The teak deck is damp and gritty against my face. The stars above are far away and beautiful. The sound of phaser fire drifts up from the cabin below and I try to imagine I am on the bridge of Enterprise, in the Star Trek episode we’d been watching, and not pinned to the deck of my own vessel, writhing in agony, waiting for the spasms to pass. I lean my head over the caprail and retch all the nothingness in my stomach out again. It feels like someone has ripped a small hole in the left side of me and is methodically pulling my intestines out and winding them tight around a razorwire bar. I hear Captain Archer put on his let’s-be-reasonable voice and wish violently he’d just beam me up already. I imagine that in those few seconds of dematerialization, there would be no pain. But what is pain, anyway? A temporary state. There is no rescue on the way. I focus on imagining myself further down my own timeline. To a time when this has passed.
Because this is not new. It happens again and again. This time, it’s been going on for maybe 5 and a half hours. Naturally, it’s in the middle of the night. In a foreign country. Doctor Phlox’s relentlessly cheerful voice wafts up from belowdecks. I wonder what miracles he’d have in his bag of interstellar tricks to fix a damaged nervous system. It’s been another 15 minutes, time to take stock again. I check my heart rate. Too fast and a little erratic, but still doable. My left side is only kind of functioning at this point. I try to breathe. My diaphragm spasms again. The world begins to go grey and an eternity passes until the spasm loosens for a minute. I sip ragged breaths and bang weakly on the cabintop. It’s time. If this goes much further, I’ll stop breathing. My heart will stop pumping. And that would really throw a monkey wrench in our plans to sail around the world.
In the spring of 2006, I worked part-time for a small powder coating company in San Luis Obispo, CA. People always ask me how I got hurt. Then they want to know why. The truth is, I don't know why. Could've been the argument I had with my boss about how to set up the batch of sewer pipe we were painting. Maybe it was his idea of a joke. All I know for certain, is at the end of that shoot, while I was holding up a 50lb piece of pipe for him to paint, he laughed, turned the powder gun on me and pulled the trigger. 95,000 V is no joke. You can't let go. You can't breathe. Your heart doesn't beat. Everything just...stops. He held me there for a couple of minutes, before he took his finger off the trigger, and in that small immensity of time my whole world changed.
At the first sound of my tap, my son Eli’s cabin door bangs open and he comes rushing through the mid-berth and up the companionway ladder as if he’d been waiting for that sound all night. Who am I kidding? He probably had his ear glued to the door this whole time. I don’t think his feet even touched the pilothouse floor. “We going?” he asks, worry all over his face. I nod and he shoots back down to start grabbing the stuff he’ll need. Steve rolls out of bed and into his clothes in one fluid movement, then starts chucking meds and shoes and doctor info into the backpack. “Still breathing?” he asks, trying to keep the worry off his face. I nod again and say,” Grab the Spanish for Cruisers guide and I’m going to the bathroom. Meet you up there.” His voice follows me as I clamber off the boat, “Stay in the middle of the dock!”
Middle of the dock. Breathe. Middle of the dock. Breathe. I stagger barefoot, like a drunk, down the dock and up onto dry land. Didn’t fall in the water. +10 points for me. Suck on that, stupid espasmo. Breathe. I take a minute and try to reason with the insanity that is my body gone rogue. I calm my mind. I try to calm the spasms in my abdomen. I imagine having control of the left side of my body again. Useless. I shrink my horizons to something that might actually be achievable and hobble into the Women’s restroom. For the next five minutes while we wait for a taxi to take us down the road to Velmar Hospital, I try and pee. Yup. You heard me. I tried to pee.
Alas, the same unauthorized spasm that illegally boarded my gut, my diaphragm, my stomach, and my esophagus, also got it’s filthy hands on my bladder. No peeing. So, the whole way to the hospital, I worry about my bladder bursting and accidentally peeing half a day’s worth of urine all over this nice guy’s cab, instead of concentrating on when the next breath will come.
But that pales in comparison to how I’m feeling a few minutes later, because after the cab that I have not peed in screeches up to the ER doors and Steve is occupied with paying the guy, I get the fabulously bright idea to go on in there RIGHT NOW and get this party started already. Eli’s hovering just off my starboard beam, trying to reason with the crazy lady, “Ummm, Mom, why don’t we wait for Dad and we can help you get inside, ok?” And I’m all, “Pffffttt! Hush child, do you not see that wall over there? I will use it to help me walk and I’ve got this covered and shit.” Does almost count? I’m thinking not.
We make our grand entrance and it must have been a doozy because the guy behind the counter pops right up out of his chair with a concerned look on his face. “Ayúdenme, por favor, ” I say. “Tengo muchos espasamos y–” and then the sadistic demon in my gut rakes his claws through my diaphragm again and I reach for the edge of the counter to steady myself. And miss. Spectacularly. I crumple down to the floor with all the grace and dignity of a flamingo with concrete ankle boots on. Niiice.
My husband’s horrified face swims into focus amidst the forest of people who’ve sprouted up around me. They reach down, gently enfold me in their arms and carry me away to a bed in the triage area. I pity the people who have to try and figure out the weirdness of a high voltage injury survivor after she collapses in the middle of their Emergency Room. Because I’m not stupid, I know what this looks like. I’m shaky and pale and staggering around. Sometimes I can’t even talk very well because the left side of my tongue’s gone completely numb, at which point there will be other attractive things happening, like drooling, for instance. And vomiting like a Hollywood starlet, two weeks before the Oscars, let’s not forget that. They look at me and immediately think, “Junkie.”
Here’s where things diverge radically between the health care I’ve received in the US vs. health care in Mexico.
The first time I had spasms like this we were totally clueless. And terrified. We went into a San Luis Obispo ER and I got treated for an upset tummy, which we now know works zero percent of the time. Sucked to be me, but hours and hours and half a day later, they finally came full circle and listened to what we told them in the first place– not the least bit nauseated, but throwing up regular as clockwork…history of chronic spasms, blah, blah, blah…nerve damage…maybe this is just another kind of spasm? In exasperation, they finally gave me a heavy duty muscle relaxant and within half an hour, the “stomach bug” or “withdrawals” they thought were going on had evaporated. Like magic. It was a big light bulb moment for us--less so for the docs.
The second time this happened, we wound up in the same ER and, thinking to save everybody a lot of time and misery, handed over the big three ring binder with all my medical records and research in it and said, “Look we know what’s going on. She has chronic spasms from an electrical injury. Last time they gave her a strong muscle relaxant and some pain meds and that broke the spasm. Can we do that this time?” They looked at us and were all, Riiiiiiiiiight. Then walked away for a while. A long while. Probably griping about us around the corner for telling them their jobs. I can understand that feeling but the thing is, while I don’t expect anybody to know what to do 100% of the time, I do expect them to gather all the relevant information and make a decision based on facts and experience.
Dealing with the long-term effects of a high voltage electrical injury is like putting together a puzzle with half the pieces missing and no picture on the box. There aren’t very many survivors wandering around and while many of us share similar problems, a lot of the time it’s just plain weird. A friend of mine who does therapeutic bodywork for people with spinal cord injuries once said, “Tamiko, this is crazy—do you realize you’ve got most of the same problems as a parapalegic…except for the part where you can still walk and move?” It is crazy. And outside the norm. But my expectation from the medical profession is that when I stagger in the door dragging all my extra weirdness with me, they won’t automatically discount what’s inside the big three ring binder I like to call, “Care and Feeding of the Electrically Challenged.”
When the US doctor finally made an appearance, he yelled at me for taking up valuable bed space in his ER. He assumed I was hooked on narcotics and looking for a fix. “Look,” I said, trying not to puke all over his tasseled loafers, “just test for the drugs you think I’m looking for. When it comes back negative, please, please, please….treat me for what’s actually happening.” In retrospect, I should’ve showered him in hurl. Because the tests did come back negative. Naturally. A long while later, they actually treated the spasm and then a short while later, we were on our way home. That doctor never apologized. In fact, he hid behind the nurses as we left the ER. No joke.
I’d like to say that guy was an isolated incident, but it was pretty much Standard Operating Procedure everywhere we went. In San Francisco or San Luis Obispo and all the way down the west coast–they all treated me like a drug addict and refused to consider that the actual problem might be a different sort of thing altogether. When their assumptions fell apart, they continued to act like I’d done something shameful, even as they administered the muscle relaxant and watched the spasm subside.
It’s been almost a year since I had a spasm attack bad enough to land me in the hospital. Curled sideways on my gurney in a Mexican ER, I think, “I’m doomed. How can this possibly work? I can’t even make the doctors understand what’s going on in my own language, let alone Spanish.”
A warm hand pats me reassuringly, “Hola, Señora. I am sorry you have troubles. I am Dr. Camacho. I speak some English. Can you tell me what is the problem?” We manage to Spanglish through it well enough, because when a Mexican tells you they speak only a little English, they mean to say, “I speak pretty damn good English.” “Ok,” he says, “I am giving you IV fluids, because you are dehydrated. This will help. And I am testing your blood for many things. Including drugs. I believe the things you say. They are reasonable. But I must test, because I would not be a good doctor if I did not make sure. While we wait, we will give you a small amount of muscle relaxant, to start.” He takes my hand and gives it a squeeze. “No worries, Señora, it will be ok.”
The waiting begins. I put my head through the railing and try to puke into the trashcan with a modicum of dignity. The spasms come so fast now, I’m lightheaded and it’s hard to breathe. More hands come to gently push my head back onto the gurney and straighten me out a little so they can take blood. “Lo siento, Señora,” the tech says as he slides the needle into my vein. “No hay problema,” I say, “No dolor.” I wish I could tell him that the left side of my body, which he’s currently drawing blood from, doesn’t have a lot of surface sensation. I think about the time I sat for 10 hours of tattooing on that side and most of the time it only kind of tickled.
And then I’m back on the gurney. There is a horrible keening moan coming out of my mouth and I think it just torpedoed my lifeboat. I look down, expecting to see fiery chunks of magnesium melting down through my left side, but there is only pale skin and a blue t-shirt. The spasm skitters across my diaphragm and all I get are short, spastic breaths. It’s not enough. While I was floating in my life raft, someone snaked an oxygen cannula across my face and the cool air bounces around my nose, hitching its way down toward my lungs in short increments. “Más despacio, Señora, respire más despacio,” the nurse says. But every time I try to breathe more slowly, a spasm kicks the air right back out. I keep trying. And making awful noises. Eli said later that he wasn’t sure if it was me or the pregnant lady in the bed next door making all the racket. I’d like to say it was her, but at this point, we all know that would be a lie.
The doctor comes back. “I am sorry you had to wait, I know it is hard. Some blood results came back. Thank you for being honest and patient. I can give you more muscle relaxant and something also for your pain. You should feel better soon. Rest now.” He smiles and then turns away. The nurse comes right over and begins carefully emptying several syringes into the IV port. Within 15 minutes, the spasm begins to loosen and my oxygen levels are good. It’s only been a couple of hours since we got here and I feel optimistic. This might be a record for shortest time ever in the ER. Things are looking so good that we even decide it’s time to go home. Silly us. What were we thinking?
They admitted me to Velmar Hospital that night and I woke up in the morning to find the ER doctor (who must never sleep), looming over the bed. “How are you feeling?” he said, “Better, I hope?” I nodded yes. “I spoke to Dr. Villagrana and read more about your type of injury.” He paused a minute, “We ran more tests on your blood and you are very low in potassium. I think that is why you were having such bad spasms. We are giving you potassium through the IV, but it must be slow and we have to watch over your heart. It will take several days.”
As it turns out, the electricity damaged a lot of things, including my gut. I can’t process gluten anymore and have a really hard time extracting things like potassium and B vitamins from my food. Gluten will trigger spasms and when I get too low on potassium, you guessed it, spasms start happening. The B vitamins don’t trigger spasms, but when I’m low, my nerve pain shoots through the roof. Both doctors advised me to keep my diet gluten-free and rich in potassium, calcium, and B vitamins. They also recommend supplements.
Seriously? Some random doctor, who just happened to be on duty at the closest hospital to Cruiseport Village Marina, put his head together with my local doctor here in Mexico and together they managed to solve a big piece of my medical weirdness puzzle. Overnight. This same puzzle my US doctors couldn’t be bothered to figure out in 6 years. And I got treated with kindness and respect. The US media would have you believe that Mexico is some kind of dangerous, backwater county, when the truth couldn’t be more opposite.
I’d say that my treatment at the hands of US doctors has been nothing short of barbaric. Time and again, they refused to treat me and when they didn’t already know the answers, would not reach out to other resources in search of something that would work. I never asked to be pain-free. I never expected miracles. I simply refused to give up on the idea that I could be more functional, participate more fully in what is, after all, my life. The only life I’ve got. Their idea of treatment was to put me on opiates and force me to go to a string of shrinks who were supposed to “help” me let go of that hope, and resign myself to my fate. Once I did that, they said, everything would be just fine.
They were wrong.
