“Put a marshmallow on it.” he told her. “I’m telling you, fish love the marshmallows. Helps ’em to see the bait underwater. Normally it’s hard for fish to see bait moving around, but the marshmallow gives ’em something they can fix their eye on and if they’re looking at the marshmallow, then they’re gonna be looking at the bait too. Once they see that bait, the fish can’t help but bite it. I’m telling you, you wrap one of them meal worms around a marshmallow and you’ll have more fish than you know what to do with. Here, let me see that hook a second.”
With one hand the man reached out and grabbed the girl’s fishing line while his other hand dipped down behind the rock he’d been sitting on, pulling out a tin of mealworms and a little jar of what looked like electric pink earplugs. The girl said nothing. Sometimes she looked at the man as he fussed about with her fishing pole, but mostly she just sat, staring straight ahead at an eddy that was swirling downriver.
“Now,” the man said, picking up a mealworm and an earplug, “what you do is, you take one of these here bait marshmallows and you wrap the mealworm around the marshmallow so’s you can stick both of ’em through the hook together, like this.”
What “like this” looked like was one of the fishing hook’s barbs piercing the lure’s slimy larval ring on one side before going through the marshmallow core and resurfacing on the other. With the bait set, the man handed the rod back to the girl and walked back up the worn cement steps to the parking lot where I was standing with the girl’s mother and stepfather. However, it soon became clear, even from as far back as we were standing, that she was having trouble with casting. Her manual dexterity and coordination weren’t fully developed yet, so her movements were jerky and tentative. They were the movements of a newborn fawn that’s still learning to walk, its limbs unwieldy and foreign. After watching her struggle for a minute or so, the stepfather looked over to his stepson further down the river and jerked his head upstream without saying a word, his teeth clenched around the end of a half-smoked backwoods cigar.
Without protest, the boy quickly reeled in his line and laid his fishing rod down on the dry creek rocks behind him before bounding over the small feeder stream that separated him from his sister. The boy took the rod from his sister and, with a pitcher’s windup, cast it as hard and as far as he could out into the creek before handing it back to her. The rod back in her hands, the girl started slowly and laboriously reeling the bait back to shore. Start and stop. Start and stop. With each thrust of her slender wrists the reel’s handle would lurch forward in little half and quarter rotations, the mealworm and the marshmallow inching towards her underneath the current. As the bait was almost all of the way reeled in, the hook managed to snag itself against a rather unsnaggable rock. Try as they might, neither the girl or her brother were able to make it budge, so the stepdad walked down to the water and worked a bit of magic on it, quickly freeing the line from the rock’s grasp, but leaving the hook, mealworm and marshmallow behind. It was late, the bait was gone and the girl was exhausted. It was time to go home.
From a distance, this tableau looks like a little slice of rural Americana. After all, what could be more American than going fishing with your family somewhere out in the wild green yonder on a Sunday afternoon and having a kindly stranger help a little girl bait her hook with something as simple as mealworms and marshmallows? It sounds like something taken right out of Mayberry or some Norman Rockwell painting, which is just as well considering the portrait I’ve painted bears as much resemblance to actual lived experience asThe Andy Griffith Show and those bucolic scenes on the front of The Saturday Evening Post did in their day. Just as Andy Griffith created a town in the middle of the Jim Crow South that never had to deal with race and Norman Rockwell portrayed an America that was almost exclusively white and middle class, I have given you a depiction that is little more than a fuzzy representation of reality. And, incredibly enough, all of the fuzziness attendant to the mise-en-scene I’ve provided for you is rooted in the choice of a single word: girl.
You see, the fact of the matter is that Kami—the little girl I described above—is not a little girl. She is a 22 year old woman. She knows how to bait a hook; how to cast a fishing rod. She’s done those things thousands of times before, but can’t now. Her body simply won’t let her since she suffered a series of small strokes last summer and developed a hemiparesis that has drained the muscles on the left side of her body of their vitality and dexterity. Kami isn’t learning how to fish. She’s re-learning how to fish while only using half of her body. Read the vignette again and everything that was cute is now cruel, the awkward stumblings of a young fawn replaced with the lame faltering of that fawn’s mother after being crippled by buckshot. Why it is her body won’t let her and why she had those strokes is a medical mystery that puzzles the world-class physicians at The Cleveland Clinic, but I can assure you that at least part of the explanation lies in the fact that Kami lives in Charleston, West Virginia.
If Kami’s name sounds familiar to you, it might be because I already wrote about her plight in an article I posted earlier this year on the very real effects that this past January’s chemical spill was having on the lives of more than 300,000 West Virginians in and around Charleston. Back then I had yet to actually meet Kami, but her mother Billinda provided me with a pretty extensive rundown of her health issues when I interviewed her for the story. To give you the Reader’s Digest version of what happened, Kami started exhibiting a wide variety of odd symptoms (nosebleeds, nausea, etc…) about 3 years ago after taking a job at the Charleston Town Center Mall, which happens to be about 2 miles down river from Freedom Industries, the company that rang in the new year by dumping more than 10,000 gallons worth of coal cleaning chemicals into the Kanawha River and, by extension, the water supply for parts of 9 West Virginia counties. During the time she worked at the mall, Kami grew more and more sickly until things finally came to a head this past September, when she was rushed from the mall to the Charleston Area Medical Center ER after a prolonged nosebleed and breathing difficulties gave way to a series of Transient Ischemic Attacks or “mini-strokes.”
Baffled at first by the sight of a fit young woman exhibiting the stroke-like symptoms of someone 3 or 4 times her age, Kami’s doctors initially tried to shuffle her out the door by diagnosing her with a “Conversion Disorder,” which is basically a way of telling someone that their symptoms aren’t the direct result of a physical malady, but rather are a physical manifestation of psychological turmoil. It also happens to be the medical profession’s shorthand for, “we don’t know what’s wrong with you, but still need a diagnosis so we can bill you for insurance purposes and get you out of our hospital.” It was only after several days of prodding from Billinda that Kami’s doctors eventually diagnosed her with Postural Orthostatic Tachycardia Syndrome or POTS, a form of autonomic dysfunction that causes blood to pool in the legs and leads to an abnormal jump in a person’s heart rate when moving from a supine position to an upright one. Fast forward 3 months and, after a few trips to the Cleveland Clinic, radioactive hemodynamic testing, CT scans, skin biopsies, autonomic sweat testing and countless blood draws, Kami’s family is no closer to discovery of the root cause of her symptoms.
Over those same 3 months, I gradually forgot about the injustices being carried out against the people of West Virginia. I forgot about the water crisis and the tens of thousands of people who still refused to drink the toxic, anisette-scented water that came through their faucets. I forgot about the need for stronger environmental legislation that protects our precious lakes and rivers from the deleterious byproducts of coal mining and fracking. It was easy for me to forget about these things because I don’t have to live with them on a daily basis and very few people outside of Appalachia are talking about them. When I turn my shower on, I don’t have to worry about the possibility that I might be inhaling formaldehyde or that my freshly cleansed skin might break out into a rash. When I open up my laptop, there is little danger that I might catch a story from a major domestic media outlet discussing the continuing fallout from the chemical spill because residents of the other 49 states in the union tend to think of West Virginia as little more than an afterthought, if they think about it at all. Tucked away in verdant heart of the Appalachian Mountains, West Virginia is out of sight and out of mind for the vast majority of Americans, a fact that has enabled the coal industry and all of the politicians they keep in their coat pockets to habitually screw over pretty much everyone that lives there without consequence.
But West Virginia was never fully out of my sight or out of mind. It couldn’t be because in those still moments of tinnitusine silence before sleep my thoughts would sometimes turn to Kami and to the severity and senselessness of her sickness. I would think of the shards of this young woman’s once vital life being rebuilt upon a foundation of hospital beds and blood pressure cuffs—of Jaegermeister shots and college graduations traded for shots filled with radioactive tracers and CT scans. Somehow, in listening to Billinda recount the Jobian details of her daughter’s suffering and in spending hour upon hour researching and writing about her condition, I had managed to develop survivor’s guilt for a young woman I had never met and who was not dead. It became clear to me that I needed to go back to Charleston, if no other reason than to reconcile the Kami of my mind with the Kami of reality.
When I contacted Billinda about meeting up again, she suggested we all go out fishing on account of the fact that her daughter had been wanting to fish for some time and, as Kami sardonically put it, fishing was “something the ‘crip’ could do” while sitting down and without triggering tachycardia. The next Sunday, I made the three and a half hour trek to Charleston from Cincinnati, eventually pulling off at the exit for the town of Chelyan, about 20 minutes southeast of the capitol. Billinda had told me to just park in the parking lot for a Shoney’s restaurant right off the exit. I was scared I might drive past the Shoney’s without seeing it, but soon found my fears to be unwarranted, as the Shoney’s was the only sit-down restaurant to be found. Billinda pulled in a few minutes after I did and told me to leave my car in the lot and drive down with her to Paint Creek where we’d meet the rest of her family. On the way there, she gave me an informal tour of the cluster of towns and unincorporated communities that line the Kanawha and New Rivers between Greater Charleston and Beckley, the gorgeous mountain roads punctuated every mile or so by cascading natural springs to the left and coal processing plants to the right.
It was after 5 o’clock when we finally arrived at the little park beside Paint Creek, but had somehow still managed to make it ahead of the rest of Billinda’s family, who showed up 15 minutes later in her husband Carl’s mammoth white pickup truck. Once they had parked, Carl slid out of the truck and went around to grab the grilling supplies while Alex, Billinda’s teenage son, helped his sister get out of the cab so she could begin walking the 100 or so feet between the truck and the small pavilion where we’d be sitting. With a wheelchair sitting in the truck bed as backup should she get too tired, Kami grasped onto the padded handle of her claw-footed quad cane and began the laborious task of moving forward, a few inches at a time. When Billinda first showed me still photographs of her daughter, it was hard to see much that suggested she was suffering from a chronic and debilitating illness. I had no such trouble now. Kami looked brittle and waifish, wrapped up in a thick cotton hoodie on a 70 degree day to keep warm the goose-pimpled flesh surrounding veins and arteries that had been working at half speed for the past 3 months. She was Benjamin Button in reverse; an octogenarian trapped inside the unwrinkled, blemish-free body of a 22-year old whose languorous movements made a mockery of her youth.
It took a couple minutes, but eventually she willed herself up the winding concrete walkway that led to the pavilion and the picnic benches that lay within. Exhausted, Kami sat down next to her brother and drank some of the Gatorade her mother brought along to help her stay hydrated, while Carl got the grill ready. Carl was a large man. Not fat, but large. Large in the sort of way World’s Strongest Man competitors were in the 1970s, with shoulders that were wider than a Buick and a spare tire to match. He was country strong; the type of guy you’d never describe to anyone as being “in-shape”, but who’d be first on the list of folks you’d want around if your child was trapped underneath a car or you needed to escape a psych ward by ripping a marble sink out of the ground and throwing it through a window. Once we got to talking, Carl told me that he hadn’t been able to get to the gym much since January on account of all the time he spent taking care of Kami and collecting the water that they needed to live, which was pretty remarkable considering the fact that one of his arms was about the size of one of my legs.
Aside from his girth and the laurel wreath of curly brown hair atop his head, the first thing about Carl that drew my attention was the small, holstered sidearm that he kept on his right hip. I didn’t want to come off as a clueless city-boy and ask him why he was carrying a handgun to go out fishing, but I also had a pretty tough time not looking at it. I mean, the thing was right there, in the open, for everybody to see and no one paid it any more mind than you or I would a guy with a Blackberry hooked to his belt. Carl was ex-military, which made me feel better about him open carrying, but that good feeling was tempered by the knowledge that he had been diagnosed with PTSD.
After we had gotten past the awkwardness of our sudden introduction, I got up the nerve to ask Carl about the gun by his side. His response wasn’t exactly what I was expecting:
“I don’t want to carry this thing.” he told me as he was unwrapping a few strip steaks to toss on the grill. “When I left the army, I didn’t have the desire to hold another gun as long as I lived.”
“What was it that changed your mind?” I asked.
Carl paused, then nodded at Billinda who continued Carl’s thought like he’d passed her a baton in a relay race. “He really didn’t want to be around guns anymore,” she said. “But, the next thing you know, this damned water crisis hits and the whole county turns into a war zone. It’s not safe around here…Not like it used to be.”
“How are things not safe?”
“Alex, tell Drew what happened at school the other day with the boy whose family had the storage tank.”
Alex’s eyes widened. “Yeah! There was this one kid in my class who showed up to school one day bragging about how his family had this big underwater storage tank set-up in their basement and all this stuff and when people found out about they broke into his house.”
“For what?” There was a pause. “For water?”
“For water,” Kami said. “People do some really crazy things around here for water.”
“It was the kid’s fault.” Alex chimed in.
“Wait, why was it the kid’s fault?” I asked.
Alex shook his head. “He shouldn’t have told anybody at school that his family had all that water.”
“Folks around here don’t talk out loud about whether or not they have water.” Kami told me.“Because if they do have water and people find out about there’s a good chance someone will try to steal it.”
“Folks are really that hard up for water?” I asked.
As I was talking, Carl came back from the grill to grab the baked potatoes, each of which was bought individually wrapped in plastic from out of state so they could be sure they hadn’t been washed with tainted local water. He pulled a Bowie knife from a leather sheath attached to his belt and had started peeling the plastic off the potatoes when he spoke.
“Let me tell you something. I lived in some pretty horrible places when I was in the military. I served in Afghanistan…in Iraq…in South America…and it was easier to get clean water in each of those places than it is here.”
“Hold up. You’re telling me it was easier to get clean water in the middle of the desert than it is to get clean water in West Virginia?”
“Yes sir.” Carl said as he wrapped one of the potatoes up in tin foil and walked over to put it on the grill. “And it’s been especially hard on us because Kami needs to stay hydrated on account of her condition.”
“We have to figure out at the beginning of every week exactly how much water we’re going to need and tailor our lives accordingly,” Billinda said. “Showers have become luxuries. I have to take them fairly regularly to get by at my job and Alex has to shower every couple days because we don’t want the school thinking we’re negligent parents or anything, but Kami doesn’t take showers too often nowadays and Carl…when was the last time you took a shower?”
“About a week ago.” Carl bellowed from where he was standing by the grill.
Kami reached over and took a sip of her gatorade. “Sometimes, I’ll try to cut back how much water I’m drinking. You know, because I feel like everybody else isn’t getting enough, but then I just really sick.”
“We’ve told her not to worry about us over and over again, but she won’t listen.” Billinda said.“Both Kami and her sister can be as stubborn as an ox.”
“Sister? I didn’t know Kami had a sister.”
“Yeah,” Kami said, her eyelids already starting to droop from exhaustion. “I’m the oldest, Alex is the youngest and Kayley is stuck in the middle. She moved up to Michigan back in 2012, but when she was living here in Charleston she had some of the same problems I’m having, only on a smaller scale.”
“The ironic thing is, Kayley had been having these sorts of issues for years before Kami got sick.” Belinda told me. “When we moved back here from Ohio in 2001—just after 9/11—Kayley started falling and tripping for no reason whatsoever. I think she broke a wrist, a finger and one of her legs before she’d even turned 10. That was about the point when she got a chronic UTI, along with kidney stones and issues with her reproductive system and all this was before she was even a teenager!”
“What happened after that?”
“Oh lord, it was a mess. The falling actually got worse, the reproductive system and UTI issues stuck around and, on top of all of that, she started getting arthritis and receptor damage in her hip and in her foot. She had her first syncope episode about 5 years ago and was diagnosed with POTS several months later.”
“You said Kayley was living in Michigan now?”
“She moved up there 2 years ago and she hasn’t had a major health problem since.” Kami said, stopping for a moment as a wan smile came across her face. “Well, she hadn’t had any until she came down to visit us.”
“Kami…it’s not funny.” Billinda squeaked out as she tried to stop herself from laughing. “Okay, maybe it was a little funny, but we didn’t think it was going to be that bad.”
“Didn’t think what was going to be that bad?” I asked.
“Well, we warned Kayley about the water a thousand times,” Billinda told me, “but she’d always forget about it. So, this one time Kayley drank some tea that had been made with tap water—which is twice as bad, because you’re bringing the water to a boil first and releasing more of the chemicals—and dear lord did she get sick.”
“She got really sick and then she threw up a bunch.” Alex said.
“Kayley also had a pretty bad rash that stayed with her for two weeks after she had gone home.” Billinda said. “All that because of a cup of tea.”
It was at about that time that Carl came back from the grill with steaks and taters in hand and set them down on the table. And then we ate. Or, Billinda, Alex and I ate. Kami tried to eat, but didn’t have the desire or energy to do so and Carl just leaned back on one of the wood posts that held the pavilion roof up, smoking the stub of his hand-rolled cigar and waiting for everyone to finish so he could devour his steak in peace after the kids had gone. Anxious to get fishing, but exhausted from all she had already done today, Kami sat on the picnic table bench with her legs balled up into her chest and her cotton hoodie pulled over her knees so it hugged her body like a tea cozy. For the most part she was quiet, but after we’d been silently chewing for a few minutes, she looked over at me and asked what the news coverage of the water crisis had been in the rest of the country over the last couple months. At first, I didn’t know what to say, so I didn’t say anything. Eventually I had to say something, but I didn’t want to. But I had to.
“There really hasn’t been any.” I told her. “There were a few stories when the spill first happened and a few more when Congress had the hearings on it, but since then…” I stopped. I had run out of words.
“Don’t people know that the water’s still poisoned here?” Kami asked. “That people still aren’t drinking it?”
“They don’t.” I said. “Or, if they do, they don’t care enough to do anything about it.”
Kami stayed silent after that. At least, until she made up her mind to go down to the creek and fish. By that point she was too weak to walk down with her cane, so she asked her brother to grab her wheelchair and wheel her down, which he did until they both got there and found out the creek wasn’t wheelchair accessible. Alex was about to try and wheel Kami backwards down the creek steps when Carl saw what he was doing and got up from his now cold steak to go and carry her there himself. It was while Carl was carrying Kami down to the creek that Billinda sat down on the bench beside me and started looking over at a pair of towheaded brothers who were playing hide and seek in a small stream that ran underneath Paint Creek Rd.
“Sometimes, I forget.” she said. “I forget what life was like before this…before the spill…before Kami got sick. I used to think about the way things were all time, but now…”Billinda paused. “I don’t have time for that now. There’s too much to do to have thoughts like that.”