A couple of weeks ago, I got a request for a visit from my friend J, who lives near the area of central PA where I grew up. My friend is very ill with lupus, and her latest flare-up left her reeling. I agreed to come out to stay with her to cheer her up a bit with some fun photos and pleasant company. The idea of escaping the city for a week or so with grass and mid-August meteor showers also seemed appealing.
J. met me in the kitchen when I finally arrived. I hadn't seen her for some time. The Loretta Young lookalike with the gigantic eyes and flaming strawberry red hair was nearly unrecognisable. Prednisone and medically-induced poisoning had punched through her body, leaving her sleep-deprived, swollen, and sore. Swaddled in a blue robe emblazoned with stars, she enveloped me in a bear hug. At this point we both got the sense that this visit was going to end up being something beyond our original intent.
No one is entirely sure what lupus is. According to J, it "really doesn't exist." The word itself is Latin for 'wolf,' the affliction is an autoimmune disorder, and antibodies turn on their host, attacking various organs, making the body extremely sunlight-sensitive. Pregnancy with lupus is out of the question, because an embryo is seen as an invader. It's absolutely frightening, and its incurable.
Her inability to be in the sun for long periods of time keeps her confined indoors, desperately crowdfunding to find a safe, practical space, or casually googling what might be killing her, if her eyes are working that day. Her daytime outings involve either floppy hats, shades, coats of sunscreen, and coverings, or sitting on her porch, chucking balls for the dog from the safety of a roof cover.
With no family to regularly assist her, she is stranded, except for the assistance of neighbours and friends. After a lifetime of caring deeply for others' welfare, she now finds herself too physically weak, mentally exhausted, and emotionally distressed to find the energy for her own well being. The first night I was there, the next door neighbour, a good ol' boy with half a six pack already in him and a heart of gold, came wandering over with a dozen eggs from his chickens and ducks. I never saw a woman weep with gratitude over eggs before.
"You don't understand," she said, holding one up to her eyes. "I desperately need nutrition and I've been living on white bread and rice all week because almost everything contains something that could poison me. I even have to know what is in my food's food. These are safe for me to eat and I can't believe they're right here." The neighbour cheerfully took her over to his garden and offered her as many tomatoes, onions and peppers that she could eat. If he had offered her a trunk full of rubies, I don't think she could possibly have been happier. After all, you can't eat rubies.
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Over the next few days, the true nature of her personal microcosmic hell came to light. During her hospitalisation, her cousin was killed in an accident and she was too sick to attend his funeral. The shoes she had purchased for it still lay unworn and resented in the kitchen shoe rack.
She told me to photograph everything that went on in her home: her food, the environment, interactions, her emotions. So that's what I did. Alice the fly on the wall, the voyeur, the documentarian. No amount of bleak street photography could have prepared me for magnitude of this experience. Normally I can walk away, conscience cloudy, hiding in my room idly wondering who the people are that I notice. Here, I was effectively forced to watch helplessly as my sweet friend stumbled through her dark night of the soul.
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The next day I accompanied her with another friend to her town, home of the Grier School, a ritzy equestrian girl's boarding school. According to town gossip, Bette Davis's daughter had attended there and gotten scandalously knocked up by a local. The Grier School was clearly my friend's happy place, an ivy-covered wonderland on the periphery of a village she described as "imagine Stephen King, David Lynch and e.e. cummings get drunk and make up a town." We shot some pretty photos on the campus, she proudly showed me the Grier kitchen where generations of her family had worked, and some angel gave us popsicles and juice.
We then visited the rest of the little village. The Ancient Greek influences on the architecture were strange for rural Pennsylvania: horse troughs with elabourate lion-shaped spouts, working water pumps, Ionic columns. J. described each house her family had lived in, and upon the discovery that the old water pump her grandmother had used was in fact unlocked and working just fine, she ecstatically ran out and immediately drew some, just as generations before her had done.
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This was the last time I saw her truly blissful the rest of the trip, however. Her latest hospitalisation poisoning revealed an allergic reaction to sulfate, and she had neither the strength or vision to read every single ingredient on food at the grocery store. By the way: nearly everything contains sulfate! Our mutual friend and I spent a good hour with her, scanning ingredient lists for nutritious food that her body could safely process - a much more complicated process than friends' helpful suggestions of "just eat healthy vegetables and protein," or worse, "if you go vegan that might help."
You see, even healthful vegan eating has its own hierarchy in J's body mechanics, and right now her immediate needs are for fats and oils - yes, those of animals. Her kidneys cannot process protein normally, so a few bites of beans can cause major problems. On top of lupus, J. has a genetic condition that makes her ineligible for a kidney transplant, so she needs to be very careful about balance. She drinks a daily shake of clay and diatomaceous earth to assist her kidneys in filtering out toxins. This of course can result in intestinal pain and constipation.
"It's basically Choose Your Own Organ Failure at this point," she explained. "One doctor says my blood pressure is too low and I need salt for my heart to function. Another doctor tells me too much salt can tax my kidneys, which can kill me. I'm a vampire. I live in the dark, I have to drink these dirt shakes, and I feed upon bread and white rice."
Friends came through to help her clean the house and sort through food and beauty products that contained sulfates - nearly everything in her cupboards. J's strength and mental capacity to handle everything was dwindling. Every few minutes her phone pinged - because on top of all this, she is one of the head organisers for a ComicCon. Her illness complicated matters there, as well. At one point she had to arrange for face masks and a wheelchair just to be present for that.
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On the final day, I accompanied her to two separate hospital visits and an optometrist appointment. She cannot drive long distances because of her health. After the medication poisoned her, she had also recently wrestled with temporary blindness. The optometrist visit was necessary to clear any possibility of glaucoma and to make sure she was legal to drive.
Her friend drove us to State College. Her reliance on others can cause anxiety, especially if someone is running late to run her to an appointment. A phone call to the medical centre for directions left her with a mild panic attack as the receptionist told her that her doctor was located in the oncology ward - triggering her fears that she had cancer on top of all this nightmare. Already stressed to the gills, each further interaction with doctors and nurses left her shaking and terrified.
A doctor with the bedside manner of a drill sergeant nonchalantly suggested a bone marrow biopsy, given that her immune system was shot. By the way - both of these were surprises! After telling J. to her face that she probably wouldn't need a biopsy, he scheduled one anyway out of protocol without informing her. When the nurse asked her ten minutes later when a good day might be to have her bones scraped, J. began sobbing. The blood work, already uncomfortable, happened right after this. She then had to travel to another medical centre to give a urine sample. The nurse scribbled her last name on the specimen cup in Sharpie, just like a Starbucks latte, and directed her to the bathroom.
"Well? Might as well document me peeing, too! Just another part of my day." J. said. This process is messy and clumsy for women, and any remaining shred of optimism goes right out the window when your urine sample cup gets plunked on a sink next to that of another sick person.
I asked her if she usually faced these hospital visits alone, to which she said yes. As we waited for her biopsy schedule to be worked out, I noticed a little Alice In Wonderland doll hanging on the nurse's computer monitor. I asked the nurse about it, and she said, "oh, that's just a voodoo doll." Voodoo in a hospital sounds perfectly reasonable. I entertained a few fleeting thoughts about using it on Dr. Drillsergeant. Maybe a nice charlie horse.
We then travelled back to her place, where her brother was waiting to drive us another 100 mile round trip for an eye appointment set up by J.'s very kind friend. I noticed a taxidermy deer head stuck on the wall in the doctor's office (always a good sign). At least here was good news: J. was cleared for legal driving. This would alleviate some of her alienation and dependence, but for how long, is anyone's guess.
Total round trip travel distance for J. just to get basic medical care: 150 miles.
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J's situation is dire: between needing a safe place to live, transportation to medical care, and her general well being. We hope these photographs let other people, in similar situations, know that they are not alone. One of the most frequent frustrations sufferers of autoimmune disorders hear is "but you don't LOOK sick." I heard accusations of my friend being a "hypochondriac," that it was "all in her head," that "if she had just listened years ago she wouldn't be this sick now." These are incredibly damaging lies and misunderstandings. For an affliction that has no real definition or predictable course, adding "psychological gaslighting" to the growing list of harmful things is cruel and heartless.
Something really needs to change - in my friend's life, in society. There is no reason why basic medical care for someone this ill should be this difficult. The sheer vulnerability and strength I found in my friend's civil wars with her own body and home were powerful and heartbreaking. I felt pulled between detached voyeurism in watching a nightmare play out in front of me; and deep empathy, wishing I could whisk her out of there myself to a good place. J.'s willingness to allow me to witness her life and create photographs of her most vulnerable state is incredibly moving, but I want to do her justice with my work.
I ask that anyone who is willing/able to please contribute to her GoFundMe page, or purchase much-needed (or wanted) items from her Amazon wishlist. There's everything from urine sample cups and surgical masks, to things to keep her entertained during her convalescence, to necessities for a new home when she is situated. The prison of lupus is unpredictable and inescapable, but she deserves peace of mind to ease her body. It is an urgent situation.
Please consider donating to her fund or treating her to some comforts. I saw firsthand what those gifts meant to her, and she is incredibly grateful for any kindness.