February, 2010, Steph flew with her family to the hospital at Duke University. The specialist was warm and reassuring, the complete inverse of the long string of previous doctors and interventions. "We will fix you," said the doctor, her hand on Steph's shoulder. "And if this doesn't work, you will come back and we'll do it again. And if that doesn't work, we'll do it again. We'll keep doing this till we fix you."
Imagine what those words must have felt like.
As the myelogram was performed, the ink surging through her column illustrated not four- the original number of errant needle stick- but ten leaks. Steph's column was a porous pipe running alongside her spine.
How did this happen? How did the animal that bit her grow six extra teeth? I'm shaky on the details, being in no means familiar with medicine or even anatomy, but here is what I can piece together. Steph lost a copious amount of cerebral spinal fluid after the original injury- enough to fill multiple pints of Ben and Jerrie's ice cream, and her body grew accustomed to dangerously low levels of fluid. Later, when it was increased by medication to a normal level, her dura burst in ten places, trying to expel the fluid.
And so the doctor in North Carolina patched her up with ten seperate blood patches.
A few days after the procedure, Laura, Grant, Will, Asa and I traveled to Duke to see Steph. We piled into the River and Earth Adventure Van, with the window stuck down and the wind howling on the interstate. "WOOHOOO!" Hollered Grant. "Appalachia comes to the big city!" We ate breakfast from Biscuit World and wondered what the visit was going to be like.
In the hotel parking lot, we sprung out of the van like clowns: four wild haired adults, a toddler, a dog.
Steph was very skinny, almost glamorous in the haute-chic sort of way, a scarf wound tightly around her neck. But she looked powerful, as if she had endured and conquered more in the past nine months than any physical challenge had ever presented to her. Regardless of what was happening to her spine, in her mind and soul, she had transcended, she had beaten it. Mental fortitude and insight beyond the scope of my understanding had transformed this callamity from devastating to enlightening. She radiated a combination of acceptance and defiance that had combined, reacted, and created a pure, straight, elemental strength.
She floated within the temporary reduction of her life: the lawn chair in the patio, the hallway, the elevator, the bed in her room. We followed her, gingerly, pulling the dog and the toddler away whenever we thought they got too close. All strength aside, anything could burst those fragile, essential blood patches. Laugh, sneeze, cry, hug, open a door- do it all with the utmost caution, or you're back to the beginning.
After an hour or so, the boys sidled downstairs to drink beer in the downstairs bar. The women remained with her. I tried to fight the urge to tell her every small thing that had happened to me in the past two seasons, but I lost. And in the middle of one of my long winded stories, I could feel her begin to fade. Her head pulsed in pain even as she lay flat. At that precise moment, when her gaze drifted away for just an instant, her mother appeared by her side. "You have to leave her for a while," she said to Laura and I, "she won't say it, but she isn't feeling good." It goes without saying that her mother's instincts were astoundingly accurate.
We collected ourselves, went downstairs and watched the last minutes of a football game from a tv suspended over rows of glass liquor bottles. I chased Asa around the luxuriously furnished hotel. I felt uneasy. As much as she loved us, openly, unremittingly, it seemed as if Stephanie's ability to heal came from her being deep within herself, not from talkative friends or anything we could bring to her. All I wanted in the world was make her feel better, my presence was not helping, the way all the doctors before this one had wanted to help her, but just ended up hurting her more.
This one- this time, this doctor, this procedure- would be different.
We said goodbye, told her we hoped not to see her back at the hospital any time soon, stayed real positive, ra ra, and then drove home in silence. It was hard, but we were hopeful, you know? She was in the hands of the most competent, compassionate doctor on the planet. All she had to do now was lie quietly, for six weeks, and the nightmare could be over.
We were hopeful.
To catch up on her story (these will open in separate tabs: part1, part 2, part 3, part, 4, part 5
The neurologist passes her off to a neurosurgeon- another 4 week wait. The surgeon performs a myelogram, an injection of dye which courses through her column and illustrates where the leaks occurred. Her insurance company has by this time thrown up their hands- for an injury this rare, it seems as if all procedures are ‘experimental’. So she pays out of pocket for the myelogram, ten thousand dollars.
The myelogram is hell. Over and over she voices her fear, but the nurses and the radiologist only nod, instruct her to lie down. The neurosurgeon never even walks into the room. Instead, it is a medical student performs this enormously risk procedure- his first ever. As she lies on the silver table in the antiseptic room, shivering and clenching her teeth to hold still, she starts to give up a little. Starts to sink away a little bit, starts to give up. She can hear the radiologist hiss at the medical student- not there! Not there! Okay- Now inject- that’s too much! That’s too much!
Her modicum of comfort arises from the the presence of flouriscope- the radiologist can watch the entire path of the needle into her neck by way of x-ray. This technology was absent during the shot that caused the injury, all those months ago. She remembers thinking, well, at least this way if the needle misses, I’m going to be a paraplegic, not a quadriplegic.
What she doesn't know is that neither the radiologist or the medical student had even glanced at her charts. Nobody knows that this entire tragedy began with a faulty needle to the spine.
As she is wheeled out, a nurse whispers to her, "I'm sorry. I had no idea this was such a risky procedure." During the hours of recovery, the head of the department meets with Steph and her furious mother. The doctor sighs, rotates his wrists so that his palms face towards the sky. "Look, this is a teaching hospital. We should have told you that. This was a horrible procedure. I don’t know why they didn’t look at your charts. I don’t know why. But the good news, is that the procedure went off well. And we looked at your dies, and we didn’t find any leaks. You should be getting better any day now."
Yeah, any day now.
They tell her to stay down another day. She stays down for two- her practice now is to double the amount of time they advise her to lay flat. But on the third day she sits up- and her spine springs another leak- ( actually, another ten leaks, but how could they know that yet?). The headaches come barreling back, vision tunneling, throwing up over the toilet, and she is back to square one.
What follows is only natural. Crying jags that last for hours and hours, panic attacks, waking up at night to find she cannot breath. As the days pass with no answers, no improvements, the reality of her situation begins to sink in. She thinks to herself, I don't want to live like this anymore. She thinks to herself.
Look- I don't know how to write about this anymore. I can't do it justice in words, I'm not sure anybody could. I want to hurry and rush through these articles just to get to the end, to the happy ending. But the happy ending hasn't occurred. Not yet.
(Any day now....)
To catch up on this story: part 1, part 2, part 3, part 4
So she spends the days horizontal,beneath earplugs and eye masks and closed blinds. Doctors give no answers, only medicine that works only slightly. Her family strokes her hair and murmurs. They have moved into the second phase of inexplicable tragedy- something like hopelessness? Acceptance? Are those things mutually exclusive? These are my words, not theirs. They would object to them I'm sure. Steph said it was very peaceful. They had those conversations reserved for people who are leaving, and the people love them and have to watch them go. You and I can only imagine what was said during that time. Molly said if it's a girl, I'll name it after you.
It's her mother who first figures it out, not the doctors. Her mother is a physical therapist in Louisiana, and as her plane sinks down into the glittering Seattle skyline, she puts it together. You have a spinal leak, she tells her daughter. It's the only thing that makes sense.
As you know- her mother is right. (Mothers are always right.) When Steph is lying down, her brain is cushioned, splashing in its bath of cerebral spinal fluid, just like my brain is all of the time, regardless of what position I am in. Hopefully yours as well. But when she is upright, her spine is leaking fluid- pints of it. Her brain becomes dehydrated, and sinks lower and lower on her skull. It starts to hit upon the cranial nerves, which are better left un-touched, because of all the important things they do.
For example, the control of eyes, of ears, of memory. And a lot of other stuff as well.
Picture your delicate spine, the section in your neck that holds your head up. Reach out a hand and touch it- aren't you fond of it? Now picture yourself running a five-tinged salad fork against the dura- the layer surrounding your spine. Dura in latin means tough mother- as if your spine is wearing a bad ass leather jacket with spikes on the cuff. Four of the tinges puncture the dura, one nicks the spine.
Remember now, to be thankful that your spine is only nicked. If it was punctured- if the wrist administering the blow had twitched or pressed just a little bit harder- you'd be dead on the table. Or a quadriplegic. Either way, you'd wish you hadn't been messing with your spine at all.
Which I'm sure is what Steph is wishing right now. But anyway, now they know what's going on. Which is better than not knowing.
For the first part of this story click here
For the second part of the story, click here
What I did not know was this: while I was lost in my own head in West Virginia, Stephanie was doing an excellent impersonation of a dying person. She wasn't dying, technically, because she isn't dead. But for a time, she had everyone -herself included- fooled. She was lying on a bed, her vision gone, her family moving around her like shadows, speaking in whispers. She could not speak, she could not move, she couldn't see.
What I didn't know- what they didn't know- was that that her upper spinal chord had become porous- and as it leaked cerebral spinal fluid her brain sank lower and lower into her skull. She hadn't been in any sort of car accident. She wasn't sick. There had just been a huge, huge mistake.
June 13th, 2009, was fifteen days before I arrived at her doorway. She was lying on a table in a clinic in Seattle, receiving four injections into her neck. It was morning. Steph is a veteran of the Epic Mountain Bike Crash, and in the past few months, the accumulation of years of whiplash was catching up to her. She had been meeting with a body worker, who adjusted her and did all sorts of healing things to her spine. And it was working- but she couldn't afford it. She had to go in quite frequently for appointments, and her insurance wasn't covering it.
And so in mid June, she finally consented to the injections in her neck. The man working on her- a compassionate, wonderful person and healer- was really trying to help her out. This shot in her neck would relieve the pain, he said, and she would only have to come in once more afterward for a follow up.
And one day in early July she lay and received the four injections to neck. The sequence of what happened next I am not certain of, but they occurred in rapid fire succession. She blacked out. Her right leg went immediately and forever numb. She felt liquid coursing hot through her whole body. She was coated in cold sweat. She lay writhing on the table. It lasted an hour. Then she sat up, had some applesauce at the clinic, and drove herself home.
It was decided that Stephanie's body was allergic to the medicine.
And so there she was at home, on her beautiful floating house in Lake Union on a blue summer day in the emerald city. She wanted to shake it off and go on with her day- go to work, go the grocery store, cook dinner for her friends. But there were pains shooting like billiard balls through her body, knocking and splitting at her joints. A white hot pain was pulsating in her skull. She sat down, called her sister, her husband.
Immediately, they heard something in voice, something that spoke louder than the words she was actually saying. They are perceptive people, and her sister Molly works in medicine, a natureopath and licensed midwife. In fact, Molly, over nine months pregnant, was that very morning edging towards labor. On receiving Steph's call, her contractions ceased. She drove through the city to her sister's house, finds her wandering around incoherent, in shock, unable to find a modicum of relief from the splitting pain in her body. Molly takes her coat off, her unborn son gets the message he'll have to wait a little while longer. Steph lies with her head on Molly's lap. Molly doesn't leave her side for five days.
Can you picture them? This beautiful day, this beautiful woman, this young, healthy athlete. This adventure racer from Louisiana, and her body is exploding from the inside. The raging headache in her head continues to grow in fury, her vision fades out, her ears are ringing. She can't speak, she can't stop throwing up, she is wracked by spasms in her neck. They watch her with horror, split between their own fear and their efforts to be of comfort. The can speak to her, but only in whispers, anything louder feels like they are driving an axe full force between the left and right lobes of her brain. The pain cannot be overstated. The fear, as you can imagine, cannot accurately be tamed and shaped into words.
They call the doctor, who confirms the initial diagnosis- she must be allergic to the medicine. If she just waits it out, it will leave her system. Just wait it out, they say.
But- have you guessed it yet?- she only gets worse.
You can find the first part of this story here.
I was working as an English teacher for the New River Academy, and the quarter had just ended. It had been a really awful quarter for me and I was relieved it was finally over. In fact, the beginning of the summer I was pretty much worthless. I couldn’t do anything. I was just trying to recover from the past two months. Seeing as I was living in the house that, during the school year, served as the school campus, the recovery wasn’t going so well. What I needed was to be elsewhere.
I was half heartedly trying to get work as a video boater on the lower New. But the river was raging from some unexpected deluges upstate, and the American Whitewater charts I checked twice a day showed local river levels climbing unprecedentedly high. Despite the confidences given to my by David and my (very small) handful of friends, I knew I wasn't good enough to be paddling a high water New River gorge by myself.
In fact, the one time I did paddle the gorge only strengthened these convictions. I was with my friend Gilad. He was the last soldier to be wounded in the Israel Lebanon war, and he had a glass eye. I took a long swim above a dangerous sieve, and Gilad was screaming at me in Hebrew the whole time. I ended up washed up on the wrong side of the river. As I stood there shaking, I felt the anger and fear I had kept bottled up during the school year start to vibrate inside of me. I started to hate West Virginia.
As the light summer days flung by, I began to fantasize about Seattle- my old life, my old friends, my old neighborhoods. One image in particular crawled into my ear, sat down in my head and refused to leave. It was an image of myself showing up at my friends Steph and Ammen’s houseboat. I envisioned myself showing up unannounced, they wouldn't even know that I was in town. I would be holding a 5 dollar bouquet of flowers from Pike Place Market.
Out of all the lovely things to do in Seattle, of all the places and people in that city that I loved, it was this idea that stuck. Something was drawing me towards the doorway of that houseboat. It was like some invisible lasso looped around my rib cage, tugging me West. I needed to be out there.
I had no job in Seattle, a terrifically expensive city, and aside from a dozen friend's couches, I had no real place to live. I had to be back in West Virginia when school started up in the fall, so it didn't make any sense for me to go out to West.
But then one night I dreamt of being there, on the floating dock in front of their door, holding yellow flowers. I knocked on the door, anxious for Steph to open it, and then I woke up crying. Something about me you probably don't know, is that I don't cry very often. I can't cry very often. Ever since my doctor doubled my anxiety medication, it's been tough to gear up for that kind of emotional break.
That day I drove to Lewisburg to meet with an energy worker. (At that point I'd try anything to feel better- prescribed pharmaceuticals, energy healing, anything in between.) I lay on her table as she walked around me- a young, pretty woman with hands that moved quickly, pulling at invisible strings of energy. About five minutes into the session she paused, hands like held aloft like frozen birds. “Something is telling you to go somewhere." She told me. "I don't know where it is, but you do, and you have to go there."
Later that evening, I booked my ticket to Seattle.
Then there were years where she lived by the ocean with Ammen, still in Washington but a long ways away now. On college weekends I'd drive out and see her, in a borrowed car, alone or with the various boys who wove in and out of my life. We tramped through the woods in our rain jackets, picked mushrooms and cooked them, pushed through the tangled Northwest blackberry brambles down to hidden beaches on the Olympic Peninsula. She lived on an Indian Reservation; it was a wild place. The dogs that roamed the streets were known to eat other dogs. Her house was very quiet, the beach in Autumn was cold and hard.From time to time she'd come back into the city with Ammen. Ammen and I, back when I was his student and he my teacher, had been all over together- Mexico, New Zealand, Utah. When they'd visit, I'd ride the busses through town to find them- the 78 to the 44 to the restaurant in Ballard, trendy places where the drinks were rimmed with sugar and salt and served in funny glasses. I'd beg them to move to the city, but at the end of each weekend they'd drive away back to the Ocean with their tail lights glowing ruby in the endless drizzle.One day they asked me to paddle the Grand Canyon with them. The three of us flew to Vegas and drove through polygamous country in the back of a pickup truck. It was freezing rain outside, the roads were louge chutes and the river was a monster. When we arrived at the put-in and met up with the others on our trip, the river looked like it would kill us. And I suppose it almost did. That trip changed everything.
For the freezing month of February, we battled rapids one mile deep into the earth, drank whiskey in the evenings as we bandaged frostbitten fingers. Each day lilted past too beautiful, too exhausting to last. Our life spun on an axis which was the river, and our delicate existence upon it. The fear we felt each day as the holes opened up in the river would grow and grow until it reached a crescendo, but somehow the river didn't swallow us, and as evening grew we would melt into the precise rhythm of necessity and bliss of this strangest, most perfect, most arduous river life. Weeks went by. Shadows, rock, salt and bright angel shale flew past.Stephanie and Ammen were engaged, about to be married, and I was falling in love with Will- not an arabesquing free fall out of the sky in love, but a tripping and falling and hitting my head in love. And Steph picked me up and brushed me off over and over. She picked me up and brushed me off the night I got sick and threw up and the crows ate it. She did for me on a number of other strange occurances on that trip. And in between those times we washed our hair naked in the screaming cold Colorado. We chased sunshine paches on rocks like amphibians and held eachother into the raft as we plunged and shot through the enormous rapids.
And after that it was just normal life. We did every day things together, mostly sitting in their floating living room and eating food she cooked for us. Watching her cook I decided to go to nutrition school as she had. Friends came and went as easily as the breeze. Stephanie presented me with a birthday cake she made as I lay under the blankets on her couch fighting off a migraine.
Steph is the picture of health. She's rosy and red haired, as you can see. She's half smile and half shoulder muscles. She mountain bikes, kayaks, runs with wolves, you name it. She's just a hurricaine.
But the seasons blended from one to the other, and I decided to move on. I spent my last night in Seattle at the houseboat with just the two of them. We had lived there in Washington on and off for seven years.
And then what happened next.....happened. I'll write about it tomorrow.