Friday, November 25, 2011

50/50: Life is permanent remission


Patrick and I watched 50/50 today.

My immediate reaction was: Holy shit. I wish I could be more eloquent than that, but every now and then, you have an experience that leaves you in holy shit mode.

Watching this movie was like watching our lives—well, mainly like watching Patrick’s life.

One scene in particular struck home for him. Joseph Gordon-Levitt, sitting on the couch, bald, skinny, smoking, in his pajamas, watching The Colbert Report, the coffee table heaped with the accumulation of several days’ detritus.

Welcome to disability and its ugly twin, depression.

In the film, Joseph Gordon-Levitt plays a 27-year-old guy named Adam who is diagnosed with a rare form of spinal cancer. The movie is a great combination of unflinching honesty and humor (Seth Rogen plays his BFF).

I’d heard that the film had mostly gotten positive reviews—and after I watched it, I immediately checked it out on Rotten Tomatoes and found that it got a respectable 94% fresh rating. Reading through the reviews, I found that something the critics kept saying, however, was that the film struggled at times with maintaining a sense of realism.

Um . . . what?

First of all, the film is based on a true story.

I know, I know. Hollywood is not exactly famous for sticking to the facts. But the film was written by Will Reiser—based firsthand on his personal experiences with cancer when he was in his 20s.

Second of all, I’d like to reiterate that, as young people struggling with terminal illness, we found it to be spot-on—it’s almost uncanny. There was a point when Adam is in the hospital, getting prepped for surgery where we both just went, “Ohhhhhh.” It was too much like all the times we’ve been in the hospital.
From the moment Adam is diagnosed, we could relate from everything right down the line: uncaring doctors, a panicking mother, his swift deterioration, dealing with nausea, being the youngest patient in his chemo group, having people not know how to respond when you explain about his health problems, relying on our friends for support.

At one point, after he gets diagnosed, Adam’s office throws a party for him, “so they can celebrate Adam’s life.” It’s the most awkward thing ever. Just a few scenes earlier, the boss was being an utter dick to Adam and now, at the party, he’s hugging him, telling him how much he’s going to miss him. Oy. Patrick and I can relate to how people will completely change their tune when they find out you’re dealing with a massive illness, especially in the workplace. Suddenly, you have friends you didn’t even know you had—or wanted! Friends who hug! Isn’t it nice how facing death can bring people together!

Our favorite part was how the old men of the chemo group -- played awesomely by Matt Frewer and Phillip Baker Hall -- sort of adopted Adam, having bonding sessions over IVs and pot brownies, (Washington, where the film takes place, is a state where medicinal marijuana is legal). When Adam tells them he has neurofibroma sarcoma schwannoma, one of them knowingly says, “Ah. The more syllables, the worse it is.”
I think that these critics are basing the ‘lack of realism’ on their own experiences with illness and the medical establishment as older adults; they have no idea what it’s like to experience a terminal illness as a young adult—how surreal it can be, how alienating. The film perfectly depicts Adam as he wrestles with feelings of shock, helplessness and rage at his situation. In no time, he is like a middle-aged man living in a twentysomething’s body. Again, I can’t tell you how right this is. In my developmental psych class this semester, we just got through talking about how one of the characteristics of middle adulthood is the experiencing of stressful events. As one gets older, the likelihood of going through major catastrophes increases: accidents, illness, the death of a parent, financial crisis, etc.

For some of us, the reality check comes early. If you’re not careful, it can fuck you up good and proper. You can forget how to relate to everyone because you know that death is 100%, but nobody wants to hear that at a cocktail party-- and your mere presence reminds them of that. Fortunately, Adam’s doctor refers him to a therapist. She is, herself, only 24, working on a doctorate. Together, they muddle through Adam’s problems.

Patrick and I were faintly jealous that Adam had cancer—something for which millions of support groups exist. There aren’t support groups for young people with kidney disease. I still can’t get over my luck that I found a shrink in my neighborhood who happens to have a lot of experience with caregivers.

Something else that I kept seeing in the reviews is the abuse that gets heaped on Bryce Dallas Howard’s character. She plays Adam’s girlfriend who cheats on him. I had a lot of sympathy for her. It’s a tough gig, supporting someone through a major illness. It was interesting how the film chose to depict Adam’s mother (Anjelica Houston) as a caregiver—her husband, Adam’s father, had Alzheimer’s. The contrast between the two of them was not lost on me—Adam’s mother had clearly made her choice to stay. Adam’s girlfriend tried but couldn’t do it. Give her credit for that.

My shrink, as you might imagine, and I have had a lot of conversation about this. Why some people stay and why some don’t. Sometimes it’s not the ones you’d expect either—he’s known couples who’ve been married forty years who get divorced at a diagnosis of some terrible disease, while others who are engaged determinedly stick around through messy car accidents that leave their intended as paraplegics. I guess love has its reasons that reason knows not, eh?

But something my shrink has said about the people who do bail—we have to admire them for knowing themselves and their limitations. There is something to be said for that as well.

The film’s title comes from Adam’s chances of survival. What is unspoken throughout the film is how the chances of survival go up when we are surrounded by people who are rooting for us and supporting us and of course, keeping a sense of humor—even if those chances only go up infinitesimally.

I’m not a betting woman, but I’ll take those odds.

Sunday, November 13, 2011

Book & Bake Sale


I spent this weekend at Rockhurst helping prepare for the English Club’s annual Book & Bake Sale:

Nov. 14-18 (Mon-Fri), 9 a.m.-3 p.m.
Rockhurst University
Massman Hall
1100 Rockhurst Road
Kansas City, MO 64110

My friends and I sorted and hauled the books—and I have to tell you, you WANT to get down here this week. We have an awesome selection this year—not just books, but CDs, DVDs, and some records as well. In addition to the regular book sale, we plan on holding a silent on auction for some special items that we got in, like a Bob Dylan biography that comes with a CD and memorabilia. We also got a 75-year NFL anniversary book, some beautiful coffee table books, a few boxed sets, and a great selection of children’s books.

In addition to the usual donations we get from faculty, students, and the community, we got a donation from Andrews McMeel Publishing, courtesy of Mr. Lee Salem. They donated 28 boxes of very fine books that are like new—including a variety of popular titles in fiction and nonfiction, hardbound and paperbacks.

And, to sweeten the deal, there will be confection. Lots and lots of confection. Students and faculty are providing baked goods every day. For those of you who’ve never had Patrick’s or my baked goods—you need to come down, because we'll be contributing cinnamon rolls and giant chocolate chip cookies.



The proceeds from the sale will help fund the International English Honor Society activities, such as our upcoming trip to the annual convention, which will be in New Orleans this year. Five students, including myself, have submitted papers for panel consideration. The English Honor Society and English Club are committed to promoting literacy.

What we don’t sell at the end of the week will be donated to Better World Books, a fantastic organization that is dedicated not only to literacy, but saving books from landfills, creating jobs, and providing books to millions of people worldwide.

So. This Book & Bake Sale helps all kinds of good causes. Come be a part of it. You get to enjoy our pretty campus. Have a pastry. Read a book.

You’ll be glad you did.

Saturday, October 22, 2011

Happy Halloween!


I finally got the MP3 for my portion of the audiobook-- just in time for Halloween/Dia de los Muertos. It's available here for free download through 4shared, or you can just listen to it here:



The story is entitled, "La Tutayegua." Hope you get to listen & enjoy.

Thanks again to Byron Gilman for editing & recording.

Sunday, September 11, 2011

Guts, guts, got no guts and stitches don’t help at all

As I begin this blog post, I’m sitting in yet another waiting room of yet another hospital—this time, Heartland Spine & Specialty Hospital, in Overland Park, KS. I have been here all day, and even finished all my homework for the weekend, waiting as Patrick undergoes surgery for bilateral hernias.
In some ways, I think this has been one of the most uncomfortable, inconvenient healthcare experiences I’ve ever had, and that’s saying something, especially when you consider I spent a fairish amount of time in Truman Medical Centers’ charity wards in the 80s.
However, the hassle began well before we set foot on these premises.
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It started back in July, when we discovered that Patrick had hernias. As I mentioned in a previous post, this is a common complication for peritoneal dialysis. The treatments erode the peritoneal cavity until it eventually gives out altogether. The maximum one can expect to do PD is ten years. We’re hoping to have a kidney before then, of course.
Our primary care doctor gave us a list of referrals for surgery and we began going down the list. We had to go through three surgeons before we found one who could perform the operation relatively soon (less than a month out). There is some urgency because the longer we let it go, the more risk it poses in dislodging Patrick’s dialysis catheter; more importantly, it could interfere with transplant surgery.
We specifically asked if the hernia operation would be at Research Hospital—where the renal ward and transplant center is located. The surgeon assured us that it was.
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Yet here we are. After the consultation, the doctor’s scheduler informed us that it would not be at Research as this was an outpatient procedure, and all outpatient procedures are performed at Heartland.
I’d never even heard of this damn place. We are incredibly nervous about doing the surgery somewhere without a trained dialysis unit.
The last time Patrick had surgery was his catheter placement back in 2009. He wound up with an infection that put him in the hospital for a month. You can understand our trepidation.
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Then, on Thursday, the day before surgery, Patrick’s nephrologist called to inform him that she strongly recommended that he go on hemo dialysis while he heals up from surgery, which would mean putting in a temporary neck catheter.
Really, doc? Just . . . really? You’re really calling and springing this on us THE DAY BEFORE THE SURGERY?
First of all, thanks for giving us ample time to consider this and make an informed decision.
Second, Patrick’s had a neck catheter before. It’s as awful as it sounds. Third, hemo sucks. And finally, it would be a logistical nightmare, as hemo would mean going to the dialysis clinic three times a week and we only have one car.
So thanks, doc, but no thanks. Pass on the neck tube.
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On Friday morning, we arrived at the hospital. The receptionist handed me a pager—like one of those light-up pagers the hostess would give you at Outback Steakhouse. They were going to take Patrick up to prep for surgery, then page me to notify me when I could go up to see him, page me when he woke up in recovery, etc. I was like, are you fucking kidding me?
The waiting room was crowded and filled with the most uncomfortable chairs I’ve ever seen—except those fiberglass chairs from the 70s that were bolted together in rows at Truman. Ah, memories.
What I’m trying to say is, I hated the place. I hated the place instantly, deeply, passionately. Even more than I hate most medical establishments. My therapist has helped me to recognize that my default emotion is rage and that is not healthy, but dude-- a PAGER? I am not waiting for a booth so I can order a margarita and a bloomin’ onion here.
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As I waited, I went to the dining area over lunch, where I found out they only accepted cash. The cafeteria ladies took pity on me and gave me a free meal. Just when you think that a situation is irredeemable.
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After weeks of fretting and difficulty, though, the operation itself went perfectly. The surgeon told me he closed the dual incisions with cosmetic stitches, adding proudly, “When he heals up, he could model swim trunks if he wants.”
We’re home now, though I’m sorry to say that Patrick’s in a great deal of pain. He needs assistance getting up and can’t bend down at all, so I have to help him to the bathroom, fix him his meals, help him hook up to the dialysis machine, etc. He’s also sleeping a lot, and recovery looks like it’s going to be a long, slow road. I’m not sure at this point if I’ll be back at the office Monday.
So. Nothing to do but chin up and remember to be grateful for the tuna sandwiches of compassion.

Monday, September 5, 2011

Don't be Afraid of the Dark


Where there is no imagination, there is no horror.
–Sir Arthur Conan Doyle

Now that Labor Day weekend is here and summer is officially at an end, I find myself getting nostalgic for horror films—not because Halloween is just around the corner, but because I regret I never have enough time to watch as many horror flicks as I want over the summer months.

More than fall, I associate summer with monsters and madmen and things that go bump in the night. Though as far as movies and stuff go, I got in a pretty good haul this year. Most importantly, I got to write several things that had horror elements, and that’s even better. Coyote and I got a lot done on the O4S series of course, and this week, I just finished a short story entitled, “La Tutayegua,” which was a good old-fashioned horror story, with a terrifying creature, children in peril, and a bloody, tragic ending.

Over the summer, I revisited Poltergeist (1982) and Monkey Shines (1988). I watched a newer film, Let Me In (2010), the American remake of Let the Right One In (2008), which was originally a Swedish tale about a tween vampire that falls in love with a mortal, but it’s so much better than Twilight I can’t even tell you. The two young leads in the original generate more chemistry in a single glance than Robert Pattison and Kristen Stewart could ever hope to spark in a lifetime, even though they’re like 12 and never even share an onscreen kiss. It’s amazing. See it. The American remake stars Chloe Moretz as the vampire, (the actress who played Hit Girl in Kick-Ass). It was well-done, but not as good as its European predecessor because, in my opinion, the chemistry between the two actors was something special—it’s just not something you can replicate.

This past week, I watched Apollo 18 in the theater—terrible! -- but the one I was really excited about was Don’t be Afraid of the Dark.

I was beyond thrilled when I heard last fall that Guillermo del Toro was going to be producing an updated version of the 1973 made-for-TV movie. I saw it when I was seven or eight years old. del Toro describes it as the scariest film he’s ever seen, and I am inclined to agree—it gave me nightmares for years afterwards.

del Toro’s genius as a director and an artist has been enumerated by others, so I won’t go all fan girl on you here and wax poetical about why he’s on my list of people I’d love to work with someday. But oddly, our shared terror of the creatures of Don’t be Afraid of the Dark makes me feel a strange affinity, indeed, a camaraderie with del Toro that’s even more powerful than the Mexican-Catholic connection. It’s funny what a strong bond a little terror can inspire.


So, of course, over this summer, I made time to rewatch Pan’s Labyrinth (2006), widely regarded as del Toro's masterpiece, and another one of my favorite films. But I would like to point out that I loved Guillermo long before most people jumped on the sexy Mexican train de amor, mostly because I happen to love Spanish cinema—I was a big fan of the forerunner to Pan's Labyrinth, La Espinoza del Diablo, (The Devil’s Backbone, 2001). I also saw Cronos (1993), del Toro’s first film, which contains so many elements that have become his trademarks—children, clocks, magic, the fantastic and phantasmagoric.

I re-watched the original Don’t be Afraid of the Dark this summer because, well, it’s been over 20 years, and I thought a refresher was in order. But some things had been burned indelibly into my memory.

For example, time had not exaggerated how very scary the little goblin-like creatures were. Having grown up in the 80s, there was a whole slew of films with pint-sized horror critters—Gremlins, Critters, Chucky, Puppet Master, the thing in Trilogy of Terror, and too many other demonic dolls and evil puppets to recall. There was a vignette in Cat’s Eye where some sort of demon came out of the wall and terrorized a young Drew Barrymore that particularly traumatized me. I don’t know why I always found small monsters scarier than big ones but I did and do.

I mean, look at these things. What’s not to be afraid of?



In the original Don’t be Afraid of the Dark, I also remembered their creepy little voices, calling for the main character, named Sally, (played by Kim Darby—Katie Holmes’ character in the remake is named Kim, obviously a nod to Ms. Darby). I remembered that light could hurt the creatures, and I remembered one particularly horrifying scene in which Sally was in the shower, and they came out of the bathroom cabinet and tried to cut her with a straight razor. Yeesh.

While the update of the film, regretfully, was not directed by del Toro—just produced by him, his fingerprints are all over it, stylistically-speaking-- the creatures themselves, the set pieces, the camera work. As the film started, I found myself expecting the characters to speak Spanish just because del Toro’s name had been splashed all over everything. It threw me for a second when they didn’t.

Overall, I was very pleased with the changes to the story. Aside from adding a back story that explained the origin of the creatures in the house, and shifting the protagonist from a young newlywed to a little girl, (which I thought was a wise move), it was very faithful to the original film—even down to the last line of dialogue, which pleased me to no end. One of the things that was so powerful about the original film was its dire ending—especially gutsy in an American movie. Unfortunately, being faithful the original movie meant that the remake suffered the same flaws—which are the same flaws suffered by most haunted house films. Namely, if a house is full of dangerous creatures that are trying to kill you, why the hell would you stay? And if you are being plagued by a bunch of critters the size of squirrels, why would you not pick up, I dunno, a golf club, and start wailin’ away?

If you suspend disbelief however, it’s still a damn scary movie. The prologue of the new film takes place in the late 19th/early 20th century, and features a sequence so gruesome, I’m sure that I bruised Patrick’s arm from gripping it so tightly.


How can I explain my deep and abiding love for all things horror? To begin with, my parents did not censor any of my reading or viewing materials. At all. So I grew up on a steady diet of horror and suspense—fed on Friday Fright Night and Saturday Nightmares on cable, Tales from the Crypt, Garbage Pail Kids, 80s slasher flicks, Scary Stories to Tell in the Dark, Unsolved Mysteries, reruns of The Twilight Zone and Alfred Hitchcock Presents, and even Nickelodeon’s Are You Afraid of the Dark? I loved all of it—watched all of it—devoured all of it. Not to mention the surrealist music videos that filled MTV, the innovative claymation and animated shorts on Nickelodeon, and short films on premium cable stations back in the day, like this one:





Freaky.

As I got older, I got more highbrow—I began reading Lovecraft and Edgar Allan Poe. As soon as I could, I got my greedy little paws on Stephen King and Anne Rice novels.

But I never strayed far from my roots-- the stories we heard as kids about ghosts and ghoulies and madness in our own neighborhood.

A well-known Mexican folk tale is that of La Llorona, which means “the weeping woman,” about whom songs are sung. Kansas City’s West Side, with its large Mexican population, even has its own variation on the legend. The basic story is that a woman with children falls in love with a man who rejects her on the pretext that she has children. She drowns her children in a river in order to be with him, but he rejects her anyway. (“It’s not you, baby, it’s me.”) So she kills herself. When she arrives at the Gates of Heaven, (or Hell, depending on the version), St. Peter (or the Devil) asks her where her children are. She says she doesn’t know. So her spirit is sent back to earth to search for them. She’s used as a cautionary tale—bad children are told that if they don’t do as they are told, La Llorona will get them. You can hear her at night, weeping and calling for her children.

Obviously, in Kansas City, she drowns her children in the Missouri/Kansas river, and she haunts the West Bottoms. In the article I've linked to, you’ll notice the variation where she is cursed to have a horse’s head, which helped inspire the story I wrote this week. I first heard the story of the horse-headed woman from my cousin right around the same time that I first saw Don't be Afraid of the Dark. Scared me out of my wits, as did the tale of La Llorona. It's really amazing that I ever slept at all as a child.

I conceived of the character, La Tutayegua, the Horse Lady, several years ago, a creature with the body of a woman and the head of a mare who haunts the West Bottoms. I knew I was onto something when it gave me such a terrible nightmare that Patrick actually had to wake me up because I was whimpering in my sleep.

Another superstition I grew up hearing was from my great-grandmother—she believed that Death could not come into the light, which is, of course, ridiculous. But her whole life, she slept with a night light. Related to that were all sorts of strange premonitions of death—a widowed neighbor lady began having strange disturbances at night. She thought she was being bothered by a would-be burglar, so she asked my great-grandfather to install a porch light for her. One night, she turned it on, and was terrified to see that the person on her porch was her dead husband. She died a few days later.

In a similar incident, my grandmother swore she saw a strange black shadow appear on the porch of another neighbor’s house. The next day, the neighbor woman was found dead in her house—a suicide, an overdose of sleeping pills. (I do remember when that happened—I remember the ambulance coming to take her body away. The woman’s name was Rosa.)

There was the tale of a relation of ours who believed she saw the devil in an outhouse one day. This would have been back in about 1928. The funny thing is, if you’ve ever read Stephen King’s O. Henry award-winning short story, “The Man in Black,” my relative’s description of the devil matches King’s description almost exactly. That poor woman, over the course of her life, became dangerously insane and spent her later years in the state hospital in St. Joseph—but of course, the question is, did she see the devil because she was insane, or did she go insane because she saw the devil?

For me, one of the scarier stories I heard growing up was about a house on Belleview Street, off of what is now Avenida Cesar Chavez. The house is long-gone. In its place is now the Guadalupe Center. The house that was there belonged to friends of my great-grandparents. In the house was an upstairs bedroom that was haunted by some mysterious entity. Supposedly, if you slept in one of the beds, this strange, invisible force would drag you out of bed and haul you down the stairs, into the garden and deposit you there—always in the same spot. My great-grandfather swore he saw that with his own eyes, and he was one of the most skeptical people I’ve ever known. I asked them if it had ever occurred to anyone to dig up the spot where the force or spirit was depositing them. Well, no—this was well before the days of Ghost Hunters or paranormal societies. And now we can’t—the spot has been paved over to make a basketball court.

I associate horror with summer because I watched horror films at my grandmother and great-grandmother's houses-- we never had cable when I was growing up, but they did. We spent the majority of our time at their houses in the summer. They were also the ones who told us more spooky stories than I can count.

The horror genre is one of the key reasons I am a writer today. Someone asked me recently why I’m a writer, and I gave my usual answer—that I never outgrew my love of fairy tales, of nursery rhymes and make-believe, and that’s a part of it. But fairy tales have but to hang a left and then they become horror stories—big bad wolves, ogres, witches, trolls.

Guillermo del Toro knows this. Check out the tagline for the new Don’t be Afraid of the Dark film:

"Fear is never just make believe."

The imagination has teeth.

Sunday, August 14, 2011

The Poetic Life Aquatic

So Coyote and I actually interrupted our usual Friday write night to attend a poetry reading.

Apparently this poetry gathering has been going on in the KC area for over 14 years, with a standing, open invite to the writing community. The original host was unable to continue running the show for some reason, so the torch has been passed to a pair of roommates. This Friday was the first time at the new venue, an uber-hip apartment with a spectacular 9th floor deck overlooking Midtown, clouded with cigar smoke.

Like most poetry readings, quite a motley crew had assembled: a stocky guy with a long red beard wearing a pendant shaped like a double-bladed axe that looked like he would have been right at home in a kilt-- Coyote swore he’d met him somewhere before. (“At the Ren Fest?” I supplied dryly.) Standoffish lesbians in matching Converse sneakers. A hipster with a fedora on his head and spools in his ears. Some regular joes. A guy in black. A hippie couple with an adorable baby. The reading started at midnight, so more people milled in and out closer to then.

There was an exposed brick wall on the balcony, with a painting of an octopus with a human brain. Inside the apartment was a painting of a bug-eyed fish that also had a large, throbbing pink brain.

“Aquatic creatures with brains,” I mused at one point. “I get it now. It’s like, a theme.” And promptly burst into giggles. It’s possible that I was a little inebriated by then.

“Maybe you should have some water,” Coyote suggested.

I followed him into the kitchen. “Dude. It’s kind of amazing that I can walk right now.” My own little pink brain was spinning, dancing an Esther Williams number in a bath of cerebrospinal fluids.

I’ll tell you what else was amazing. When midnight rolled around and it came time to actually stand up and share poetry, that strange and disparate group became a single organism, shifting and flowing into itself. It didn’t matter how fucked up anyone had been before. It dissipated. Because there is no intoxication like the intoxication of words once they start coming, washing everything else away.

There were only about eight of us who actually stood up and performed, and, as usual, I am humbled and blown away by the enormity of talent in our little corner of the Midwest.

I really liked the format of the reading, too. We read for about forty-five minutes, then the lights go off and people stand up and recite from memory only.

One of the poets read, “I Wanna Love Ya,” by comedian/slam poet Shane Hawley—a beautiful, hilarious piece that I instantly wanted to read to Patrick.


Sunday, July 31, 2011

Lessons on Being a Caregiver

I had to take Patrick to the ER today—or, as Patrick put it, we “graced the ER with our presence.”


It has been nine months, after all. Not since last October.


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I picked a hell of a week to go off Xanax. It was a hell of a week, period: finished out my two summer classes. Finished out two major projects at the office. Triple-digit temperatures. I’ve eaten my way through an entire box of heavy-duty migraine medication—a direct result of said triple-digit temperatures. The heat is cooking my poor brain in its skull like a poached egg.


Worst of all, I had a full-blown panic attack on Wednesday night, the last night of Utopian & Anti-Utopian Lit class.


Like a lot of classes, those of us with a high enough grade were exempt from taking the final. Instead, we got to watch a film, Never Let Me Go. So we brought snacks and settled in to watch the movie and have a discussion about it afterwards.


Never Let Me Go is a crushingly depressing film set in a dystopian, alternate world.  It focuses on three children growing up in what appears to an orphanage/boarding school in the English countryside. But you get the sense early in the film that something is off. Gradually, it is revealed that these children were cloned and grown specifically to be organ donors. They will donate organs until they are dead. It seems that none of them live to see forty. Perhaps not even thirty-five.


I had seen the film before—seen it, and read the book by Kazuo Ishiguro. Therefore nothing in it should have come as any big shock.


Yet about two-thirds of the way through the film, when the main character, Kathy, played by Carey Mulligan, opts to become a caregiver – someone who takes care of her fellow organ donors expressly for the purpose of improving their quality of life – and she goes to visit one of them in the hospital, it felt like someone kicked me squarely in the stomach.


Starting to hyperventilate, I clapped my hands over my mouth to cover up the gasping sounds I was making, got up, and walked quickly out of the room, tears streaming down my face, shaking so hard I wasn’t sure I was going to make it out to the bench around the corner in the hallway—somewhere safely out of earshot so I could break down utterly.


And I knew. It was the hospital setting. The machines. The IV pole. The needles. The bandages. The sight of a person in a hospital bed. An organ donor. The young woman standing beside the bed, bringing cookies, reading aloud from a book, being a caregiver.  Death—especially the idea that someone has to die in order so that someone else’s quality of life may be improved. It was all of those things that triggered the response.


It took me a good ten minutes to pull myself together. I made myself get up and watch the rest of it. I can’t fall apart at the sight of hospitals. I can’t. Sooner or later, I told myself sternly, you will have to go back to one. It’s not a question.


The next day, at work, I had to participate in a tour of our Health Science Institute. Even though I work at MCC, I’ve never actually been around the Institute except to visit its administrative offices, where my boss works. I was aware that it had stuff like a human-patient simulator lab and a virtual hospital, complete with dummies that emulate physiological responses. But I didn’t think about it until we walked into the rooms and I started to feel a bit faint.


“Are you okay?” my boss asked. “You look like you don’t feel well.”


I shook my head. “Just the heat.” And I made it through the tour.


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So why such a dramatic response? Well, I’ve been seeing a therapist for a little over a month now. I was very fortunate to find a therapist who specializes in adult caregivers, and is, himself, a caregiver—his wife has MS. After hashing out the usual stuff – my own medical history, childhood, etc. -- we’ve just now started getting to the subject of my being a caregiver and what that means.


All this time, I thought I was bad at it. I remember the first time someone called me a caregiver. It made me shift uncomfortably in my chair. I didn’t like it. Then there’s this guy I work with who is, himself, handicapped. Every time he sees me, he takes my hands in his and positively gushes, “Your husband is so lucky, so blessed to have a wife like you—to have someone who sticks by him. I hope he knows that. God bless you.” And I stand there uncomfortably, nodding and thinking, You’re wrong. You’re wrong.


I thought that being a caregiver was something that you’re either good at or you’re not—that it comes naturally, like being able to sing. I forgot that even singers have to practice and rehearse.


And because I thought I was bad at it, I thought I was a horrible person. But that wasn’t it at all. I was confusing having negative thoughts and feelings, which are perfectly normal, with being a bad person. I knew my feelings were normal – anger, resentment, bitterness, guilt, etc. – but knowing that you’re having normal feelings in the abstract is one thing.


Looking at your ill spouse and thinking, I hate you is quite another. And then hearing what a great person you are for sticking around when, in actuality, all you can think about is leaving—well, guilt is a slow poison. It’s more insidious than rage or despair, cuts deeper than depression, leaves runnels in the soul. And, O my brothers, I cracked.


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My therapist had me list all the things I’ve done (and continue to do) for Patrick since Patrick got sick, and I hadn’t realized how much it amounted to. All the little things. All the big things—including the fact that I do stay.

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A few days ago, Patrick noticed a bulge just above his groin, low, on his right side. Hernias are common in PD patients—the treatments eventually just wear out the abdominal walls. There were a few other possibilities, like a dislodged catheter, or a build-up of dialysate fluid.


I don’t know why he waited till Saturday to tell me. But as soon as he did and showed me what was wrong, I said we should go to the ER. I’m not even going to fuck around with funny lumps in the abdominal/pelvic region. (The sentences you end up typing in your life!) Any of these problems could jeopardize his catheter site. If there’s a problem with his catheter site, that could potentially mean he’d have to quit PD treatments and go on hemo, and neither of us want that—it would mean a substantial decrease in quality of life.


Patrick didn’t want to go to go to the ER, of course. “What am I gonna say?” he asked. “Hi, please check out the bulge in my pants?” He didn’t think this was urgent enough; he has a clinic appointment on Tuesday. I didn’t think it was something we should let wait, and I said if we called up his doctor, she’d agree with me.


So we packed our bags. Patrick downed a protein shake because who knew when he might get to eat again, especially if he ended up needing surgery.


“I’ll go start the car,” he said when he was done.


“I’ll drive,” I protested.


“I feel well enough to drive,” he said unanswerably. “If it’s all the same to you, I’d rather not wreck, what with you having panic attacks at the sight of hospital stuff and all.”


Ouch. And point.


Our ER-visiting skills were only slightly rusty—the only thing we forgot was to print off a copy of Patrick’s updated medication list. Otherwise, it was pretty par for the course. You can imagine what the ER waiting room might be like on a hot Saturday afternoon at Research Hospital. Two of our favorite ER docs were on the floor, Dr. Richards and Dr. Shanks—Patrick was seen by the latter.


I had called Coyote before we left. He immediately offered to come sit with us. I told him not to, because I wasn’t sure how long this would take, or if Patrick would be admitted or not. But after we’d been at the hospital for several hours, I started to get very hungry. So when Coyote called me for news, I took him up on his offer to bring me food.


Less than five minutes after that, Dr. Shanks came in to see Patrick and pronounced that Patrick did, in fact, have a hernia, but we’d caught it early and it was in no way interfering with his catheter. She said to follow up on Monday with his regular doctor to arrange surgery to get it taken care of. Patrick was dressed and released ten minutes after that.


I tried to call Coyote to tell him to cancel the cheeseburger order, but I couldn’t reach him. So we gave up and went home.


No sooner had we arrived at home, then Coyote called me from the phone in the hospital waiting room. Coyote, being Coyote, wasn’t upset about the mix-up—just glad that Patrick had been released.


“Yes, we apologize for the efficiency of the hospital staff,” Patrick shouted to Coyote from the other room. “Who could have foreseen that?”


---


So here’s what I’ve learned about being a caregiver (in no particular order):


1. Being a caregiver is not an inborn talent. Looking back at my “Hanging Blood” piece where I said I wasn’t a caregiver, I have learned that maybe nobody is. No, I’m not a mother. Maybe there’s no such thing as maternal instinct, either. Look at Casey Anthony. No, I don’t necessarily think that she killed her child. But she was, indisputably, a crappy mother. Maybe there are people who have a knack for it. And then there are the rest of us, who have to learn how the hell you do this.


2. This illness is happening to both of you. This is something my therapist said to me and I’ve thought it over. At first, I thought it was stupid, like those couples who insist on saying, “We’re pregnant.” I used to be like, whatever. But it’s true. From a practical standpoint, of course, an illness of this magnitude is devastating. The first time you open a five-figure medical bill, you go a little dizzy. Both your names are attached to the mortgage and the credit rating. We have been watching the news breathlessly, wondering how Congress is going to come down on the debt issue because it will affect whether we – not he, we – will continue to receive little niceties like disability, Medicare and student loan benefits.


From a more personal standpoint, I’m sure this varies from couple to couple. In my experience, his pain is worse than my own. I have to turn my face away when they so much as come in to run the IV line.


3. BE KIND TO YOURSELF. I could tattoo it on the inside of my arm. This week, the therapist said to me, “I’m starting to get the sense that you hold yourself to some . . . really high standards in every aspect of your life—personally, academically, professionally. . .”


Me: “. . . Yeah. ”


I think there's something to be said about accepting your limitations. I don't know. I’m still working on this one.


4. Finally, I have learned that I am one. A very, very good one.


There. I said it.

Monday, July 18, 2011

Carcosa!


I am pleased to announce that after two years, Coyote and I have finally released Carcosa, the second book of The Order of the Four Sons series on Amazon. It is now available to download directly to your Kindle, iPod or iPhone.

NOTE: You don’t actually need a Kindle or any other kind of e-reader device to actually be able to download e-books from Amazon.

Let me say that again, because I actually get asked this a lot: YOU DON’T ACTUALLY NEED A KINDLE OR ANY OTHER KIND OF READER DEVICE TO BE ABLE TO DOWNLOAD E-BOOKS FROM AMAZON. They have made their Kindle reader application available for free here, so you can download books to your computer to read—as long as you don’t mind reading on a screen, that is.

Which I don’t because, well, I’ve gotten used to staring at screens all day. Plus, it saves trees. So, go Kindle!

If you do happen to download and read any or all of my books, do be sure to leave a review—I’d love to hear what you all think of them, good or bad. Also, please note that, like all things, you can like the books on Facebook or share them on Twitter.

I’m just so pleased to be able to share some good news with you. Coyote and I wrote Book I in a year, 2007-2008. All things considered, we made good time on Book II—deaths in the family, illness, financial setbacks, changing jobs, surgeries, moves, car problems, floods, etc. There was more than one occasion that we sat in a hospital waiting room with the laptop banging away at the keyboard into the wee hours. I can’t speak for Coyote, but this series has been the one thing keeping me as sane as I am. So I hope if you get a chance, you will read and enjoy them for the same reason that I write them—pure escapist fun.

Book II is dedicated to Stephen King. Aside from some obvious elements from The Gunslinger, a not-so-obvious influence is King’s plan to have not a series of separate books, but one continuous novel broken up into parts. So another thing that made Book II a little more slow-going is that we’ve had to write it and Book III more or less concurrently. We joke that our books are going to turn out like the Harry Potter series—Book I was small, Book II was not so small . . . and then somewhere around Goblet of Fire, you had a doorstop.

We are currently 500 pages into Book III, which I think is going to our best yet.

So what is the Order of the Four Sons? For those of you who don’t know what the hell I’m talking about, O4S is what I think would best be classified as “urban fantasy,” which is to say that the characters start out in this world, like Buffy or True Blood. But it’s our world with a twist—magic exists. Immortality is possible. Our heroes are a part of a secret and ancient organization that fights evil (the Order of the Four Sons, natch) and they get sucked through a series of interdimensional gates and have to find a way to get back home again.

But this is really all an excuse for us to party with a huge cast of characters that we have come to adore. So here’s a quick-and-dirty dramatis personae:

O4S

Kate West – a novice mage who has been with the Order for only a year. She was discovered by Bill Welsh as part of an investigation in a charity hospital with no memory of who she was or how she got there, but with tremendous magical abilities. The Order has taken her in and is helping her nurture her talents.

Colonel JD Garnett – a seasoned marine veteran, Garnett joined the Order after his family was gunned down, caught in the crossfire between Starry Wisdom and MJ-12 operatives.

Ryan Murphy – a trained medic and police detective, Murphy became an associate of the Order because he needed their assistance with a mysterious kidnapping case back in the 90s; the resident skeptic.

Bill Welsh – a highly specialized technician known as a “quarterback” who operates out of a van, running communications between the Order’s field teams and regional offices.

David Morgan – also a technician, Morgan operates field communication equipment for the Order’s operatives.

Dr. Douglas Grigori – an elderly Order scholar and archivist who becomes something of a father figure and mentor to Kate.

Clayton Grabowski – the Regional Director of North America for the Order; Alyssa’s foster father.

Alyssa Calderon – born into the Order, Alyssa was quickly recognized as an Oracle—a particularly powerful psychic. Usually, Oracles are incapable of functioning in society, so she was locked in the Dormitory on the Field of St. Matthew. Clayton took her in and adopted her.


Starry Wisdom

Countess Elizabeth Bathory - a 500-year old serial killer who has achieved a form of immortality through blood magic rituals.

Katarina Benicka – Bathory’s handmaiden and lover.

Nathan DePriest – A murderous, albino mutation of Carcosa.

Jack – No one knows his true name. His aliases have included H.H. Holmes, Herman Mudgett, and Hugh Musgrave, but you probably know him best as Jack the Ripper.


MJ-12 (a CIA initiative that investigates the paranormal)

Aaron Vickers – Petty, vindictive senior agent of a small group of operatives, Vickers has a dash of psychic ability, as well as a taste for pinching rare magical artifacts.

Emily Hayes – a former marine who was recruited into MJ-12. As MJ-12 leads her further away from the values she was raised and trained with, she finds herself having to make the choice of where she is ultimately going to stand.



The Unaffiliated

Akhenaten– the King in Yellow; an ancient being clothed in the flesh of what was once a man, Its goals are inhuman and unfathomable, but one thing is certain—It serves only Itself.


Check out the tabs above for the synopses of Books I and II, as well as links to Amazon. You can also click on the books at the side of this page and they will also take you to the Amazon site to view and/or purchase copies.

Also, the tabs on this blog have been updated—the Links and About section all have new information, and excerpts from all my work are available. Be sure to swing by and check them out. Thank you!

P.S., The title of Carcosa comes from a Robert Chambers story, The King in Yellow. Chambers was heavily influenced by Ambrose Bierce, and, in turn, strongly influenced H.P. Lovecraft, one of the great masters of the horror genre.

The King in Yellow contains the following poem:


Along the shore the cloud waves break,
The twin suns sink behind the lake,
The shadows lengthen

In Carcosa.

Strange is the night where black stars rise,
And strange moons circle through the skies,
But stranger still is

Lost Carcosa.

Songs that the Hyades shall sing,
Where flap the tatters of the King,
Must die unheard in

Dim Carcosa.

Song of my soul, my voice is dead,
Die thou, unsung, as tears unshed
Shall dry and die in
Lost Carcosa.


So now-- onwards to Book III, which takes place in a world called Corbenic. Its title: Where Flap the Tatters of the King.

Saturday, June 25, 2011

Pretty nurse is selling poppies from a tray

It seems that I have just fallen asleep when I am jolted awake by the sound of somebody screaming. Not screaming, exactly. More like howling. It rises and falls, “OHHHHHHHhhhhhhhhhh—” Over and over again.

Then I remember where I am. ER. Of course. Only this time, it’s me in the bed.

The room is dark. My eyes close again and when I open them, the nurse has materialized by my bedside, ghostly still and insubstantial in the bit of light from the hall.

“Was someone screaming?” I ask.

“You heard someone screaming?” Her voice is noncommittal.

I thought I did. Did I? “My head hurts.”

She nods and starts to inject more medication into my IV drip. “Was someone screaming?” I persist. “Are they all right?”

“This will make you feel better,” she says, carefully avoiding the question. Maybe I’m just paranoid—or maybe she’s just abiding by HIPAA laws. The drugs go in and that’s that, as neat and efficient as being submerged in a pool of deep, black water.

I rise again for a minute because again I think I hear someone screaming. Maybe I am imagining things.

Then for a minute, by my bedside, I see, very clearly, a roll-around cart like you’d see in a fancy hotel, with a tray. On it is a bottle of strawberry pop like my father used to sell in his convenience store when I was a kid. There’s a glass of it already poured for me, with ice. Beads of condensation dot the glass invitingly. Strawberry fields forever.

I lick my lips and try to reach for it, but there’s a blood pressure cuff affixed to my right arm. It’s set to go off at regular intervals. I’m not sure how often. Sometimes it wakes me up, sometimes it doesn’t. But the cart and sweet soda are not there.

---

I apologize for the delay in posting an update on this blog. It appears there has been a nervous breakdown in the works for some time, but hopefully that has been mostly diverted. In particular, I have been wanting to write a follow-up to my post about medicinal marijuana—the response to that has been simply overwhelming. And frankly, I could use a hit—medicinal or otherwise.

A friend shared an interesting story with me after reading my post that I would like to pass along. Now bear in mind, this information is second-hand. I can’t verify that any of this is true, or provide any further details.

The person who told me this story said he was buying pot (for recreational use, if you care to know) from a woman who lived Downtown. The woman had cerebral palsy. She was on disability and Medicaid, which, as I have mentioned in previous posts, does not cover prescriptions. She lived in subsidized housing, had no car, and was barely able to scrape a living. So she began selling pot to try to supplement her income.

Now, I am speculating at this point. Pot is not the cash crop some people may think it is. With the cartels fighting in Mexico, supply is not reliable. Trafficking across state lines has become more risky than ever. Clients are not reliable; pot is a relatively cheap, non-addictive substance which does not guarantee repeat business. So the woman turned to selling meth. Meth has the benefit of addiction—the clients are much more likely to come back. It’s a terrible way to think about things, but you cannot deny the logic. Also, it’s much more profitable, so you don’t have to sell as much of it. And it’s made here in the good old U. S. of A, so there’s always a steady supply.
The woman got busted. My friend is out his dealer. But on the plus side, the penal system is now responsible for her 100% of her medical care, prescriptions included.

---

I bring up this story because the story I have been slowly starting to share with you is the story of health, medicine, care giving, and all that goes with it: its effect on the psyche, its effect on a marriage, and its effect on life in general. But there’s a big issue that I’ve been shying away from.

Money.

It’s that thing we’re all taught not to talk about. But this is America. In God we trust, all others pay cash. We follow ads like children after the pied piper, and have been taught from the cradle that covetousness is a virtue. We like to tell ourselves that there’s such a thing as upward mobility but it’s hard—speaking as a kid who grew up with one foot in the barrio, and married to a man from a trailer park, I tell you, it’s damn hard. Feudalism never went away—we’re all just peasants with better houses. If you started life a peasant, chances are, that’s how you’ll stay. And in this economy, it’s even harder.

So, without being too impolite – which is to say, without numbering numbers – let’s talk money.
These are what my worst nightmares look like now: I open a bill from KCPL. It’s for $300. I panic. I don’t have $300. How is that possible? We are so careful about using electricity. I don’t understand.
I awaken with my heart racing.

In the winter, I dream multiple times about the heating system going out. I dream about car transmissions failing. Of tires being slashed or going flat. I dream about trees falling on the roof. About the wiring shorting out. Every morning when I wake up, I look out the front window, terrified that one or both of our cars won’t be there—that the repo men will have come in the night. Every time it rains, I pray that our basement doesn’t flood. Again. All of these fears have replaced the monsters of my childhood. Not just because I don’t have the money to handle them, but because I don’t have the fucking stamina to deal with another emergency. Not again.

---

Three years ago, Patrick and I thought we had achieved the middle-class dream. We both had good, steady jobs that held the possibility of promotions. After plugging away off-and-on, part-time, for years, we had both finally gotten our associate’s degrees from MCC. Patrick decided to sit out while I went on to Rockhurst to finish my bachelor’s. We bought our house—got in just under the wire before the mortgage crisis, which has proved to be something of a mixed blessing. All things considered, our debt was minimal. One credit card. Some student loans, but not much. Two car loans. But we were DINKS – double-income, no kids. Patrick was working for a cell phone company, so our phones were free and our monthly bill was only $20 a month. We did not have to pay for health insurance-- he was enrolled as a single adult through his job, and I was enrolled as a single adult at mine. His job awarded quarterly bonuses. Since I was a single adult, I had the additional benefit of using a flex spending account for healthcare costs, which meant I could save receipts and recoup costs for prescriptions, co-pays, and even over-the-counter medications for up to several hundred dollars a year.

Were we rich? By no means. But we were okay. And above all, we were doing everything we thought we were supposed to be doing.

We had no way of knowing that less than six months later he would be diagnosed with the autoimmune disorder that would result in total renal failure.

I know, I know. It’s not like catastrophe can’t come at any time. But come it did.

---

Really, I keep telling myself, as I have watched friends and colleagues get laid off, struggling to find work, to support themselves and their families, that we’re all in the same boat here. The best we can do is form a network to lend each other a helping hand, money, whatever we can, whenever we can.
I think of my great-great-grandmother, who came up from Mexico in 1918, after a typhus outbreak wiped out most of the village of Zamora, as well as most of her family, including her husband and six of her seven sons. She worked her way up to Kansas City with her elderly mother and my great-grandfather, who was eight years old, in tow. When she settled on the West Side, she read Tarot cards and sold bootleg to earn a living—bathtub gin, homebrewed beer, and wine made from grapes that, as far as I know, still grow on the vine in the back yard at the house on 21st and Holly. This was during Prohibition. Not so very different from selling pot, is it? A number of those houses in that old neighborhood have secret rooms in them, which I imagine were used as either speakeasies or storage areas for booze during that era.

Seems so quaint now. We admire that sort of enterprising spirit in the face of adversity, the sheer will. To beat the odds, no matter what. To always find a way, even if it means breaking the rules. The sheer guts.

I can’t think of anything more American than that.

---

Five months after Patrick was diagnosed, he was effectively unable to work. The medical bills had started to mount. After he used up his paid time off, he qualified for short-term disability, which meant he got 60% of his pay. I tapped out my paid leave quickly.

On some level, I was always aware, but it’s not until it actually happened that I really found out how little it takes to upset the whole financial apple cart. In addition to reduced paychecks, there was all the money I spent eating in the hospital cafeteria or fast food because I wasn’t at home. Frequent trips to the emergency room-- $100 a pop. Medications—at first, he was taking so many, and they were being changed frequently to accommodate his changing condition. We’d start one drug, then have to throw it away because it didn’t work, or the side effects were so bad, we’d have to switch to something else. His diet had to change, so we’d have to buy new foods—at one point, the low-sodium, low-potassium diet necessitated a complete overhaul of the pantry. He had steroid-induced diabetes, which meant purchasing a glucose monitor, needles, insulin. More money.

After Patrick officially went on disability, our income was cut in half, and our expenses doubled. He had to go onto my insurance, which means we had to start paying for insurance, which meant a big chunk was suddenly gone from my paychecks. We had to start paying for cell phones, for cell phone service. The quarterly bonuses were gone, the flex spending account, gone.

In no time, we’d racked up five credit cards. I started missing payments on things. Bouncing checks. And you know where it goes from there. Late fees. Overdraft fees. Creditors sending letters. Calling, calling, calling. You wouldn’t think such a thing would be so stressful, but it is. It’s designed to be. I’ve borrowed money from my parents that I don’t know that I’ll ever be able to pay back. The threat of foreclosure and bankruptcy looms large. I feel like Sherman McCoy in Bonfire of the Vanities, hemorrhaging money. I have begged, borrowed, and I haven’t stolen yet, but I would if I thought I’d make a halfway decent criminal. Or maybe I would. I'm the descendant of a successful bootlegger.
As if the medical problems weren’t enough, there’s all the other life stuff—because there always is and always will be. We discovered black mold in our bathroom, which had been exacerbating my asthma since we moved in. This necessitated ripping out the bathroom and redoing the whole damn thing, which, theoretically, should’ve been a weekend project but wound up dragging on for months and still, technically, hasn’t been completed. Plumbing problems in both the bathroom and the kitchen. Our car tires got slashed twice and we’ve had two blow-outs. The Dodge needed new brakes and had some other problems. The basement flooded two years in a row—last year, catastrophically, when the sewer lines in this area backed up, leaving us with a foot of standing sewer water in the basement, taking out our hot water heater, and washer and dryer, along with a lot of other stuff we had stored down there. Plus—gross.

Any one of those things by themselves could range from an annoyance to a major headache. On top of Patrick’s health problems, they become enormous obstacles. Then factor in my going to school, never less than nine hours a semester, up until this past year, which I took off in order to get a second job . . . and I’m really not sure how it is that I haven’t been hospitalized before now.

Patrick found a great article on cracked.com the other day, 5 Things Nobody Tells You about Being Poor. My favorite part was, #1. You are always in survival mode. I thought this really summed the up the experience.

---

I’ve been trying to evaluate when the perilous loss on my grip may have started. I leaf through my journals and find, as early as March 2009, outbursts of hysteria I have managed to forget: I cry all the time. I don’t sleep. I am finding, to my amazement, that I function very well on little to no sleep. Even though I want to kill someone, I have become very kind, sociable even. Last week, I wanted to kill myself. For the first time in my life, I really, actively, seriously considered doing it—cutting my wrists in the bath, like a Roman, purpling the water with my blood. I feel life has finally defeated me. Pitched me a curve that I just can’t hit. If I believed in the Devil, I would be prepared to give him my soul on the spot if he would make Patrick well again. I can bear anything but that. I know how cowardly it is to want to kill myself over that, but oddly, that doesn’t bother me. I want to put down the burden, too. My reasons are entirely selfish and self-indulgent. So why didn’t I? Coward. Again, the odd thing is how nice this has made me. All my co-workers have suddenly become very friendly and sweet. I talked to Coyote about this. He said it’s because now I’m dead inside, like they are. I said that I’m not dead. Just sleeping. Maybe that’s the reason I don’t kill myself. The prospect that this is a long nightmare I will wake up from.

I sat on the bathroom floor sobbing until 2 a.m., sobbing into a towel so Patrick wouldn’t hear . . . I don’t recognize myself. I’m frightened by what I see. But I don’t know how to get help. And anyway, how can I tell someone that all I think of is death, and that rage and depression are eating me up, and the sense of dread that I will never accomplish anything, and I just want to be free of it all?

---

So last fall I got a second job—a temp job was all I could find, doing data entry and filing at night. It was available only through December. But it kept us afloat for a while. I also took some freelance editing and translating jobs.

---

I’ve had migraines since I was seven years old. They were pretty bad throughout high school. Then there was a point when I was eighteen and nineteen when things got so bad I couldn’t work or go to school. I would spend days in bed, unable to stand light, sound, or even smells. I would vomit. Patrick would have to take me to the ER, where they would dope me up with Demerol and morphine. It didn’t stop the migraines, but it would knock me out, so at least I wouldn’t care about the pain anymore. Finally, I went to the Headache & Pain Center in Overland Park, where I was put on some preventatives that finally got the attacks under control. Over the years, I have continued switching up my preventatives periodically to keep the migraines in check, but it’s been no picnic.

Everything about my migraines has been atypical: the fact that they started so young, the frequency and severity of them, neither of my parents had them, and all of the weird sensory disturbances I experience.

Within the past year, I’ve started having full-blown hallucinations. Once, when I was leaving the office, I walked past my co-worker’s desk and I saw a tiny person scamper across it. But when I stopped and looked again, I realized that it was just a photo box he has on his desk with pictures of his grandchildren. Another, more disturbing instance occurred when I was out for a walk at night and I swear I saw a grotesque, elongated, flesh-colored creature clamber across my neighbor’s roof. Shadows move, shapes shift. When I close my eyes, I see brilliant flashes of color behind my lids—fields of blue and yellow and orange. Once, when I closed my eyes, I saw a swimming pool with three dead bodies floating, naked, face-down. Then I closed them again and I saw three dead bodies floating face-up in a pond filled with algae. It’s scary and disorienting. I get strange scents and tastes, from the infernal to the sublime—rotten meat, burning hair, pepper, lavender, mint. Up to twenty-four hours before a migraine hits, I experience euphoria, bursts of energy, a sense that the world’s colors are sharper and brighter. Food tastes better. I see auras and floaters and tracers. The texture of my dreams changes—I can’t explain it better than that, other than to say it’s like watching some new quality and definition of film.

Then, the aftermath of a migraine leaves me wrung-out, hungover, and the color is gone from the world, like a washed-out watercolor. I am left a burnt fuse. When I get in the shower, my skin is unbearably sensitive. The droplets of water feel like needles. Food and drink burns my mouth.
Lewis Carroll was said to have suffered migraines, as did van Gogh. I can understand, only too well, the strangeness of their visions. I don’t know if William Blake had migraines, but he saw strange visions as well—he saw God. He saw angels and prophets in trees. How do you know what’s real and what’s not?

You know how Eskimos are said to have many words for snow? I am like that with migraines. I have many phrases to describe what it feels like: the end of the world in my head. My brain trying to eat itself. The blood vessel rebellion. My head is a dry socket. It’s like Jacob wrestling the angel. The migraine beast. Being locked in a room with a beast. Alone. No one can save you.

As a lifelong migraine sufferer, I’ve had a recent CT scan, which was negative—so no strokes, no neurological problems that I’m aware of. I have regular tests done and, so far, they’ve all come back normal.

---

Another point where I felt my grip slip a little more happened on March 9. Ash Wednesday.
I’d gone to mass at Our Lady of Perpetual Help over my lunch hour at Redemptorist Parish. My mother and uncles attended Catholic school there. My uncles served as altar boys. I attended school there as well; made my First Communion.

That day, the priest pressed the ashes very heavy and dark into my forehead, intoning, “From dust thou art, to dust returnest.”

When I came back to the office, one of my co-workers and very good friends, Chris, collapsed at the office and was taken to the hospital by ambulance. I shared an office with her. I had just spoken with her and she seemed fine. I excused myself to go heat up my lunch to eat at my desk when someone came rushing into the break room a few minutes later to say they’d found Chris in the lobby, on the floor. She’d apparently gone out there to make a phone call from her cell, trying to get better reception. She’d started feeling sick and was trying to call her doctor.

I ran out in time to see the paramedics loading her onto a stretcher. She was awake at least. She grasped my hand before they took her away.

Someone thrust her cell phone into my hands and asked me to call her husband since I’d known them the longest.

So I did. My hands were shaking so hard I could barely dial the number. I don’t know what happened. I just fell apart. You’d think after all my experience with hospitals and illness that I would have been calm. But I just wasn’t. When her husband answered, I managed to stammer out that Chris had been taken to the hospital and that maybe it was a heart attack. He was calmer than I was.

My mind was blank for the rest of the afternoon, except for the phrase, “From dust thou art, to dust returnest,” running over and over again in my head, a song stuck on repeat.

As I walked slowly back to my desk, one of my other co-workers, a guy who was actually trained as a nurse and served as a medic in the first Gulf War, came up to talk to me. Fortunately, he was one of the people who had gotten to Chris first. Unfortunately, he chose that moment to come share his war stories with me. The wounds he treated. Burning oil rigs. I don’t know what-all because, suddenly, I just couldn’t hear it.

All my life, I have been one of those people that other people choose to unburden themselves to. If I were a man, I would have made a good priest, a good confessor. I’m an excellent listener. I am not judgmental. I have had perfect strangers confide in me, even cry on my shoulder, and for the most part, I’m fine with that.

But that day—I just couldn’t do it. I looked him in the eye, and nodded when it seemed appropriate, but it was like my head was under water. No sound penetrated my ears. Or like on the old Peanuts cartoons, whenever an adult spoke, all you heard was, “Waaa waaa waaaa waaa.” That was all I heard from him. I simply could not take in any more information.

I had reached critical mass.

---

That weekend, the migraine hit with a force like a supernova.

It was so bad that I thought Patrick was going to have to take me to the ER. I was out of commission for three full days. I stayed in bed except when I crawled to the bathroom to throw up. Nothing in my pharmacological arsenal could touch it. The migraine beast had me in its jaws and refused to let go.

---

After that, the days blurred together. I don’t think that the migraine ever went away fully until sometime in May. I had occasional respites in which the pain abated, but there was always a dull, background ache. A scary twitching had started in a large vein on the left side of my head.
In April, my doctor doubled all my dosages—my preventatives, my painkillers, but to no avail.
In May, he made the decision to switch me from a beta-blocker to an anti-seizure drug, which I had never taken before. The new drug would have major side effects. The drug is so potent, you have to work up to a full dosage slowly. It would take a full month for me to get there.

Over the course of that month, I fought through the side effects. Vomiting, diarrhea, memory loss, clumsiness, slowness. Poor concentration. No appetite. I’ve lost 14 pounds—not that I can’t afford to lose the weight, but still, it’s unsettling to see it come off so quickly. Tingling in my hands and feet. Painful pins and needles, especially in my feet, which can last for up to five minutes. I get this weird sensation like ice water trickling down the backs of my legs. My eyes burn and are frequently bloodshot. My eyes twitch—not the eyelids, but the eyeballs themselves, which I think I hate most of all. No, scratch that—what I hate most of all is the damn fatigue. I’m used to being able to stay up all night if I have to in order to study and get things done. This medication makes it impossible. The first night I needed to stay up and do homework, I was out by 11:45. I’m used to being able to pull all-nighters. Night time is my time. I don’t want that taken away.

But. No migraines. It’s kind of hard to argue with results.

---

So once I got up to the full dosage of the new medication, it was time to wean off the old stuff. The doctor warned me to take it easy—it could cause passing out. But I weaned down, a quarter of a dose at a time, until I was down to half a pill a day. I thought I was in the home stretch.

Then, two weeks ago, I started to stand up from my chair at the office and almost keeled over. Alarmed, my co-workers sent me home early.

That Sunday, it happened again. Patrick and I had dinner with my parents. On the drive home, I was overcome with dizziness. Fortunately, I was not driving. But as soon as we got home, I had to go inside and immediately lie down. It lasted for hours, dizziness accompanied by the most unaccountable sensation of euphoria. Waves of pleasure passed through my body making my muscles contract, explosions of color erupted in my skull like fireworks. It felt good, but it was also strange in that I felt like, at any moment, I might wink out of existence. And I was fine with that.

---

On the 15th, Wednesday evening, after class, I hung around, talking to my professor and two of my friends. I thought I was all right. I was feeling so good, in fact, that I was considering going to a student writing group that meets every Wednesday night. But as we stood in the hallway talking, the dizziness slammed into me again. I had just enough time to grab my friend’s arm to keep myself from falling.

The three of them herded me into the professor’s office, where there was a couch. I lay down for a while and tried sipping some water. They offered to call an ambulance or take me to the hospital. Ultimately, I declined both, even though I was shaking. My professor was good enough to drive me home.

Needless to say, I did not go to work the next day, but saw my doctor. We had to rule out withdrawals from the old medications first, so he put me back on it, but he told me that he thought it was more likely that I was experiencing anxiety attacks. Did I have a lot of stress in my life?

Sure. Who doesn’t.

At first, I refused to believe it—didn’t want to believe it. It’s funny. I can accept and understand and sympathize when others have panic attacks or other psychological issues. But I couldn’t accept it in myself. I know it’s irrational, but it feels like failure; like I can’t handle my shit. So at first, I couldn’t even entertain the possibility. But then, over the weekend, I caught myself: whenever I thought about work or school or finances, I started to feel dizzy and sick, and it became harder and harder to deny.
So Monday morning, I picked up the phone and called my doctor. “You’re right,” I said. “Let’s try some anti-anxiety medication.” He called the prescription in and I picked it up that evening. It was Celexa, a relatively mild, low-dose, anti-anxiety medication.

---

The next day, Tuesday, when I awoke, I was horribly nauseous and had little appetite, but I attributed that to the pressures of all the projects I had going on at work. Wednesday was worse. Not only did I have little appetite, but I had little thirst, which should’ve raised a red flag. But I was so busy I didn’t give it much thought.

Thursday morning, when I awoke, my appetite and thirst were just gone. It was as if someone had flipped a switch. I didn’t even want water. I became violently sick. So we called my doctor’s office. But as we waited and waited for them to call back, I got worse. I started to twitch and shake.

Patrick said, “That’s it. We’re going to the ER.”

He bundled me up and got me into the car. My hands were shaking so badly, he had to fasten the seat belt for me. And then when we got to St. Joseph, I could barely hold the pen to sign in at the registration desk. All I could think was, please, God, don’t let me be admitted. I can’t afford to be admitted for too long. I have to work. I have to make money. We can’t go bankrupt. Not now. Not over panic attacks.

I had never been to St. Joseph’s ER before. The room is decorated in cool blues and golds. Fittingly, there’s a statue of the Virgin Mary. Only the week before, I had dreamt of a blue and gold Catholic chapel.

As we sat in the waiting room, I put my head on Patrick’s shoulder as tremor after tremor passed through me—to a passerby, I must have looked like I was cold. But I wasn’t cold. I just couldn’t control the rattling of my limbs, like bare window pane in a high wind.

---

They get me in an ER room quickly. Patrick helps me change into a hospital gown. The nurse comes in to check me over. She says she’s going to start an IV line.

“Oh no,” I groan, immediately anticipating that it’s going to take multiple nurses and multiple sticks before they get the IV line started. I’m dehydrated and I have small veins. They’re probably going to have to wrap my arms with hot towels. I’m already imagining bruised inner elbows, bruised hands, maybe some blown veins.

“You just hold my hand like we’re on a date,” she says soothingly.

Despite myself, I smile a little. “You like brunettes?”

“Sure, if you like redheads.” She inspects the back of my left hand for a minute, has me flex the hand.

“What are you talking about? You have great veins. I found one already.” She prepares the needle.

“Here it comes, a little stick.”

I don’t feel a thing. Usually, the back of the hand is the worst. “Wow, you’re talented.”

“Thank you. Now we need to do labs.” She has me rest my hand on her thigh. “Second date!” she says.

“Second date, I get to second base,” I say. “Get to feel you up.” She laughs.

“You shameless flirt,” Patrick says.

There is no pain whatsoever as she fills vial after vial for the lab techs. “God bless you, you are good,” I marvel. I mean it—capable nurses are God’s own angels.

Meanwhile, I’m developing a headache because I haven’t taken any of my migraine medications that day. The nurse picks up on this, and turns the light out as she leaves.

The doctor, when he comes in, is terrifyingly young, with spiked blond, surfer-boy hair. But when he leans down to check my pupils, I see that his eyes are intent and serious. He confirms that I am having a bad reaction to the Celexa and orders to me to cease taking it immediately. No driving for a few days, no work, light meals. He says it will take the Celexa 3-5 days to cycle out of my system.
As for the rest—I am, indeed, dehydrated, and the shaking is from anxiety. So he orders fluids, as well as a lovely cocktail: Atavan to calm me down, Zofran for the nausea, and some kind of opioid—Fentanyl, I think. The nurse brings the bags and vials and loads me up.

She shuts the light back off. I’ve got my mood light. All I need is a little Zen music and I’d be set.

---

The ER doc released me yesterday, though he gave me the option of staying in the hospital. Today, I was still nauseous and shaky. Still no appetite, still having dizzy spells. I have lost three more pounds this week, which means that in a little over a month, I have lost 17 pounds altogether.

I followed up with my regular doctor this afternoon. Such a severe reaction to Celexa means that I probably won’t be able to take any anti-anxiety or anti-depressant drugs—Prozac, Zoloft, they’re all in the same family and carry the same risk of side effects. Rather than inhibit serotonin in me, it seems I am one of those rare people for whom these drugs stimulate serotonin levels, which only makes my symptoms worse.

But no medication is fine with me. I proposed therapy as an alternative. The good Dr. Charochak, who I have already mentioned is a proponent for as little medication as possible, perked right up at the suggestion. He happily printed off a list of therapists, as well as a prescription for Xanax. He said it would help with the shakes and the passing out. I took two pills after lunch and didn’t feel a goddamn thing. I did stop shaking though, so I suppose that’s something.

---

I think of the person screaming in the ER. It’s as likely a place as any for someone to be screaming. And I think of my great-great-grandmother coming up from Mexico, and how hard she worked to get here. I’ve seen photos of her, and she looked like one hard-nosed broad, but surely sometime she must have cried?

On the other hand, there was my great-grandfather on my father’s side, who threw himself off a building in the stock market crash in ’29. If anything can break a person, it’s the prospect of complete, total and utter financial ruin.

I feel these histories swirling around me. I don’t know how much a single body should be expected to take in one lifetime, or what strength or weakness is anymore. I just know that I’m tired. And next time I get a chance, I’m picking up a case of strawberry soda to wash down my Xanax.