“I’m sorry,” I said. “I don’t know why I’m crying.”
In a kind voice, he reassured me. He asked me to start from the beginning. Childhood, family, early relationships. I had a great childhood, I said. I had a great relationship with my parents. I was privileged! I was lucky! All of the things in my life, I told him, made me happy. My work, my school, my friends, my new city—I was right where I wanted to be.
“Except”—here I began to cry again, gesturing helplessly with fists full of Kleenex—“my marriage.”
It was the first time I had said anything of the sort out loud.
They were guilty tears, I recognized. I felt my mother’s stoicism flow out of me. Saying my husband didn’t make me happy felt the same as saying my child didn’t make me happy. It was the grossest betrayal.
I didn’t say this to the therapist. I told him I loved my husband. But he was so far away. So very far away from the rest of my life. He seemed as far away as this therapist was, across the room in his office chair, the wide flat field of an Oriental rug between us. How was I supposed to close that distance here?
MERCURY RISING
The first day of October again. This year, in our new house south of Ithaca, it chokes the forsythia fields with fog. Over the French doors in the bedroom hangs a Battlestar Galactica bedsheet. We have forgone mirrored closet doors for hollow wood, and there is a hole in one of them the size of a fist.
The day is spent sorting test kits on the kitchen island. Each comes in a little wax-board box, the instructions folded with a silky FedEx envelope inside. I would like to get a pair of pants made out of these FedEx envelopes. The blood will be shipped to California, the saliva to Illinois, the stool to North Carolina, the urine and more stool to the parasite lab in Colorado. The vials wait empty in their bubble-wrap beds. For the stool, there is a plaid paper tray, the kind that might cradle an order of curly fries at the state fair. We tuck the saliva tubes into the freezer against the waffles. These tests will cost us around two thousand dollars.
“It was better before, when I didn’t know what it was.”
We don’t yet exactly know what it is. The test results will take weeks. But two months ago, Laura, the health coach, recommended an herbal antiparasitic. Sage, clove, black walnut oil. How strong could it be? When we got home from his appointment, he took one drop of the foul-tasting tincture on his tongue. All night, all bad night, he sweated and swore and moaned. His nose ran; his head hurt; he was delirious with fever. He felt, he said, like he had the flu. Laura had warned us about Herx symptoms, the painful die-off of toxic bacteria that often occurs after an antibiotic regimen is begun. Short for Jarisch-Herxheimer Reaction, named for two doctors who were in fact dermatologists. The same idea applied here, Laura said. Herx was terrible, but it meant the antiparasitic was working. It meant it had things to kill. When I emailed her Aaron’s symptoms the next morning, she replied, “I know it’s going to be a road.”
Now, almost two months later, the Herx symptoms have eased, but still Aaron takes the tincture, three drops three times a day, followed by an activated charcoal pill to absorb the toxins. For a week before the tests, though, Aaron must abstain from it. He must allow them to infest him again, undeterred. He feels them crawling through his socks, through the pads of his thumbs, through his scalp. I see a worm, an inch long, pink-gray, no wider than angel hair pasta, squirming in the bottom of the bathroom sink. Did it come from inside him? This I don’t know. But it is, unmistakably, a worm.
* * *
The health coach leads to the psychiatrist—a functional medicine psychiatrist, which is a thing—who works in the office across the hall. Dr. Pascal. Aaron hasn’t seen Dr. Friedlander for six months, after she went on vacation and he didn’t reschedule an appointment. Dr. Pascal works as a team with Laura, the health coach advising us on the whole health picture, the psychiatrist writing prescriptions. Dr. Pascal is petite, middle-aged, with a blondish pixie haircut and sleeveless shell blouses, and we go shoeless in her carpeted office, too. Aaron is nervous; he wants me to go in with him. “Do you have an Ativan?” she asks. When he produces his little silver vial, she says, “Just chew on one, honey, while we talk.” She isn’t sure if he has schizophrenia. She is pretty sure he has ADHD. Maybe, I think. She is kind and understanding and nonjudgmental; she is the kind of doctor who wants to be on his side, them against the world. If we are in the world of Stranger Things (are we?), and all of the other doctors we’ve visited so far are the white-suited Hawkins Lab scientists who insist that no evil lurks under the surface, then the health coach and the psychiatrist are Murray Bauman, the eccentric, Russian-fluent conspiracy theorist/private investigator who is so out there he just might be right about the world: it’s out to get you. They have that kind of outsider authority, with better grooming habits. I am not sure, though, if Dr. Pascal really comprehends the degree to which my husband is losing his mind on a biweekly basis. She re-ups his prescription for Ativan and Seroquel, and I write her a check for $225—she does not accept insurance—on a glass coffee table.
Laura doesn’t accept insurance either, but she charges us only fifty bucks a session, which leaves me in awe. For her part, she has provided Aaron with the name of a medical marijuana website. “I don’t like the alcohol,” she says when Aaron tells her the drinking helps. “I’d rather you have cannabis.” He schedules a phone call with a doctor—this is one doctor he will gladly call himself!—tells him his symptoms, and in ten minutes is emailed a certificate. The medical marijuana office is in a plaza in Binghamton next to a travel agency and a Papa John’s; we present our IDs and are given an orientation by the “pharmacist” (This is someone’s job, I can’t stop thinking), who displays a color wheel and points out the best spectrums for Lyme, the recommended blend of THC and CBD. In the car, Aaron tries out the oil in his new glass vape pen, and I am relieved and confused, tallying the number of hours I’ve spent over the years trying to get him to stop smoking pot.
The health coach and the psychiatrist lead to a semi-famous Lyme doctor downstate, Dr. Bernard. He has treated the psychiatrist, and the health coach’s son. He’s written books with his semi-famous doctor brother. Ithaca is the kind of place you’d think would be crawling with Lyme doctors, but they are few and far between. This one’s a quack, one friend warns, that one has no openings until December. So after we drop off the kids at school, we drive the three and a half hours to a little town outside Woodstock, where there is a little farmer’s market and purple flowers hanging from the awnings outside the shop windows. In the medical building, we walk down a long, skylighted hallway, under giant colorful mobiles that look like Calder knockoffs, and I take a picture of Aaron standing there against the yellow and red and blue, thinking I will look back at this picture someday; someday it will be the Before, the beginning of the After.
We (by which I mean I) have had three hundred pages of Aaron’s medical records—the size of a novel manuscript—forwarded to the office from a half-dozen doctors in Ithaca. We sit across from Dr. Bernard as he flips through them at his glass desk. He seems neither interested in nor impressed by the pages. He looks like a doctor. White man, white coat, white hair, metal-framed glasses. When I try to summarize helpfully, he just nods. I look around at the red Oriental rug, the modern mall inspiration-art, little stone-colored Buddhas, a long banner featuring a quote from Thich Nhat Hanh, another a quote from Bob Marley.
“You’ve heard of Morgellons disease?” the doctor asks, eyeing us over his glasses.
“We have,” Aaron says.
“We are concerned also about parasites,” I am sure to say.
We are shown to an exam room, where I take notes in my green notebook and the doctor looks, a little, at Aaron. We leave with a lot of orders for tests, which we need to complete ourselves, and a little white gift bag of medicines, except they are not gifts; they cost $400, and the appointment itself is $1,300; I take out my debit card once, then again.
Down the street is a vegeta
rian restaurant where we eat lentil soup and tofu steaks and think thoughts of wellness, of spring, though it is fall. Aaron looks like he has been shoved over while sleepwalking and is trying to stand up.
* * *
The smoothie Laura has recommended is mustard-yellow, and I make it every day in our Ninja blender, pouring it into what looks like a milk bottle, which I have bought for this purpose, a blend of papaya, pineapple, coconut water, cashew yogurt, sunflower seeds, and turmeric. It is a natural antiparasitic. I am healing my husband, I think. Dropping in the three ice cubes feels like love. I bring it to him and leave it on the bedside—he is in bed, in the darkened bedroom, almost all the time. The boys crawl over the bed, nuzzle his neck.
“Careful,” I say. “Daddy’s sick. He’s getting better.”
His eyes are closed; he reaches for them, pets them. He doesn’t look like he’s getting better. He is still breaking out, freaking out. He’s just doing it in this bed.
When I fill the prescriptions, old and new, there are twelve of them. Antibiotics, antiparasitics, an antidepressant, an antipsychotic, probiotics, an adrenal lotion Aaron is to smooth onto his wrists in the morning, a different adrenal lotion at night. A watermelon-flavored gel he squeezes into his mouth from a tube. Four or five different powders he is to stir into water, to balance, detox, cleanse. It is a curious assortment of medicines: the strongest of Western medicine (some would say brutal), the most delicate of natural medicine (some would say feckless). The orange bottles stand on display on the white desk, a little pharmacy in a corner of the bedroom. The backup is stored in our closet in an old green reusable grocery bag: I LOVE MY CO-OP. In the middle of the night, if needed, I can reach into the bag in the dark and before long I can recognize the feel of each plastic cylinder in my hand, its circumference and height, which is the Rifampin, which is the Gabapentin, the Azithromycin, the Seroquel, the Fluvoxamine. I am proud of this skill, my ability to identify what my husband needs and give it to him.
Soon, though, the system requires more order. I buy a plastic pill case the size of a laptop, the kind with four openings for each day of the week: morning, noon, afternoon, night. I drop the pills in one by one; together, they make a colorful rattle. Aaron has a white board, a fancy one with a glassy surface and a stand, like an 8 x 10 picture frame. Where did it come from? It’s the kind of thing Aaron has. I wipe it clean and with the dry-erase marker, in capital letters, I list the name of every medicine. To the left of each name, along the margin of the board, I Scotch-tape a single pill. They are tiny white tablets and blood-colored gel caps, fat ones and long ones and the big kind my dad calls “horse pills.” It is a beautiful list, and this, too, I am proud of. I set it on the desk and sit down on the bed next to Aaron. I say, “Just so we can tell them apart.”
Aaron nods.
“Isn’t it nice?”
“It’s nice,” he agrees, but his eyes are closed. He looks like hell.
“Aren’t you impressed?”
“I’m impressed.” Without opening his eyes, he says, “Thank you.”
* * *
It wasn’t supposed to be like this. I have done the research. I have gone to meetings, checked out books, made appointments, I have figured out, more or less, what the fuck is wrong. I have solved the case! We just need to wait and see what the test results say. I have stuck with him. He should be grateful.
“I am grateful,” he says. “But you have to understand. No one believed me. For seven years, no one believed me.”
It becomes a refrain, sometimes muttered, sometimes sung, sometimes spit. Sometimes he cries. Sometimes he hurls it with a fist through a door. I try to remind myself that I am only the recipient of this anger, this sadness, I am the only other person in the room. I just have to sit it out. He is mourning the last seven years, time he can’t get back. There will be more time, a future where he is something other than the long-suffering patient, where I am something other than the long-suffering wife.
Sometimes he tells the kids. It comes back to me, like a boomerang.
“No one believed Daddy had parasites,” Henry tells me. “For seven years, no one believed him. That’s as old as I am.”
“I know,” I say.
“The doctors didn’t believe him. You didn’t believe him.”
“Yes, I know, Henry. It’s complicated.”
“I believed him,” Henry says.
* * *
Stu doesn’t believe him, Aaron says.
I don’t know about that, I say.
This is an old refrain, pre-illness: Aaron says someone doesn’t like him, looked at him funny, said something rude. I say: I don’t know about that. I try to understand this as the safety measure of a child abandoned by his parents: Trust no one. Leave them before they leave you.
Now, though, the stakes are higher. One Wednesday afternoon we go in for our weekly appointment and Aaron is manic again, rocking in his seat, getting up, pacing. He keeps crossing the room to show Stu the pictures on his phone, as though Stu needs proof to see that something is very wrong. It’s almost a comfort, Stu’s calm witnessing. I can sit in my armchair and watch. I am not alone.
“Aaron, let’s put the phone away,” he suggests.
It’s not until days later, after he’s gotten some rest, that the insult sinks in. “Let’s put the phone away, Aaron! Fuck that. Like I’m some crazy person. I’m done with him.”
“Aaron. You were acting crazy.”
“Well, fuck you both then.”
“Great. Let’s just throw away seven years of therapy.”
“I am. I’m done.”
“He’s Stu. You love him more than your parents!”
“Fuck all of them. He’s the one who dismissed me.”
* * *
One of the problems is we still don’t really know what we think of Morgellons. I don’t, Aaron doesn’t, and together we definitely don’t. We don’t understand how the disease is said to work, how it relates to parasites. The Morgellons diagnosis feels as flimsy as a hologram, but it is the firmest thing I’ve had my hands on in years. In the right light, it makes a kind of sense.
“I believe you,” I tell him.
“Do you really believe me?”
“Yes,” I say, which is to say, I believe that something in your body is making you sick. Which is to say, I’m sorry, I was scared, I trusted the doctors. What we are agreeing to is a shifting raft; it floats away; flips over; it isn’t strong enough to carry both of us. Aaron accepts a Morgellons diagnosis provisionally, as part of a larger system of illness; he insists that what ails him is alive inside him.
According to the book, Morgellons fibers are not parasites; they are abnormal productions of keratin and collagen. Many patients mistake them for worms, though, because they feel movement in their skin, because a kinetic charge sometimes seems to send the fibers stirring. Laura tells us that a parasitic load could be unrelated to Morgellons, but could be a factor nonetheless. We all have parasites and bacteria in our gut, she tells us. When we are sick, when our immune systems are weak, our gut can become dysbiotic. People with Lyme often have other lingering health issues, a cocktail of symptoms that compound each other and slow the healing process: toxic mold exposure, gluten intolerance, physical or emotional trauma in the past. I watch a news video about a parasitologist who claims to have found the cure for Morgellons: a replacement of the mercury fillings in their teeth. Other, more reasonable sites confirm this theory: it is believed that heavy metals keep the immune system from fighting illness. I find Aaron in bed and ask him to open his mouth. His molars are filled with metal, that silvery gold—we count twelve teeth capped with mercury amalgams. He reminds me that, as a child in the nurse’s office at school, he once accidentally bit into a thermometer, spilling liquid mercury into his mouth. The image of my husband, poisoned since childhood, speaks to me.
I find a holistic dentist—which is a thing—in Syracuse and make an appointment. What else are we to do, while we wait for the results? T
he dentist is kind and gentle. He will remove the amalgams, three at a time, over a period of months. If we have to, I think, we will take Aaron apart and put him back together again.
* * *
It is easier to direct my anger outward, outside of my house, at Them.
“Morgellons,” the Wikipedia entry reads, “is the informal name of a self-diagnosed, scientifically unsubstantiated skin disease in which individuals have sores that they believe contain fibrous material. Morgellons is not well understood, but the general medical consensus is that it is a form of delusional parasitosis. The sores are typically the result of compulsive scratching, and the fibers, when analysed, are consistently found to have originated from clothing and other textiles.”
The entry is filed under “pseudomedical diagnosis.”
This makes me so mad I actually scream.
I scroll all the way to the bottom, rage-reading. There are forty-five sources cited for this article, but none of them has the name Middelveen, the primary researcher who has confirmed the presence of filaments. The only mention of those who believe the disease is real: “An active online community supports the notion that it is an infectious disease, disputes that it is psychological, and proposes an association with Lyme Disease. Controversy has resulted; publications ‘largely from a single group of investigators’ describe findings of spirochetes, keratin, and collagen skin samples in small numbers of patients; these findings are contradicted by much larger studies conducted by the CDC.”
The whole history of the work of Morgellons researchers reduced to a series of passive-aggressive semicolons.
This is unbiased? This is an encyclopedia?
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