I stopped believing in souls strapped to a gurney in a recovery room, alone, coming back to myself after a seizure. It’s easy to not be you anymore in those moments of suspension. You is a fragmented idea, a shivering collection of colored shards that eventually you must arrange into a frame again. Until the next time, when the colors rain down again in bright lights against your vision. I vividly recall the first timeI read neuropsychologist Paul Brok’s book where he wrote, “When we see the brain we realize that we are, at one level, no more than meat; and, on another, no more than fiction.” Yes. I thought, that’s it. We’re story telling meat. There is a bit of freedom in that. Every time the frame falls, if there is a bit of me that I didn’t quite get right I can discard it as I try to get closer to the ideal I present. I can carpenter a narrative I can get along with. But when I was first waking from that seizure I had not read Broks, nor Oliver Sacks, or any of the other numerous books and papers on neuroscience that have since convinced me of my deep humanity and-for lack of a better word-sanity. I was confused and small and scared and a lot of other ands that come with being young and sick and misunderstood. A middle aged nurse towered over the bed like the worst sort of childhood monster. The kind that presents in a caretaker role, but quickly shows herself to be another thing entirely. She pointed her finger at me and announced I was a waste of time. I was shocked. What did she mean? I felt terrible. But apparently since nothing had shown up on her EEG they were deciding I’d made the whole episode up. I was being discharged with no further research. In her defense, people dismissed me for years after that. I made it easy, I suppose. I was a poor punk kid with shredded clothes and at times a shaved head, other times bright green Final Fantasy inspired tresses. I generally didn’t mind not being taken seriously. Generally. The words added up. There was a period of time I went to the ER afraid I was having a heart attack. It turned out to be costochondritis, but there were plenty of medical staff that made sure I knew I was rather silly for taking it seriously. Still others didn’t even consider the inflammation in my ribcage- or later, the slipped ribs, and declared I was having anxiety attacks. And after awhile, maybe I was. I took Xanax and anti-depressants that did not stop my heart from racing, or my chest from aching, or my depression from depressing. No matter what symptom I presented with, from GI tract bleeding and anemia to rashes that steroids can’t destroy, the conversation would turn to anxiety- and somehow, anxiety was minimized. If, as a medical professional, you truly believe someone is presenting with pseudoseizures because of anxiety, I strongly believe you should be that much kinder to them. Instead, time and again, my experience showed the more they believed the cause of my distress was psychiatric, the more likely they were to be short with me at best or outright mean at worst. Our meat is telling our stories- the hitched breath as one tries to explain the radical feeling of CSF (Cerebrospinal fluid) dripping inside the skull when they don’t know what CSF fluid is doesn’t make someone is a liar, even if they are wearing a ratty sweater and Doc Marten boots. Rare disease is often misdiagnosed many times. My heart beat as fast as a rabbit’s as I’d change out of crinkly paper gowns and see myself out. I tried to be practical. When enough test results come back normal and you’ve had enough stern people tell you “it’s all in your head” it begins to sound reasonable (although everything is in one’s head- your YOU- the brain- is in your head, but that’s another argument). Even my process of making myself when I fell apart became suspect. Doctors would send me to therapists who would send me to neurologists who would send me back to primary care and the circle spun on. I argued the benefit of dissociation with people who preferred me to pick a spirituality. I could not agree to forgive as the way to heal. I didn’t understand why my past would be brought up when I needed a migraine medication. Its meat in there, I’d repeat to myself. Meat. Fragile, complicated, weird, electric meat. It doesn’t need to forgive to have a migraine or not. It’s made other pathways out of those stories. I deeply believe one of the worst things someone can do is make you doubt your own experience, and that is what these doctors did year after year. I could not let go of the wrongness of me. I tried to be a dutiful patient. When a doctor asked me to explain why I was only seventy nine pounds, I said food felt like poison. It does feel like poison. When I eat, my stomach bloats. I get cramps, and at times I vomit. It worms its way slowly through my intestines, inflaming all the way to its bloody conclusion. That would be enough to put any pragmatic person off most food. I was diagnosed with anorexia and went through an intensive eating disorder treatment program. I gained weight, painfully, but afterwards I was still sick. I was afraid to confess my symptoms in case it would mean another round of eating disorder treatment. I don’t think I would have gained weight on my own, but knowing what I do now about the medical cause of my digestion problems, I would definitely choose another path to weight gain. My shoulder dislocated. I could see it hanging weirdly in the mirror. I cried to see it at the time, unused to the angle. On my medical records the doctor wrote I sprained my shoulder because they refused to believe I could dislocate it without an acute injury, despite being able to see my arm hanging oddly right before their very eyes. I’ve had one long term doctor (before the one I’m with now). I wish I could go back in time and read her medical records so that she didn’t have a chance to make so many. A brief sample: Vital Notes Pink hair in child’s pig tails I could dive into the fact that at the time I was attending cosmetology trade school, known for producing all kinds of questionable hair styles. I could say it’s impossible for my hair to be in child’s pig tails as I was an adult. But instead I’ll bring up the next sentence and the ramifications. no conjunctival/scleral injection or discharge Wonderful! I didn’t have pink eye! But I do have blue sclera. Something that the doctor missed having honed in on my “pink hair in child’s pig tails”, even looking at my sclera to rule out pink eye. Blue sclera is characteristic in connective tissue disorders. It would be another nine years before I would be diagnosed, for a total of nineteen years from the first time I presented with symptoms to a medical professional (not counting the early childhood allergic reactions to such innocent things as immunizations). Towards the end of my time with that doctor, I requested an ANA test based on my cousin having a positive test. When mine came back positive, the doctor told me it didn’t matter what I have. She wanted me to go back to cognitive therapy and stop trying to find a medical diagnosis when a psychiatric one suited her just fine. I researched more. Of course I did. It’s what I do. If I was truly fainting out of a post traumatic response I ought to be able to stop it by rooting out the memory and staking it like a physic vampire, right? I made charts, diagrams, notebooks of thoughts and symptoms- the irony is not lost to me. The notebooks could be used as evidence of insanity. But! Let’s point to Oliver Sacks alone. He had stacks of notebooks. Having obsessive notebooks to one therapist could mean my being mentally unsound, and to another, simply a writer. My doctor moved into another practice, and I found myself without. I’d always sought out female doctors. However, armed with medical records detailing my hair evolution, when a specialist I liked referred me to my current doctor, Dr. Thomas Gray, DO, I decided to give a man a chance. I was scared. I’d just read my medical records. What was he going to think of me? I didn’t even know what I thought of me anymore. The cousin who’d had a positive ANA had recently been diagnosed with Ehlers-Danlos syndrome, a rare genetic connective tissue disease. Whenever I’d brought in family history to other doctors, they’d shrugged it off. Why was I putting myself through this again? It’s always because of one reason: I feel like death walking. And so, there I was. New doctor. Old heavy weight running through my mind of the glass shards falling down around my non soul; his nurse called me back to the patient room. I eyed the patient bed. Nope. I’m not into it. I sat on a chair, and worried the edges of my Moleskine notebook between my fingers. My doctor is tall and thin, with bright curious eyes and a ready laugh. He’ll sit wherever. The chair kitty corner from me? Yes. The edge of the patient table? Sure. The foot rest of the patient table? If it’s convenient. He listened. That was the first thing. Listened with his whole body, his eyes engaged, leaning forward. After all the listening, he examined gently. Most of the time people hurt me. Oh, they don’t mean to! People with connective tissue problems are fragile and sublux easily. He noted my hypermobility that very first visit, and explained its potential significance. No one else- not any of the physical therapists, emergency room personal, medics, doctors, specialists of assorted variety had ever done that despite me being a 9/9 on the Beighton scale. He wrote me a prescription for aquatic therapy right then and there. He told me he didn’t know much about Ehlers-Danlos syndrome, but he would refer me to a geneticist to get tested. And he told me if he couldn’t find a specialist who would help me, he was willing to learn. Let me repeat that. If he couldn’t find a specialist who would help me, he was willing to learn. It took nineteen years to hear those words. It’s not about having all the knowledge, although of course Dr. Tom impresses me all the time with his skill set. It’s about how he applies his knowledge. He decides to reach out to other physicians. He decides to research; ask questions, actively listen. He always wants to find the next solution. It’s a choice to see someone at their worst and see past their frizzy hair, to the fatigue beneath, and then perhaps it’s a curiosity in a doctor to chase after why the fatigue is there. It’s so much easier to say its only anxiety and ignore everything else. I’m not sure why it took nineteen years to find a doctor who had that combination of curiosity and scientific nature but in rare disease, the statistics reveal I’m not unique. Far too many suffer years with needless pain, being told their symptoms are caused by conversion disorders. I hope more people like Dr. Tom find their way to medical school. We need them. In the year with Dr. Tom and the EDS specialist he referred me to, Alena Guggenheim, ND.; I have had a positive tilt table test. I have Postural orthostatic tachycardia syndrome, which accounts for the rabbit heart rate and fainting spells. He’s helped me get braces for my dislocations. I’ve had physical therapy. I have had a gastric emptying study which found gastroparesis. I have had an echocardiogram so we know my mitral valve is okay-another common EDS comorbidity. I had an abnormal CINE MRI that we’re working on now. Because of my EDS diagnosis, I went to an EDS knowledgeable optometrist who diagnosed me with idiopathic intracranial hypertension. “It’s called idiopathic because we’re idiots who don’t know why it’s happening,” the optometrist quipped. Left untreated, IIH could result in going blind- and in fact, I have already experienced a bout of temporary blindness. The best part is I can go to Dr. Tom with my weird electric meat and its stories even as the frame is falling, when we’re changing doses of medication to lower intracranial pressure and tell him how it feels without the fear. The fear of being sent away, to be someone else’s problem, because obviously what I’m describing is insanity. I can blend the stories together because that is what humanity is, after all- whether the label is depression or dysautonomia, it’s coming from the same body. Part of it will become fiction, and part will stay in my diagnosis; in my mind as it races through its questions and in my doctor’s listening.
I hallucinated a great demon, with horns, a mouth that sought to devour. I think I must have called out, because my friend held me on a roof top in Chicago while I tried to fend the beast off. I can feel the wind in my mind, still, if I close my eyes. If I focus, I can bring the demon here, though now, years later the beast is without solid form. More like a hologram, less terrifying, but a reminder of what the wrong medication can do. Later, I scrawled in large unsteady letters across a page in my notebook I do not want to take this Depakote. I stopped taking it soon after. It would be years before I was able to get medication for seizures again, but the image haunted me. The idea that the mind is that fragile, and we can bring it to a disinterested neurologist who will not see the beast and not feel its breath. They will say to give it another month. Let the body adjust. There is no adjusting to hallucinations. They are real, and they are not. They panic in insidious ways, in dark corners of the mind. They force you to ask yourself… Am I mad? And they cause others to say… You are mad. And the sad thing is, when that pronouncement comes, they leave. They don’t wait for that month to see if stability comes. They leave. That was the lesson of Depakote. My mind, I’m not sure where it was that year. There were weeks I seemed to have seizures several times a day. I lost my speech. I tried to talk and my words were somewhere I could not access. The only place I could find me was the piano. I could play the piano, as well as I ever could at any rate, and I could sing. But I could not speak. I didn’t have health insurance back then, so I didn’t see a lot of doctors. I would go once in awhile when something big happened, and be told I had anxiety or I had epilepsy or a seizure disorder or anxiety again… And I lost the relationships I had, to people who were well. To people who never felt the breath of a demon by way of Depakote. There was nothing I could say, because I had lost my voice. After that, it isn’t too hard a push when the people you care about say you are crazy. Maybe? You think. Maybe. That is a subjective state. It is whatever is misunderstood said by unqualified people to dismiss you. I am unsure if it matters, now, as all those people are no longer in my life. All that is left is me, and my eyes which I close to recall the demon. I moved across the country. I still didn’t have health insurance, so I suffered with allergies until I could no longer cope with it. The doctor was an older man. He accused me of being anorexic, that is the word, accused, with a firm tone. I denied being anorexic, and asked for allergy medication. He repeated that I was anorexic, and then he told me he refused to give me allergy medication unless I agreed to go to therapy for anorexia. I was using up all my money seeing him! I didn’t have money to go to therapy! I didn’t believe I was anorexic. I was underweight, but plenty of my family is small and underweight. I told him that fact. He stood firm, and I left his office with nothing but a bill and frustration. Oh, and my allergies of course, those too. I think of this doctor sometimes. I wish I could have a cup of tea with him because I do feel he was trying to help me, but that was the worst way he could have gone about it. That encounter happened when I was about twenty two years old, I’m guessing. For him, sending me to therapy for anorexia was obvious, maybe even life saving. For me, it was cost prohibitive and he was not addressing the main complaint I was going to him with. I think most people assume everyone has a support network they can extract resources out of, but some people, like me, do not. For a do- over, I would like to offer him honey for his tea, and then tell him of course give the poor girl allergy medication. Then, instead of ultimatums, and rushes to diagnosis, suggest testing. I couldn’t afford the testing back then, either, but at least it is more practical then a rushed psychiatric diagnosis. The bark dust blowing onto my apartment lawn caused my eyes to swell and I cursed that doctor, and I poked at my ribs. Again, that burning question. Am I mad? He’d set it to me again, and it churned in me for another few years before I’d go to another doctor who would affirm that yes, yes. I am. Mad. I pleaded with her. I tried to explain myself, my low weight. It was a no go. She was convinced I was anorexic, and I was lying to myself. Was I lying to myself? I try to be honest with myself, to the point of pain. Beyond pain, I chase consciousness down, I want to know why, and how, and who, and beyond the who because I remember what it is to be beyond, pushed down. In the ether. Where the shadowed hallucinations lurk, and the you is a suggestion. Saying that to the wrong person is dangerous, but I’m known to play with fire. I get burnt a lot. I’m stubborn, I learn through scarification, I suppose. I tried to explain sensations running along my brain, in a migraine, the colour of aura. I’m not sure why it was important, but the doctor said my migraine was stress induced, or from PTSD. I sat with that, in my darkened apartment. Where was the stress coming from? I argued with myself. Was it PTSD? I read books on migraines, on neurology, case studies. I read books on psychology. I finally braced myself, and read books on anorexia. They didn’t fit right into my puzzle. The doctor kept mashing the piece in, but besides the obvious skeletal frame the rest just seemed off. I wish I was a perfectionist. I am haphazard, wild haired, a deep into the night reader with dark circles carved beneath my eyes. I have stacks of notebooks and empty Lego cups filled with pens, unfortunate piles of hoodies on a chair so I can easily don or shed them… I am a reflection of my internal noise. Tornado like, I revise myself in a windstorm of energy and then the calm of the storm. While, like most anyone you could ask, I would like to be more attractive, I don’t fixate overmuch. I don’t fuss in the mirror for hours over a flaw. I’m aware of what they are, but whatever. I spend more time thinking about other faults, really. Like, how dare I not be better at understanding some arcane scientific thing or why the hell am I not Lindsey Buckingham? I watch him play the guitar, and I weep for his musicianship. I don’t look at the beautiful women and think seriously that I could starve myself into being beautiful like them. They won the genetic lottery of beauty. I knew early on I had lost that battle, so I turned my attention to being interesting. That was what I could be, and if I fail at that… well. That is truly a shame. None of these points mattered, and I found myself in an eating disorder treatment program. The doctor had convinced me that I was on the verge of death if I did not go. I was too underweight, too sick, I didn’t see it because I was mentally ill. I talked to my assigned therapist, tried to explain myself. I combed through my history for why I would possibly be anorexic. I came up with a theory involving the prophet of the religion I’d been raised in and how they’d had specific rules for how and what to eat. I realized I never ate pepper because the prophet had said it was forbidden, even though I’d left the church as a teenager. Diligently, purposefully, I poured pepper on my food in the hospital to prove to myself I would not be held hostage by old beliefs. There had been rules about heavy creams and sauces, basically any extra item you put on food to enhance pleasure. I added extra pats of butter to my pancakes, pats of butter in addition to the ones I was required to eat by the program. As I ate, I noticed a strange thing happening. My thoughts increased. It was as if a fine web was growing and stretching, connecting. The emotional stuff I loathed. Loathed. I hated the parts where we were supposed to discuss our feelings, one by one. I didn’t feel anything much, at least not anything much I wanted to share with a group of strangers. If Depakote taught me anything, it was that sharing is not safe with friends and so it is definitely not safe with strangers no matter how many times I’m assured in soft tones that it is a safe safe. Bullshit. No space is safe unless you are the lord of it. And that is bullshit too. Because you aren’t in control of you. At any time, your vision can just go, your body can just go into a seizure, your voice can not come out, your consciousness, your you… you can just not be you at all. No space is safe. So I punted. I said the minimum I had to say. I listened to others who got a lot out of therapy, and that’s great, but therapy for me… It’s a nonstarter. I think the closest I’ve gotten to therapy that has felt real has been with Dr. Tom when I asked him what I should do if I want to kill myself because I’m in too much pain, because I’ve read studies of others in my condition killing themselves, and he said to me, “Just don’t do it!” And we laughed. Because no space is safe, and no space is sacred, so we may as well laugh at it. My stomach hurt so badly as I gained weight. I’d throw up, and then have to make up for it with extra Ensure. It was torture. I decided I didn’t want to die, which is why I was drinking the Ensure, because I wanted to see what happened next. You can’t see what happens next if you’re dead. I gained more thoughts with the weight, but I lost the ethereal pure feeling I had with being so underweight. It is a fair trade, now that time has separated us, but it feels almost spiritual to be that underweight, because the mind is tamped down and your hands are tingling with lack of oxygen, and you feel- light? Made of lightness. It is intoxicating and hard to give up that feeling. Like a drugged space. So that is where I am unsure where the madness and the physical meet. I think they are linked, but perhaps anorexia ought to be expanded in definition outside of the stereotypical image. It made me harder to treat because I did not respond to any of the stuff besides the cold clinical facts- I wanted to turn my brain on. I didn’t know it was dialed down. That was wild information to me. I didn’t care about anything else, the colouring pages, the circle of feelings, the endless asking for my emotional outpouring. I’m just not built that way. Tell me what is better than my current state, and now we’re talking. After I gained the weight, I stopped reporting symptoms to my doctor because I did not want to go back to therapy. I still threw up. It wasn’t on purpose. I dug through my mind. It definitely was not on purpose. But no one believed me. My stomach swelled after I ate. I remembered why I stopped eating so much to begin with. Pain, nausea, GI bleeding. I’d feel full after eating the smallest meal. I wondered if it was all in my head, because that is what I’d been told over and over and over. I was mentally ill. This was stress. I ate gelato almost every day to keep my weight up to avoid having to go back into the eating disorder treatment program. Welcome to recovery.
“Tell me how this all happened.” the specialist asks. I toggle to the screen with visit after visit, all my doctor’s crisp notes. “I forget the order, details. If you read Dr. Gray’s records- he’s very good at writing down exactly what happened.” Far better than me, and less likely to get hung with the tag unreliable narrator. We’re all unreliable, especially as time barrels on. The moments of acute pain magnify, the smaller subtle points where we thought a treatment might be working becomes overshadowed by the knowledge that it ultimately did not. And then all that comes out is, nothing worked. Which isn’t strictly true. Things work until they don’t, and then we shrug them off like old skin and leave them in the dust, snake like, forgotten, until prodded, “Are you sure that is how it happened?” Hell no. That’s why I found someone I trust to measure the moments. To take the little histories so that when the big histories come up it isn’t really up to me, because all I remember is- Fourth of July, an angry red swollen breast. Maybe if I ignore it, it will go away. I don’t want to deal with it. I don’t want to be annoying, or be annoyed. I tell myself I’m overreacting as I poke at it, alarmed. It doesn’t go away. It gets worse. I suck it up and see the nurse practitioner at my doctor’s office, who thinks I should get imaging and take antibiotics. I see my Ehlers-Danlos specialist who looks at it even though it isn’t her specialty and she agrees with the nurse. I take the antibiotics, but it appears my breast has it out for me. The red swollen lump grows. I call my doctor’s office. He thinks I should go to a breast clinic right away. Referrals are made. None of the breast clinics can see me in time. I have to go to the E.R. which is like Dante’s Circles of Hell to me. I loathe the E.R. I pull myself together, and there I am in the E.R. The cold gown, the hard cot, the incessant beeping that makes my skin crawl. The histories, of course, where I stress caution to doctors who make a living being bold- they must be bold. I know that. I hate knowing and the juxtaposition of the knowing about my own histories of other hospitals and bad reactions and cavalier doctors until things go wrong and then. Memories of angry nurses, mad at me for spilling blood or inconvenient seizing or unexplained somethings. More beeping. Curses. Blood pressure readings. IVs and the tape that I know will leave a welt but there are enough battles so adhesive irritation seems like a minor one. The waiting. The sounds of other people who maybe aren’t quite as stoic as you, or maybe they just got the worst news or their life. The sound of another ambulance coming in. Life and then… I have an abscess. They found more deep in the tissue. The E.R. doctor is calling a breast surgeon. The word surgeon makes me panic, but I still try to keep that old style Canadian back of the woods stiff upper lip, but all my thoughts are run on sentences. All my thoughts want to run away from the hospital. I don’t trust anyone here, sorry- My mind is back at another hospital and another surgery where other cavalier doctors became less cavalier as my stay extended into the ICU. The poor anesthesiologist who checked on me every day. It wasn’t his fault. I hope he knows that, really, really knows. My cell phone rang. “Where is my patient?” Oh, currently battling becoming hysterical in the Lands of Hospitalia, otherwise known as Dante’s Inferno. No one wants to say that. Although if there is anyone to say it to, he’s probably a good one. The crisp notes he makes aren’t likely to include Patient hysterical for no reason, absolutely unreliable. Call in the white coats to sedate the little mad one, stat. The second I heard Dr. Tom’s voice, I felt relief. In all the chaos, here was someone who knew stuff about my stuff, and had that whole believably thing down. Holy shit. And he was calling me? After hours? In the hospital? Was I hallucinating? But I wasn’t hallucinating, I was laughing, somehow, he was cracking jokes and it worked. And then in wonder, I took in the miraculous sight of the E.R. doctor talking to my primary care doctor on my cell phone. It was all very surreal. He was going to be there for any decision about surgery, and I could stop being so defensive. Someone else had it taken care of. I’d never had any doctor do anything like that before. This is a Big Moment. I remember kind of slumping back on the E.R. cot, with the reassurance that Dr. Tom was going to call me back in a little bit, and blinking back tears of- what. Being able to shelve my scattered pub med researched brain for someone else’s superior-trained, way sharper one who was on my side. More than relief, because of all the years of things being so out of control wrong, maybe that’s why it was such a Big Moment. But that isn’t something I told the specialist for the history, even though it’s the most important. More important than abscesses. It is people choosing to be more than they have to be for others, for no other reason but kindness and curiosity. I don’t believe in magic, but it is close enough to that. Big Moment. Back to the history that supposedly matters… Surgery was opted out of for the moment because of where the abscesses were. I had to get a mammogram and an ultrasound. The mammogram goes down first. Two nurses, the machinery, and me. I want to be clear that being honest about this one ghastly experience should in no way detract from mammograms in general. This happened under strange circumstances, with my strange body, and I will have mammograms again in the future when my doctor tells me I need to. They are important diagnostic tools. They save people’s lives. Yet this one particular experience, if I am to share my history… I remember. After, at my doctor’s office, he was training a doctor. Explaining to them what had happened. He read: Gushing blood. I said, all bravado, One day we’ll laugh about it. He looked pained. That day wasn’t yet. It was terrible. Terrible. When the machine compressed my breast, the abscess ruptured and it was a blood bath. I’d never seen blood spray from a breast. Now I have. They sat me on a stool, dizzy, to take the rest of the pictures, mopping at the blood between images. No pain medication. No wound care. Just blood and gore. It was something. A Big Moment? After the mammogram, it wasn’t over. I should have said this is over. But I had to tough it out, shell shocked, down to to the ultrasound where a technician pressed their wand into my deep wound. I held my breath. I think I blacked out for a moment. How do you describe that bit of medical narrative? Dr. Tom said it was terrible to the doctor he was training. His face mirrored what I try not to. But I am telling you. When he said it was terrible, yes. It was Terrible. I think somewhere after that I had more antibiotics? I don’t remember exactly. Time. This is the little moments. How many rounds of antibiotics? Probiotics? I ate non dairy yogurt. Who cares? I had a fine needle aspiration. I printed out a card from the Ehlers-Danlos society that explains how people with EDS may need more local anesthesia, or have issues with it. I didn’t remember what happens to me with local anesthesia. I know my mother has trouble with it wearing off before a procedure is done. I was concerned that would happen to me. I’m already in so much pain. I’m not keen on more. I tried to show the nurse the card, and tell her my concerns before the procedure. She wouldn’t listen to me. She refused to tell the doctor who was going to perform the FNA. I asked if she could call my doctor, then. She declined. Her irritation was obvious as she set up for the procedure. She left the room and I called my doctor’s office. The circus that came next is a bit of a mess, so pardon me for details. There was phone tag between the hospital, me, and my doctor’s office. The hospital receptionist tried to say my doctor’s office had no doctors’ line to call. It does. Once again, Dr. Tom talked to a doctor for me on my cell phone. I heard his voice, and the relief and magic was there again. I didn’t like having a negative interaction with the nurse but it wasn’t her breast a needle was about to be plunged into. A girl’s gotta do what a girl’s gotta do. I’m happy to report I was numb as I watched the needle on the monitor. Thank you. I went to the breast surgeon’s office. I was diagnosed with granulomatous mastitis. They told me to take a high dose of ibuprofen and put a heating pad on my breast. I went to the breast surgeon’s office several times after that first visit. I had multiple ultrasounds and physical exams. They wanted me to wait it out. Did I mention I had a hole in my chest? A deep, bloody, raw hole? It hurt, in that throw away the pain scale kind of way. I tried the heating pad. It was torture. I tried the ibuprofen. The ibuprofen made my stomach hurt- I have gastroparesis and whatever benefit I may have gotten from the anti-inflammatory was offset by nausea and vomiting. Waiting it out did not seem like an ideal option to me. I went to Dr. Tom with my hole in the chest dejection, layers of hoodies hiding the mess of my breast. I shed layer after layer, peeling my shame, explaining the failures. And he saw the wound. “Does it hurt?” he asks. No scale. No qualifications. “Yes.” I say. “Yes, it hurts.” “You have a hole in your chest,” he observes. “It looks like it hurts!” Another Big Moment. He gave me pain medication. He looked up what we could do besides nothing. He found prednisone and methotrexate. We needed a rheumatologist. Dr. Tom made the referral. I was- what is the word- stunned- when I was informed by the rheumatology clinic that because I have Ehlers-Danlos syndrome, none of the rheumatologists would see me for my autoimmune condition. Dr. Tom wisely pointed out that if they didn’t want me, we didn’t want them. He filled out paperwork for my first choice rheumatologist, Dr. Shawn Macalester DO, who is out of network for me. Little moments, waiting, waiting, for approval or denial, and obsessively googling the clinic doctors who turned me down. Finding out they turn down every patient with Ehlers-Danlos syndrome. I wondered what they expect EDS patients with autoimmune conditions to do who are stuck with only them as options? No wonder some people turn to snake oils and crystals instead of prednisone. They literally have no choice. I understand that sometimes the best thing a doctor can do is say, hey, I can’t do xyz because I don’t have the experience and could hurt you. That happened to me with a kind neurosurgeon and tethered cord surgery. I respect him for knowing his limitations and not being reckless. But a whole practice of rheumatologists opting out of patient care for anyone with connective tissue disease? Come on. That’s like if I would have said, as a young hair stylist, sorry- I can’t do perms. I wasn’t around in the eighties. I’m afraid I’ll melt your hair off with the solution. Technically that could happen. Or I could do my homework, get a mannequin head, and practice rolling perms. I learned how to do it so when little old ladies came in I could give them perms or wet sets or what have you. I learned how to style African American hair. I learned hair extensions. I didn’t tell a client No, you are too hard because that’s lazy cosmetology. And oh boy, did I see others do that. It’s fine to not know. If you want to learn, there are resources. Physicians can go to the Ehlers-Danlos Society website and sign up to Project Echo for free. It seems cruel in a world where insurance dictates you must go to certain specialists that whole practices can opt out of even consultations, leaving patients who aren’t as tenacious or have access to the amazing primary care doctor I have to suffer with diseases on their own. To insult those same patients for turning to alternative medicine is cruel. Step up to the plate and bring a solution or you have no right to be condescending towards them. Ask yourself what you would do? Would you turn to the dark corners of the internet seeking out ways to bring painful inflammation down? Would you do almost anything to stop abscesses from boiling over? Would you fall for a comforting lie? I’m not too proud to say that in desperation, of course I would do desperate things. That becomes a Big Moment, where one need not be. And how we fail disabled people as a society. Waiting for them to wade into the murk, push them down, drown. Easier than wading into the dark waters of I don’t know with slides of cells, to stay in certainty. But certainty is stupid, I’m telling you, certainty is certain to be hiding you’re wrong, you only saw one piece of the picture so far. Pictures change with time. We learn more things, we expand, even if we aren’t looking- but when we do… It is a bit better. I’d had a few other offices decline to see me by this point, so I called Dr. Macalester’s office and asked if he would see me with my conditions. He said he would, that if he didn’t know something he would try to find someone who did. Yes. That is the stuff. The kind of thing I used to tell clients in my chair when they showed me something I was baffled by. What happened next- Time is blurry, like my eyes. Even all the things I’ve said so far, maybe it could be shifted around like a rubik’s cube. It happened, but in this exact order? Maybe, again, look at my doctor’s notes if you want precision. I’m not as precise. I’m more like historical fiction, where for emotional impact battles may have to be moved around. I don’t know. What happened. It was Covid-19 time, so we did virtual appointments. I made tea, very important, beforehand. I try to write things down in a little moleskine notebook so I recall what I want to say. I’m bad on the phone, who knows why. I’m probably bad in person too. I lose my train of thought, and I think of the phrase train of thought and suddenly I’m picturing a train barreling through the room, smoke billowing, the noise- yes, this is why I need to write things down. Dr. Macalester is calm and easy to talk to, which is good for an imagnative and awkward person such as myself. He throws in fun details about the history of drug development to ease the transition to methotrexate. For a geek like me, getting to hear things I don’t know presented in interesting ways is basically catnip. We tried the pills first. Prednisone and methotrexate pills. Little moments of side effects, which add up to a Big Moment- realizing methotrexate drops a dark cloth over my brain, stifling thoughts in a way no other drug I’ve been on does. I curled on the coach, sucking on my zofran, throwing up anyway, touching my tongue to mouth sores and leaving tarantulas of hair behind every time I moved. I had a phone call visit with my Ehlers-Danlos specialist, Alena Guggenheim, ND who cheered with me that I’d managed to get Dr. Macalester. She suggested ginger and some other things I’m forgetting as it’s been awhile ago, but overall the memory is of her caring, energetic voice- such a wonderful thing to hear during the drudge of months of quarantine. Dr. Macalester gave me MTX support, which helped the mouth sores, and suggested trying methotrexate injections. Injections! Oh, I was a terrible coward when I heard that. Growing up, my mother made her fear of needles mine. She did everything to avoid us getting wounded by a needle. Now that I know she has Classic EDS and her fragile little veins tend to rupture I get where she got her fears. But it is a bit different, injecting methotrexate. In bizarre world, leaving quarantine to go to Dr. Macalester’s office to learn how to self-inject was an adventure. I was going to see other people! Oh! Real people! His nurse was very kind, explaining how to pinch my skin and fill the needle and all of it. But to be frank, I missed some of the lesson because I was buzzed simply being in a room with another lady after months and months without. Her voice! So cool! Her eyes! Oh my GOD! I’m an introvert, but even to me, it hammered in what social creatures humans must be. I ended up having to watch videos on injection on the internet. Completely worth it. I quickly learned my preference for the needles that came from Dr. Macalester’s office. His were sharp and went right in, and pushed in much easier. The ones my pharmacy sent sucked. It truly is the little things. With methotrexate come labs. The idea of going to the regular lab grossed me out, but thankfully I could go to Dr. Tom’s office to get my blood work done. Leaving my quarantine feels naughty, a bit, even though I only do it for doctor offices. People! Yes! Go ahead and blood me so I can look at you! I even enjoyed the color of Dr. Tom’s wall. It wasn’t my wall. My stomach began to hurt more and more. Then in a way I couldn’t ignore. I started taking medicine for ulcers. I had to stop eating tomatoes, which seems little, but made me realize how much I like tomatoes. Raw, roasted, sauced. Alas. We decided to finally taper off the prednisone so I would only take methotrexate. I got another abscess. I closed my eyes, wanting to unfind out about it. There is nothing more frustrating than an abscess, unless it is an abscess in a location you’d rather not show anyone. It was blood work time again, so I considered my options. Ignore it and let it fester? Yeah, because that always works out so well for me. I dragged myself to Dr. Tom’s office. I got my blood taken. I tried to take my pleasure in his wall, in the presence of another person. I confessed to the nurse that I needed to see Dr. Tom because I had an abscess. I sat in the chair, uncomfortable. He arrived. Time is like this for me, past and present tense, slippy. It’s fine. Slip through it. I acknowledge that I have no dignity left with him, which is good. Always good to not bother with social constructs of dignity and shame with your doctor. They get in the way, they waste time, they- I noticed Dr. Tom was wearing black scrubs and a mask. He usually wears regular street clothes. Scrubs look more comfortable. I think if I were a doctor I would never not wear scrubs. I think of everything but the thing I have to get to because I hate getting to it sometimes. “I have an abscess on my labia.” The great thing about Dr. Tom is he isn’t a overreacter or an underreacter. Finesse? He got to work trying to find a gynecologist or female doctor who would drain it. If he couldn’t find someone, I would come back after his last patient of the day and he would do it. On one hand, damnit. Not a pleasant time, but as he said, we’d have all the nurses there and make a party of it. Why not. If you’ve never had an abscess you may not know why party is an apt- even if dark humor- sentiment. The relief of draining it… That is worth celebrating. So we tried the other doctors. He called around, I called the urogynocologist I’d went to last year. Her receptionist informed me she only did urology. I sputtered into the phone, remembering the pap smear and how she’d agreed to be my gynecologist. Oh well. Thus, the end of my doctor’s day came up and I showed up to make it a bit longer. Have I told you how much I appreciate someone who would do that? I do. And appreciate the careful cuts, the culture, the lidocaine and kindness, and making me feel like I wasn’t gross… The nurses and their efficiency. Next up came the antibiotics. No methotrexate while on antibiotics, back on prednisone. It appeared to be working, but the abscess was like my breast abscesses. Unwilling to surrender. It came back. I talked to Dr. Macalester. He and Dr. Tom worried about it following the same trajectory as my breast abscesses. Granuloma? He got me in to see a gynecologist to make sure it was an abscess and not a cyst, a fine feat, as I could not seem to get an appointment myself. Abscess confirmed. I finished one antibiotic and started the next. I started throwing up and then I was on the toilet throwing up in the bathtub. I did not want to go to the E.R. I felt like maybe I ought to go to the E.R. I went to Dr. Tom’s office instead. He wasn’t there, but his brother kindly saw me. I regret to say I made his acquaintance by hurling into a small pink garbage bag. I stopped the antibiotic. I continued the prednisone. We’re almost caught up now. I got an ultrasound to see if the pain in my breast is abscesses or scar tissue or what? Dr. Tom looked at the ultrasound and thought it looked like scar tissue and inflammation. But the abscesses are cleared up for the moment! So that is something. For all of methotrexate’s side effects, I have to admit that is impressive. I have round rashes. Are they granulomas? What was that? You don’t know. If I got a mastectomy, would the resulting scarring leave me in the same place of having continuing pain? You don’t know. I was allergic to the last anesthesia used in surgery, is there a way to know if I can have surgery in a safe way? You don’t know. When my mom has surgery, her veins rupture. Is this likely with me or is there something I can do to minimize this risk given our genetic history? You don’t know. I don’t know either. It is like histories, we’re always having to take up the torch and try something. We only know when we look back, I guess, and by then things have obscured. We make our best guesses based on risk and reward. I want to be medically conservative until conservative is unlivable. Aggressive has other consequences. I should do surgery to cut out the abscess, the specialist says of my labia. If it were going to heal on its own, it would have. Be bold! I have the history of my breast. It took months. I am the specialist of myself. “I’m going to talk to Dr. Macalester. Thank you.” I say. It is important to say thank you. I still prefer ‘I don’t know’ to a certain lie. And so, I wait.
As a novice singer, I lay on the floor of my world-traveled opera coach’s house and learned the humble art of breathing. She was everything I wanted to be. The power of her voice brought tears to my eyes- eyes that prided themselves on cynicism. She was larger than life. Firm yet kind, definitely not a push over. A leading lady diva that laughed and drank tea and assured me I had it. I was far less sure I had it, that ethereal substance that I saw in her. The thing that makes one want to be with someone, listen to even the hum of their drawn breath, be a part of their stories… the thing that brings a young woman back week after week to breathe on a floor while getting admonished that it isn’t quite there yet. I learned to be myself from her, that mind and body are firmly connected. It seems obvious, but until I spent a year learning to breathe, to lift my soft palate, to notice small increments in my posture that effect the voice- well. It was all theory, and not the physical thing it came to be. I was elated when I began braiding all the elements- breath, language, core strength. When I powdered my face blue and sang an aria of death and had the most powerful voice in the recital- forgive my moment of pride. Kristina- my vocal coach- and I grasped each other backstage and squealed like little girls. The acoustics! The high note! Oh, I’m sure there were areas I could have improved on. But I sang an aria in Italian and it was fabulous, dah-ling. We talked about plans for auditions.
The author as a young aspiring opera singer
This is to say, I know how to be in my body very, very well. I trained for ten years to be in my body. To hold my head just so. To fill my lungs with breath and then manipulate it into pathos. It is why I am confident in my choice to dissociate from my body. I don’t need to be with it twenty four hours a day. I have rather more important things to do than suffer, thank you very much. I’ve had people exclaim in horror at my choice. They think I ought to seek therapy to ground myself. I can come down anytime. I say that with the cheekiness of an addict, I think, I’m addicted to day dreaming. I do find it a bit odd that dissociation from chronic pain is frowned on. You can’t have pain medication, but you can’t dissociate either? What can you do? Be miserable while you mouth platitudes about gratitude? It makes no sense to me. I see it as another tool, the way learning how to sing classically is a tool one can use to be a better pop singer. I dislocated my shoulder the other day. It is okay (not really, but since there isn’t anything to be done about it, we best just accept our lot). I tuned it out, figuring it would go back in when it was ready, since it wouldn’t with the usual flopping I do. I got a searing headache for a few days, completely forgetting about the shoulder. I didn’t need to remember the shoulder pain. It was fine that I dissociated from it. Great, in fact, since I didn’t use alcohol or narcotics, or anything. After a few days, I remembered the shoulder and took my muscle relaxers. It went back in, the headache went away, and I’m back to semi normal. I should point out the muscle relaxers would not have made it go back in the first night, I’ve tried that. It takes time. For me, maybe someone else would have better luck- the point is, it didn’t hurt anyone that I checked out so I don’t understand the tizzy people get into. In fact, I do some of my best work when I dissociate. I was standing there, dissociating, and I was asked what I was doing. “Watching a movie in my head of my next book. I have to watch it all or I’ll lose it.” Seriously, that is how I’ve written books and music. Maybe it’s a different part of my brain or something like that, I don’t know. But it’s kind of neat when it happens. I appreciate it, my ability to turn off the emotions. How do I come back? Like all good things, the movie comes to an end. I use my training. I do vocal exercises, I think of the colour of a tone. I feel the burning in my lungs as I hold a note, the way I stand, all I learned. I think of Kristina, who I love. And then it is easy. Love can let you into a dream and just as easily lead you back out when you’re ready.
It is hard not to notice a girl with bright blue curls and five inch platform boots. That was by design, carefully crafted, an art project, every fabric layer saying I am an artist and if I’m not interesting, at least I’m trying to be. When the circular rashes found their way to my scalp, Iignored them until they turned raw. Until they bled. Until the idea of painting bleach and colour over them made me shudder because the very act of parting my hair to peer at the nightmare of it hurt. I’d always been told one day I’d grow out of my costumes, but I never did. I ghosted out of them, slowly fading into the background, until the day I looked around realizing the only person I’d talked to beside my husband was Dr. Tom. The only place I’d been my house, my world becoming what I could wear with the least amount of rashes. The least amount of pain. I can not think of not trying, until I’m confronted. I’m not sure why it’s generally physical therapists, but I have a theory. Physical therapists are sporty types. They like results. I can’t give them results. I’m not getting better. I’m trying not to get worse. I’d given up on platform boots. I didn’t trust my body to stay upright in them anymore. I’d purchased a pair of orthopedic shoes on the advice of a specialist. I’d put away my tulle skirts and donned the compression clothing to help my dysautonomia. “The shoes will be good for stability, but they’re ugly…. Too bad they’re ugly.” the physical therapist shook their head sadly. They went on to insult the compression clothing, determining it to be ugly as well. Too bad. Yeah. It is too bad. I didn’t choose any of it for aesthetics, so why make idle conversation which causes me to feel like shit? I already felt like shit, being recently diagnosed with incurable diseases and all that. I’ve had a physical therapist recoil when my body dislocated in front of them. They were grossed out, and I felt gross because they avoided touching me. I’ve seen it in the mirror. I know it looks wrong. Yet another physical therapist offered me the helpful opinion that they couldn’t bear to live my life, and then followed up with all the athletic pursuits they’d enjoyed over the weekend. Great. Thanks. I read studies about people with my conditions offing themselves, and I think perhaps, and I could be wrong here, but maybe these attitudes don’t help. There are two choices. I live, with pain and subjectively ugly braces and clothing and mobility aids and sometimes grumpiness and sometimes smears of happiness when I see the sky watercolour in the evening or I listen to yet another medical professional who sympathetically tells me that I am a burden because of my conditions- I listen to them very hard, and I take myself, and my burden and I off myself. Which is ridiculous, because we are all burdens. Every single human being on the planet is a burden. I may have a diagnosis written down, a scope of burden, if you will. But that does not diminish from someone else’s burden. Their need to be loved, to have their clothing washed. To be listened to. To be fed and to have a home. It’s unfair to point to the disabled and say you are the burden, the problem. If I took the burden of my being away from my small family, away from my husband, would he be better? Or would I leave behind pain and confusion? Would I merely shift my burden to someone else? Burden needs reframed. It’s not even hard. I’ve heard the excuse that one needs to experience pain or disability or some great crisis to have empathy but Dr. Tom told me he hasn’t experienced pain like mine. When he told me I was disabled, he pointed out all the amazing things disabled people do. I’m a writer. I know disabled people write, right? Right? He looked right at me, really looked, so I had to see, had to believe him. I have a problem with belief. With trust. But he believed it, so I could too. When I walked into his office with my compression clothes for the first time, he gasped in excitement at my new mobility gear and told me it looked like something a superhero would wear. That it was cool, with all the built in KT tape. When I got silver ring splints for my hands, he admired them. It comes down to something obvious. He wasn’t an asshole. He has a warm, curious personality that comes with laughter and doesn’t mind stuff that grosses out others, I guess. Sometimes that must be an intentional choice. I know it is for me. I am a pessimist. I’m depressed. All the time. I make a choice to try not to be an asshole to people. To try to be empathetic. It doesn’t matter if it comes natural or if it is a choice. The results matter. Kindness matter. Actions are who you are. I’ve seen it on #medtwitter, the frustration of medical professionals treating patients who have chronic illness with no cure. It depresses certain doctors. It makes them feel useless. They want to help, but there is no help. They are wrong. There is help, it’s just not the same help as one can provide someone with a staph infection. It’s kind of cooler though, it’s like using a subtle scalpel. I’ve been asked what Dr. Tom does. He listens, really really listens. Then he acts. Or he doesn’t, if actions would make something worse. That’s where trust comes in. I don’t trust a lot. I trust him. That doesn’t mean I expect him to be right all of the time, or resolve every issue, but I know he tries all of the time. He isn’t giving me a cold glazed eyed stare. Sometimes it is good to be able to tell someone, and that’s it. That’s the doctoring. I told him last week I can’t feel when I burn my hands. He can’t fix my nerves. I don’t expect him to. But he can write it down, and by doing that I am curbing my natural self destructive urges. I am now accountable to someone. If I show up burned, I went too far. I wasn’t watching my skin turn red. He’ll know that. The burden of being will be observed by someone else, laughed over, discarded, treated, and I won’t take those words as seriously. I’ve seen doctors on #medtwitter ask what difference diagnosis does without a cure. My god. Are you serious. Knowledge. That’s the first. Before Dr. Tom, I was told over and over again that I was simply mentally ill. Nineteen years of that. Braces, physical therapy, diet, medication, disability, the ability to check yes to research my cells on labs… So that maybe one day for someone else, with kindness and science, there is a cure. Did I mention knowledge? Even if it is incomplete, it’s better than nothing. The burden of knowing is lighter than the burden of doubts and fear. Burden is a loaded word, weaponized. We can just not use it at any time. We can instead say “Wow! You look like a superhero!” or, explain how a medication works like my rheumatologist Dr. Macalester, and then say, “I feel optimistic; I’m not going anywhere.”
I don’t believe disease is a reflection of morality, which is what I said when my mother said sin explains why I’m sick. It isn’t sin. It didn’t show up in the pathology reports. These conversations leave me feeling sad and strange. I prefer my doctor, even when he says he doesn’t know.
Maybe especially then, because there is a flawed humanity to it, despite all his years of practice, his years of medical school. His research. He doesn’t know, and is humble and human enough to say he doesn’t. He hasn’t spread his hands to reveal a demon, directed at my cerebellum, pressing on my brain, squeezing the liquid down, down, down that spinal cord… It’s a mystery, a maybe some other time. It’s not supernatural. It’s blood and bone and tissue and meat gone wrong, just who knows how. My grandmother was convinced she must have done something to cause her suffering, like Job. Like God and Satan were looking down, casting bets. There was a lot of magical thinking growing up, woven through every calamity. One must bear the unbearable in a suitable manner or else an angel would record your doubts to be used against you later. I recall another family in the church I went to refused chemotherapy for their child with cancer. They opted for prayer, and every so often I think of that child and the grave they surely found themselves in. What sins would that child have committed to earn cancer? There is always a sneaky answer. It is the sins of the father. Some generation back, who knows how far, a solemn voice telling me perhaps even to Eve, a sin was committed that caused me to deteriorate. I should pray about it, but I’ve grown older, harder to control, force to my knees. They ache. I stand, limp, defiantly. I take a muscle relaxer instead. I was encouraged to catalog my wrongs as a child. Be sure your sins will find you out. I had anxiety attacks about them. Full on, around campfires, while being told the whole world was about to end, and I was to be tortured. If I failed while being tortured I would go to Hell forever. I couldn’t breathe thinking about the horrible likelihood of getting into Heaven. It was said that only 144,000 righteous would go. Who did I think I was, that I would get in? I was a nobody, already imaginative, and imaginations are on par with lying and lying is a sin, and sin causes sickness and- I banged my head against the wall over and over again as a child. That weight balanced on top of the weight of illness cracks the mind at night. Don’t ask me how. It’s easy to be rational in the day. Harder when you realize the irrational thoughts are direct quotes from a parent that must be scrubbed out. But, like I said- Disease and disability are not a moral failing. It’s just life. Until it’s death. And I don’t believe in all that other junk.
The Conservative Method Granulomatous Mastitis, I
“Have you thought about mastectomy?” “Yes,” I said. I have. For years, I said if I ever got cancer I would cut them off gladly. Easily. No questions asked. Like a real jerk, I said that. Like someone who has no concept what it’s like to have a doctor ask seriously if you’ve considered cutting a pound of your flesh off. Back then, I thought cancer was the only reason I might be in a position to lose my breasts. I’m amazed at the great many things I’ve been ignorant about. Now I know things I wish I didn’t, except ignorance won’t save me. Knowing won’t either, but it’s always what I prefer, even if it sucks. “I think about it all the time. I’m tired. It hurts. I’m ready for it to be over; I fantasize about it. But I’ve read studies, and it doesn’t always end well. I talked about it with Dr. Tom. He said he didn’t know how my body would do. I don’t heal well. I know he’s right.” I said kind of hating that I know Dr. Tom is right. Hating that I was rambling. I’ve had friends who had breast implants- not the same as getting reconstruction, but impressive results none the less. I admired their beauty, and if I thought that was achievable I might be a little more excited. What a vain thing to admit! But why not throw in vanity to the mix? It turns out I care about my appearance more than I’d previously thought. “That’s true. Surgery doesn’t always work.” My rheumatologist said. “We’ll keep trying the medication.” I agreed, but it took a lot to take the conservative option. Agreeing to continue to take medication that makes me fatigued, shreds the skin in my mouth, leaves me with balls of hair in my hands, and downing stomach medication to calm the pain… Agreeing to meet my rheumatologist next week to learn how to self-inject this stuff. He explained the size of the needle, how to fill the syringe, where I’ll be injecting… I ask if I can screw it up. People love giving you the impression that you can screw up with dire results. “No.” he assures me. He has a kind voice. He always asks if I have more questions, and I guess I’ll try to believe him and jab that needle right in. I never thought about giving myself a shot before, and I feel like a coward now for being shy of a needle. It’s like anything else one isn’t used to I suppose, hopefully in a few months I’ll think it’s not a big deal. That’s what I do. I tell myself over and over and over that nothing and none of this especially is a Big Deal. And then I slip and cut myself accidentally. It isn’t a large cut. It’s small, but it bleeds. I stare at it, and then notice how it stings. It’s suddenly overwhelming, that sting. I weep. It’s a series of small indignities that stack into a tower of Too Much. I used to go to the library and now I don’t have that. I walk from one couch to the other. I drink a coffee, I drink a tea. I wonder which part of me will revolt next. I wonder. The breast surgeon’s office calls for a follow up. I know I’m supposed to go in for an exam and see if I need new images. But we’re in the midst of a pandemic. I’ve been quarantined for months. I’ve been on steroids this whole time, and the idea of being exposed to so many other people adds a layer of anxiety to the experience. I’ve been putting it off. I won’t be able to do that any longer. I hope I won’t become infected. Hope is an emotion I’m annoyed with. It isn’t firm ground. It’s ethereal. Who has time for ethereal things when time has become a long stretch of waiting for abscesses to burst? Or tunnel? Or become so deeply webbed through my tissue that it’s lop the whole thing off or take this medication and retch? I still laugh, and squint into the sunshine. I try to really look at the green of the leaves, remember it. In case my eyes go. I want that colour deep in my brain. I try to focus on everything else, yes. I have thought about mastectomy.
“Did you fill it out at least kind of honestly?” Dr. Tom asked, laughing. He flipped through the paperwork. I’ve had terrible results with telling the truth, but I am a bad liar. My face sells me out. It flushes red, and my pale pale skin is quite the canvas… My heart beat skitters. Lies are lost to me, but saying nothing? Blank spaces are safe. Previously, I’d stopped filling out the depression forms in doctor’s offices. I hated that they came up later in ways I couldn’t predict. Usually as a way to write off some weird physical symptom I was having as anxiety. I hated that it didn’t seem to matter anyways… I’d been informed by therapists that I needed someone who specialized in cults or religious trauma or something that basically meant I’d either be priced out or never find them. Not that I wanted a therapist. My therapy begins and ends with blaring Alice in Chains, for whatever that’s worth. I welcome being down in a hole. I put up my hood, I brood as I drink the blackest coffee staring at an equally brooding Pacific Northwest sky. Gray. Everything gray. But Dr. Tom isn’t those other doctors, and somehow blank spaces felt a bit like lying. So I filled them in. Do I feel hopeless? That is a hilarious question. I’ve read the research. My condition is progressive. There is no cure. I’ve felt it progress. Fuck, yes, I feel hopeless! It is hopeless! Not to the death, I hope, I mean… Everyone dies, but… Jesus. Yes. This is hopeless. What a question. For good measure, I’ve put on the record Dirt while I write this. Just to help me through it, therapeutically. Hope is a weird thing. Because I also feel hopeful. Despite the increasing pain and diagnoses that stack on each other like an unwieldy pile of pick up sticks, at least I’m not alone. I have validation. I know I’m not completely insane. A touch insane, maybe. Not totally. Just the right amount to laugh at the absurdity of it all. Laugh instead of cry, which is a good thing, because once you start to cry you have to fill in the next question with… Are people around you worried or some such? I think more it’s that I get grumpy when my pain levels soar. I get grumpy when I’m touched, and people are made to touch. So they reach; it isn’t their fault. It’s a human need. But even a little brush can send this awful searing pain through me and I lash out. I try not to, but even if I manage not to say anything… it’s in my eyes. That what the fuck look, and it isn’t great. I need to work on absorbing the pain because it’s either that or absorbing the ruination of relationships. How do you do that? I used to drink whiskey. That question is now no alcohol because of my meds. But before, I could numb it a bit with the whiskey. Hide the eyes. Now it’s nothing. Sober and stretched looking at a long life of pain and hope and hopelessness twined together chronically. There isn’t anything to do about it. Not that I can think of. I’m depressed, but emotions don’t matter. Their weight depends on the value I give them. And mostly I value nothing. Everything is transient. Everything is what it is, and I’m… drifting. That’s the problem with me. I think too much. I’ve been warned. That will be the death of me, not any of these other things. I try to pin tuck my deepest miseries into me, sewing the fabric closed as tight as possible. I cover my tracks with laughter, laughter and long sleeves. I learned the art of embroidery from my grandmother as a child. She was an incredible artist. Tiny, perfect stitches in a rainbow arching over blankets and pillows and sundry other items. My own stitches were never as perfect. They meandered like my thoughts, despite her best attempts at making me learn discipline. Despite the many times she ripped my seams out and made me start again. She was not an easy woman to love, but I did love her. Love is an odd action, skipping around the hurts like bad stitches. I seized on her floor, and she let me. She didn’t call an ambulance. She scoffed and said I did it for attention. I was trying to tear the family apart with my theatrics. I was crazy. Crazy. Crazy. Crazy. That was a word that beat like a pulse in me, next to the love. Next to everything else. It became a wound I held to me like an animal in the woods, not letting anyone near. Shame at what I couldn’t hide consumed me. The needle I used to stitch darling little puppies traced lines into my soft skin easily. Punishing me for all the parts I failed to hide. The mistakes. The seizures… not that I knew they were seizures, then, but- I wanted it all to end. I found the cuts stopped the emotion. The emotion was something I loathed. Not a mere dislike. A seething hatred for my weakness. For all the parts of my life that I lacked control, which were all the parts because I controlled nothing. Maybe it stemmed from an earlier time. I was told that as a little girl, I’d bang my head into the wall. Then I’d laugh. What is that? I’d turn off the voices of hatred with the needle and then I’d be ready to laugh again. I moved out of my parent’s home as a teenager and as one might imagine, young adults aren’t that wise. I lived with roommates who couldn’t fathom my slips from consciousness, who didn’t want to fathom them because they wanted to do more shots. I wanted to do shots. I wanted to be normal. But I wasn’t, and no amount of alcohol made me normal. I think my lack of partying led to a resentment that resulted in thoughtless accusations. Again, it was my craziness that was the problem. This is the evolution of my general distrust of people. People don’t like to be bothered. I can’t tell you the many times I’ve heard the saying “good vibes only” and wanted to shake someone, because good vibes only absolves responsibility. To love and be loved means accepting bad vibes along with the good. Learning from them, peeling back sleeves. Bandaging. It was from my vocal coach that I learned to love myself. To find myself interesting. To realize the adage “you have to love yourself before you can love someone else” is another complete crock of shit. She loved me before I loved me, fiercely. She said it, looking right in my eyes, and somehow I believed her. She isn’t a liar, so that helps. I loved her, and then eventually… I loved me. Eventually she laughed at the word crazy and I laughed at it too. Eventually I married a man who was with me in a hospital with his brand new nonfiction book on my cot when I had a seizure. I urinated all over it. He wasn’t angry at me for ruining it. He didn’t call me crazy when I woke up. He just bought another copy of the book. Stitches change in time; the thread can fray. Scars fade white. Words can change their meaning; I read dictionaries to prove it to myself. I found out after my grandmother died that she’d been on antidepressants and anxiety medication. It was sad. It was funny. All the times she tried to convince me I was crazy she was convincing herself it didn’t come from her. It did. I understand the fear, and fear makes people angry. They don’t want to fall apart. They don’t want to be weak, and my grandma always wanted to be strong. Everyone who knew her says she was a tough old broad. She was. But she was a coward too. She refused to dial 911 and know the truth. She had headaches too… We’re all hopeful and hopeless. We’re all terminal too. Do I ruminate often? I drink too much tea now. I think about death. I know how to sew by hand beautiful things, even if these days I mostly can’t. I listen to Alice in Chains, and I get angry when I read studies about my conditions that claim I must have therapy to cope. Anger is a coping skill. It rises one up in the morning. It can carry one through until exhaustion sets in. I don’t need someone trying to take that away. I like it. “Yes. I filled it out kind of honestly,” I said. Then I told Dr. Tom what I meant.
It gets better is a great slogan for battling depression unless you know it doesn’t. Sometimes it gets much, much worse. That’s the trouble with reading studies that gather data about suicide and pain, or more precisely, suicide and Ehlers-Danlos syndromes. They don’t include an appendix; an okay-but-now-what section. They just have dismal facts about my future should I choose to become one of those statistics. Part of it isn’t up to me. I will get progressively worse pain and symptoms. The suicide part is up to me. Four in the morning is a good time to think about suicide. Muscles spasm, weird electric strings sing along my spine branching out from my pelvis shooting down until they find the end of my right foot where they double back for more. More until I wonder how much time has passed. I’ll reach for my phone. Distraction. It’s been three minutes. What. The. Hell. I try all the tricks. CBD. LDN. Heat. One pillow, two. A mountain of blankets. It doesn’t matter. Once the electrical storm hits, it is waves to be endured. How to dull it? More experience. Thoughts. More electricity. Brain activity. I think about thoughts being formed. Where they go. Most of the time it isn’t that profound. It’s blurry. Underneath. I feel like I’m on drugs somehow. But I’m not. I’m on me. On pain. So I try to feel the feeling. What is happening exactly? Puzzle it out, so I can describe it later. As if that will help. I know what we google in my doctor’s office on Pubmed doesn’t come close to describing… It’s all in numbers and statistics, and they don’t have it handled. It says some fucked up shit if you read those studies. So sometimes, maybe, don’t. You can swim in anxiety of becoming that number instead of the electrical storm. But that is a number that isn’t fixed. It isn’t even accurate as EDS is not diagnosed as it should be. I can swim in the waves. I tell myself that. But three minutes becomes four minutes and I start thinking if it’s bad now, how is it going to be in five years, ten years? Twenty? What will become of me? I think about the years stretching on and on and how it is definitely going to get worse, and yes. I think about suicide. I said I would tell my doctor if I was serious about it. I’m not serious now. I’m a flirt. I think about it as another distraction to numb out the fire of nerves lighting up. I think about it as a reward, like I could just stop it. But I won’t. Morning comes, and I roll out of my suffering. Test each limb to see if it subluxed and if it did, I writhe around to knock it back in. I put on my braces, especially my thumb braces so I can drink my coffee. Another distraction. Some days are all distraction. Some days aren’t so bad. I think about all the stuff we don’t know yet as a medical team. We’re in the gray realm of possibility. There is hope in possibility, as long as there is breath. If there is no breath, it’s over. That hope is snuffed out. So I try to live in possibility. That gray scale, like the gray sky out my window. Like the gray brain fog that descends on a bad day where I can’t write, can’t do anything at all. I don’t think it is depression, exactly, to know it gets worse. To know it deep in your bones. To feel it as another part goes wrong. Once it goes wrong it never goes right again. It’s another adjustment. The studies don’t say what to do with that information. I see medical professionals on twitter talking about how chronic illness makes people suicidal but then… nothing about what comes next. Here’s what Dr. Tom said. Just don’t. I like it. Simple. To the point. We laughed. Gallows humor always works on me. Just don’t do that. Instead. I think about it like waves. They come up, they go down. I learn to adjust to each new pain level. I learn to adjust to my limits. I learn my new body. I learn to laugh at things that are horrible, because if I don’t laugh- If I don’t laugh I can’t do this, and I have to do this because it is my life, and I only have one. I’m an artist, for what that’s worth, so I shape my pain into books. Into song, into paintings. I shape it into places more comfortable to look at than the mess of my body. I deal with it externally. Keep going because the other option is not existing, and that is coming soon enough as it is.
I have an uncomfortable relationship with pain. I laugh hysterically; it runs in the family. I remember my mom stubbornly bleeding from wounds that ought to have gotten stitches laughing and laughing, rolling on the floor. She accepted butterfly bandages finally, tears streaming down her face from laughing so hard. And then later, not that long after that, I got cut too. A nasty gash across my finger gushing blood even as I pressed toilet paper onto it. I remember staring at it, stupid vertigo bringing me down. I still have the white scar. I laughed. I laughed and laughed as I refused to go to a doctor, afraid of doctors. Afraid of stitches and afraid of sterile rooms I didn’t understand- afraid of the bill I couldn’t pay for at the time too. I do slightly better now. Slightly. I still laugh. But I like to think if I was bleeding out, I’d at least go. I disconnected from my body, from the pain that wormed in. It was easy to do. I consumed myself in other pursuits. There are parts of my body that don’t seem to feel very well, and if I thought about it, I’d get scared. I’d not feel something on my right leg… the numbness crept. Or my hands. My face will go numb. It’s easier to distract myself in research. I read the Oxford English dictionary. I read books by Henry Miller, Oliver Sacks, Paul Broks, Carl Sagan, all the poets and philosophers and intriguing biographies and what nots. I read a hundred pounds of romance novels of all sub genres. If I thought about other people’s thoughts I could try to not think about what I was not feeling. Or sometimes what I was feeling. The pain. The endless pain. I never was a good sleeper. As a teenager, I was already living on my own, working crappy jobs, drinking Red Rose tea and writing bad poetry. I had a friend who’d come over to my rented room and we’d listen to Leonard Cohen while I wrote feverishly with my dark circled eyes, and we’d have a good time of it. Two in the morning? I was up. I tried different sleep patterns over the years. I read about the Dymaxion cycle, which of course I tried. I’d set a timer to take four thirty minute naps every six hours. I was insufferable in my pursuit to fix myself. It didn’t help. Nothing helped. I tried to fix the depression, because that’s what I was told must be fixed. Until one day I thought it doesn’t. It just is. It’s a bit depressing to hurt, and be numb, and that’s that. I’m okay with it. I felt better about the whole deal after that. I gave up on sleep methods too. But not on libraries. I kept that. I don’t know how to find myself on the pain scale. Its smiley face nonsense mocks the situations I can’t explain, the electricity buzzes. The dripping liquid sensations, the deep dark cold that I sometimes can’t escape. The throbbing that seems to be a whack a mole endeavor, and anyways, I am in the process of disconnecting. Disconnecting and numbness is its own subsect of pain. It pushes against the compression clothing I wear, licking the edges of it trying out the boundaries. Where does that figure? When I was homeschooled, my mom would grade me in a way I hated at the time because I prided myself in my academic abilities. I never thought I was the pretty girl, so I wanted desperately to be the smart one. Anyhow, she always docked me a couple points, even when I was right. Because who would believe I got a perfect score every time? That’s the way I am with the pain scale now. I’m beginning to understand her logic. Whenever I’m presented it, I never know how to say I hurt the most. I hurt so much. I hurt so much it’s getting in the way. I can’t smile in life, and it bothers other people, and I don’t mean to be a negative void sucking the life out of the room as I grimace holding my hip as it slips out again… I just fill in the 6. Somewhere believable. In the middle, because I’m still laughing. Those little faces don’t look right with my experience, and how do you make it align? I loathe that scale. Loathe it. When I was at the physical therapist to get my shoulder brace, she kept telling me to let my shoulder go relaxed in her grip so she could test its motion. Finally I told her I’m like a wounded animal, I suppose. Guarded. It’s hard for me to let go. I’m sorry. I did try. I don’t know how to relax in someone’s hands. I don’t know. I don’t trust. But there’s a reason. People have hurt me without meaning to. I’m fragile. I don’t blame them. It’s not their fault I’m made of flimsy materials. I talk too fast. I try to pass things off, like please, let’s not get back into the realm of such things as anxiety. But I kid myself. It all winds through, especially if I can’t sleep. If the weeks have stretched to months in a bad go of it with migraines or some other ruckus. I dial down every emotion, and become quiet. I learned this, it works for me. I smile, and I go through the motions of pleasantries for others. I try to anyways. I sit at the piano. I press the F note, and fill my lungs. I hum until I run out of breath, and keep humming until it burns. Until the fire leads up from my belly to my throat, to my face. Till I can feel it. Because I chose that pain. That small vocal exercise. It’s not a true pain. It’s just a little meditation I was taught by a yogi master, despite my absolute lack of spirituality. I take what I can get. I got that. I have a wound. A pulsing wound that cuts through my disconnection, which hums through the silence and chatter of my internal dialogue, past my memorized canon of literature. I have a wound. I have a doctor I trust not to hurt me. I sit in his room. Dr. Tom looks at me. I look at him. Oh, man. I laugh. “Does it hurt?” he asks. No scale. No qualifications. “Yes.” I say. “Yes, it hurts.” “You have a hole in your chest,” he observes. “It looks like it hurts!” The weight is gone from the fear of a pain scale I can’t fathom. He sees it, and he sees me. I don’t need to explain.
How Do You Save 10,000 Nepalese children?
(photo author’s own. Anais Chartschenko, Stuart Perrin, Kristina Jones)
I listened in rapt attention as he described in heart breaking detail the conditions in which he had found children. They lived in cages and were sold to traffickers for small sums of money by their parents. His eyes got teary, and so did mine. I was lucky enough to attend one of the many speaking engagements Stuart Perrin is appearing at to support his novel, “Little Sisters”. It’s a page-turner thriller of a book, with scenes from posh New York City to the hinterlands of Nepal, and the brothels of Mumbai. Three sisters are trafficked by their family with three very different results. Months after I read the book and saw Stuart speak, I was still thinking of the children and his dedication to saving them. How did this man set out on a path that ultimately saved the lives of approximately 10,000 Nepalese children? I decided to ask him. How did you initially become aware of child sex trafficking? Before 1992, I knew nothing about the horrors of sex trafficking. I had been to India at least ten times; I’d driven past Falkland Road in Bombay (where the brothels are), but I only thought to myself it was another oddity of Indian culture; and never asked myself the question: how did these girls get to the brothels? I had been opening meditation centers across the world at the time and I supported myself by running an art gallery in Manhattan. Several of my students asked me to start a center in Kathmandu, Nepal. What a great idea, I thought. So much of my life and spiritual education came from Asia. It would be a wonderful opportunity to give something back. A few months later, my colleague and meditation student, Kristina Jones moved to Kathmandu to open a center. Not long after she arrived, she telephoned me in New York to say that she loved Kathmandu and found it wonderfully exotic, but had no idea how to spend her time when she wasn’t teaching. I promised her that something would come up; after all she was in one of the poorest countries in the world. Two days later she called me back. She had gone to a UNWO (United Nations Women’s Organization) meeting in Kathmandu about sex trafficking. She had met a Nepalese doctor, Aruna Uprety, who told her of children being abducted and trafficked into sexual slavery. Girls between the ages of ten and fourteen years were bought by sex traffickers in the hinterlands of Nepal and sold to brothels on Falkland Road in Mumbai, India. These children were tortured and raped and forced to have sex with twenty men a day. They remained in the brothels until they became so AIDS- ridden that they were discarded like used tissues. I said to Kristina, “This is our work. We have to help these children!” What did you do to help in Nepal? From 1992-1994, as President of the Bahini Foundation, I oversaw much of its operations. I stayed in close touch with Kris Jones whether I was traveling or in New York City. I tried to raise awareness in the United States about the horrific child trafficking situation in Nepal and India. I made a number of trips to Kathmandu and worked with Kris and the children in the safe house. To my dismay, at the time, the world was deaf and dumb. No one really cared. Most people just looked at me in disbelief that something like this was going on. Meanwhile over 200,000 Nepalese children were living in bondage, and at least 10,000 a year were being trafficked to Indian brothels. Working with Dr. Aruna Uprety and RHEST, we first identified kids through offering free medical camps in remote villages and took referrals by police or teachers of families who were known to have trafficked their kids. We tried to convince their parents to put them in the RHEST safe house instead of selling them to traffickers. That was (and still is) challenging, because the poverty is so devastating. The average income for people living in the hinterlands of Nepal at that time was about $15 to $20 a year. Traffickers paid as little as $50 (the average wage of a teacher or policeman at that time) for a girl- and more if she was a virgin. The family was told that she would go to Bombay, Calcutta, or Delhi to “work.” No one in the village knew what the work would be, but they believed that the girl would be able to send money home. In addition, the family would no longer have to worry about having to raise a dowry for the girl. We weren’t always successful, but the girls we were able to save were enrolled in local schools where they would be safe. We also welcomed women with children who had escaped from brothels in Mumbai. We had to remain vigilant to keep the girls from the clutches of sex traffickers even after we brought them to RHEST’s safe house. On one occasion, Kris pretended to be a medical professional and went into the Falkland Road brothels to document the appalling conditions the girls lived in. Had the brothel owners known what Kristina was really up to, most likely they would have killed her. In 1996, Kristina became ill. The pollution in Kathmandu was so bad she had begun to develop lung issues. I asked her to return to the United States for treatment. Dr. Aruna Uprety who ran RHEST (Rural Health and Educational Trust of Nepal) incorporated Bahini under the auspices of RHEST. Bahini was the first organization of its kind started in Nepal. About a year and a half ago, Aruna telephoned Kristina and I, and told us, that because we started the Bahini Foundation it saved the lives of about 10,000 Nepalese children. What was your inspiration for “Little Sisters”, the novel? The Bahini Foundation produced a three-minute promotional video, "My Name Is Gita” to raise money, which is still being shown on VTV in Hong Kong as a public service announcement. Kristina is an accomplished singer, and she sang a song in the video about a girl named Gita. After seeing the video, I knew the story needed to be told in a big way. The very idea that 200,000 children were being raped, tortured and forced to live in sexual slavery, and almost nothing was being done about it, made me sit down and write “Little Sisters.” The world had to know that this was going on. At first, I wanted to make a Hollywood film. I wrote a script, but no movie studio would touch it. “It’s too dark,” they said. I even considered making a documentary, but decided that was too dangerous. No brothel would allow us to film what really goes on. If we tried to do that, we’d probably get killed. I wrote “Little Sisters” as a novel because fiction was the only way I could render the truth and make it palatable for people to read. “Little Sisters” is a multicultural family story and a love story. The underlying dramatic theme is the horror of children being sold into sexual slavery. It shows how these children are transformed from innocent kids into sex slaves.
What are you currently doing as an activist? My book, “Little Sisters” has been instrumental in setting up anti-human trafficking events in many cities throughout the United States. The whole point is to create awareness- to make people realize that this isn’t just a Nepalese and Indian problem. This is going on in just about every city in the United States. There are over 200,000 children being trafficked today in America and it’s a 32 billion dollar international business. I’ve done panels with members of the FBI, with police detectives that work in anti-human trafficking squads, and with heads of NGO’s working in the field at NYU and The Ethical Culture Society of New York City. I was recently given the pulpit to speak about anti-human trafficking at the Atkinson Memorial Church in Oregon, City, OR. There are two events coming up in Carmel, CA and one in Monterey, CA the last week of January. I‘ve been given the pulpit to speak about anti-human trafficking at the West Hills Universalist Unitarian Church in Portland. I will also be speaking to the Lion’s Club in Eugene, OR. Both of these events are the third week of February. In March I have two panel events in at Westchester County, NY public libraries. There will be a member of the FBI on one, a chief of Police, executives from NGO’s and someone from the D.A.’s office. In early April there will be a similar event at another Westchester County public library. Sometime, around the third week of April, there will be an all-day anti-human trafficking event at the First Universalist Unitarian Church in downtown Portland, OR. Besides Kristina and myself, the list of tentative speakers may include members of the U. S. Congress. How does the situation in Portland, OR and the USA compare with Asia? According to the Portland Police, the situation in Portland is very similar to what I speak about in my book “Little Sisters.” In my book they are called traffickers and Gharwalli’s (Madams). In Portland they are called pimps. Children in Portland are kidnapped, seduced, bought, and stolen off the streets. They are raped, tortured, brainwashed and forced to sleep with twenty men a day. The situation in the United States is just as horrific as the situation I speak about in “Little Sisters.” Two hundred thousand girls are presently living as sex slaves in this country.
How can people contribute to this important work? By becoming aware that sexual slavery is one of the most heinous crimes on earth today (a crime that’s equal to the holocaust); by letting their congressmen know about this crime and demanding that something get done; by volunteering time and money to authentic agencies that are working diligently to end this problem; by attending events, reading books, and educating themselves in regard to human trafficking; by being outraged; by saying to themselves that children are the future of our world and they can’t be living out their childhood as sexual slaves; by recognizing that slavery is a larger industry today than it was in 1840, etc. etc. Men also need to be encouraged to get involved. They make up the largest percentage of customers in the sex trafficking marketplace. This is not just a women’s issue. This is a human issue. By bringing men and women together to protect our children, we create a stronger future for everyone living on this planet. Anais Chartschenko is a contributing author of Love Magick Anthology. She blogs at www.anaischartschenko.com Stuart Perrin, an American spiritual master of Kundalini Yoga, is the author of many books including The Mystical Ferryboat, Leah, A Deeper Surrender: Notes on a Spiritual Life, Moving On: Finding Happiness in a Changed World, and Little Sisters. He writes at: http://www.stuartperrin.com/
I walked into the youth chapel at the church. Something was different: there was a box of donuts on a folding table in the center of the room. All of us descended on it eagerly. There were some kids who had such strict parents that they did not get to eat sugar. They were the most deflated. I stared into the box, taking in donut after donut- glazed, creme filled, maple bar- all varieties with one common theme. A big bite had been taken from each one. Dejected, we slumped in our chairs. No one was willing to risk eating a communal donut. We had all been warned about the dangers of sharing food a million times over. We did not want herpes from a donut, no sir. We were adept at going with out. We had already gone without dancing (the prom), learning science, eating meat, reading novels, watching movies, or any of the long list of things that were not allowed. The youth pastor finally entered the room like a Vegas magician, so proud of his show. I could tell he was really revving up for this one. He looked around the room, then focused his eyes on me. “Once you are touched, no one will want you. No one will marry you. No one wants to eat a donut that someone else already took a bite from. They throw it away.”
The other kids looked at me curiously. If they did not know, now they did. I was the donut. I was touched, I was impure, and he knew it. I was raped by someone the guy knew, and here he was telling me God thought I was a disposable tissue now in front of everyone. He went on and on about the virtues of virginity while I had that sensation of being swallowed by the floor.
His words began to melt together. I got up, and left the chapel. I did not return. I think that was the last time I went to the church. I grew up. I met people who did not think that being a virgin was a prerequisite for being a good person. I told myself a million times that the metaphor was boring and stupid, but still, at night I would dream of it. I would feel unworthy. I would remember what he said in painful detail, and how he looked right at me in a room of teenagers to say it. It felt staged just to point out to the holy kids that I was not. It speaks to the education on abstinence. If someone loses their hymen, we need to believe they still are worthy. Virginity as a commodity is foolish, and makes vulnerable people more so out of the shame society levels on them. Who wants to raise their hand in the chapel to say they are the donut? Originally appeared on Leaving Fundamentalism
My meaningless diploma
Every time I apply for a job I have a pang of fear. Some jobs want to check your references. I am not afraid because I have a criminal history. I am afraid because my whole high school experience was a fraud. You see, I was home schooled. At first, I had big, thick text books with spines that smelled nice. I didn’t mind this as much, even though I was mostly left to my own devices to do my school work. I wanted to be smart. Discipline was not an issue. I wanted to go to college. I now see my naivety. I should have paid more attention when church members kindly informed me that college wasn’t for me or that god had other plans… Before long, my mother had switched the whole curriculum up. I now was to do ACE which came in shockingly simplistic booklets, called PACEs. I was told it was much better, and I could work at my own pace. PACEs, get it? So for three years I stared at the PACEs, carefully filling in bubbles with my number two pencil. I can’t explain the boredom. I can’t explain the anger I felt with every depiction of a submissive woman making dinner. The curriculum featured multiple choice questions with only one right answer. There was no critical thinking involved. I particularly hated the comic strips. I was in high school, and there was a cartoon man at the bottom of every page letting me know his thoughts on my obedience! There was always some moral to be found. Every subject was related back to the bible in the most annoying way. image: http://wp.production.patheos.com/blogs/leavingfundamentalism/files/2013/11/screen-shot-2013-11-24-at-15-56-20.png
Notice how the woman is in the kitchen drying the dishes, while the men have been out fixing stuff. In PACEs, women are always illustrated doing traditionally ‘feminine’ activities.My sex education was a picture of a chicken and an egg. I suppose I did not need the chicken picture as I had already learned about the birds and the bees from upstanding members of the community who liked raping young girls. I am sure that the isolating nature of the program helped make me even more vulnerable. I was so lonely. Most of the other homeschoolers I was around were younger than me. It was a much smaller pool to draw friends from than a traditional school. When an adult man decided he was my boyfriend, I was flattered. Even after he started abusing me, I made excuses to myself because I wanted to believe him when he said he loved me. His family was viewed favorably in the church, as was his behavior. This adult man was allowed to be baptized with me in the context of a relationship. I can’t imagine now, as an adult, condoning an illegal relationship. At the time I didn’t see it that way, but that is why there are laws regarding this; it is never okay for an adult man to be in a sexual relationship with a minor. Of course, this is making ACE a spoke on a wheel of issues that surround fundamentalism. image: http://wp.production.patheos.com/blogs/leavingfundamentalism/files/2013/11/screen-shot-2013-11-24-at-16-01-30.png
ACE’s emphasis on modesty contributes to a culture of victim blaming and rape apology.Fundamentalists taught me from a young age to be compliant at every turn. They taught me to fear the outside world. They taught me that men are always superior. They taught me that if something is shameful, shut the fuck up. Suffering is a virtue. I could suffer so much I deserved a cross. I took pride in how much I could take without crying. What else could I do? The adults had chosen this whole life style for me. The point of my homeschooling was to further isolate me from “worldly” things. I think that is true for a lot of homeschooled children. I don’t believe that parents should be able to make this choice for their children. Teachers have to go through years of college to learn how to educate. Why do we allow someone to control a child’s education simply because they could procreate? Every child deserves meaningful education. They deserve science and math. They deserve to learn social skills.
Fundamentalists truly believe it is their duty to teach that only their world view is relevant. Every other world view is wrong and anti-god. The only education that truly matters to them is Bible-related. Everything else is “of men” and not necessary. It is too bad that what is not necessary often includes science, world history, and sex education. My educator took it one step further – anything that disagreed with the brand of fundamentalism I was raised to believe in was blacked out with a marker. I later read about how the Taliban does that. I read about the publics’ outrage and thought, this happens right here. Society allows black markers to be used in limiting an already limited education! It is protected under a proud banner of religious freedom. Should religious freedom involve allowing children to be taught outrageous lies as truth?
Every member of a civilized society deserves the ability to fill out a job application without dread that the education chosen for them will come back to haunt them. They should be able to make an educated decision about whether they want to be cut off from society or not as adults. Exposing children to only one opinion robs them of the ability to learn how to make good decisions as adults. Trying to merge with society when you have been willfully ill prepared is fraught with difficulties. It also seems just plain wrong. When I did graduate, I took the paper my mother had printed to the local college. I tried to get a scholarship with my high marks. I was denied. They would not recognize my diploma as legitimate. I had taken no standardized tests, even the SATS. The years of scribbling feverishly in PACES meant nothing. It felt like god was laughing at me. I was again comforted by members of the church that as a woman, I didn’t need college anyway. Why, soon I would be bouncing a baby on either knee! Of course, no good christian boy my age would want me as I was damaged goods. An older man might be interested…. Of course, older men were always my problem.
There are days when the enormity of my own ignorance staggers me. I mispronounce a word which is caught by my conversation partner and the rest of the day idiot rings in my head. Sometimes I torture myself by reading author bios, skimming to the part where they list their degrees. Recently I was asked on twitter what I majored in college. Nothing. I know college is not the only place people gain knowledge, but when I step back once more it is where did you go to high school? When is your reunion? Nowhere. Nothing. Every once in a while, a young actress or athlete will win an award. The media is ablaze with the fact that they were homeschooled. Memes pop up on my social media about how much better it is to be homeschooled. Just look at what so and so accomplished at age 15! They always leave out the part where the celebrity was educated by actual teachers. All homeschool is not equal. image: http://wp.production.patheos.com/blogs/leavingfundamentalism/files/2017/06/William_Shakespeare_1609-e1497447951348-1024x883.jpg
The Flower portrait of William Shakespeare. Artist Unknown. Public domain.In my experience with the fundamentalist homeschool community, the number one goal was repression of knowledge. My homeschool curriculum, Accelerated Christian Education, was designed for children to work alone, in silence. No teacher required because there is nothing to learn beyond the lessons harped on during the frequent church services. At the time, I worried about being able to get into college because ACE is unaccredited. I was told by church members that god had other plans for me. I didn’t have other plans, though! I had been homeschooled, in church schools and public school by the time high school (with ACE) rolled around. I had a certain amount of pride in my intellect, as only a young person can have. I wasn’t the pretty one, I wasn’t the athletic one, but I was smart. Too bad smart is the worst thing a girl can be in the fundamentalist community. Polite, obedient, modest… those were the words drilled into me. That was what I needed to learn so that I could marry a righteous man and follow his holy guidance. Education suppression is having your religious curriculum censored even further by a big black marker on all the lines that disagree with your parent’s religion. It is a curriculum that is unaccredited. It is being taught lies instead of basic science. It is getting straight A’s in the curriculum and then having your parent alter your grades lower because they worry if someone comes to check up on them-say a social worker- no one will believe that you were capable of straight A’s (even though to my knowledge, a social worker never came to check on our progress). It is a government that allows parents near unchecked control of a child’s education so they can exercise their religious freedom. With the religious freedom, they work hard to make certain their children are unprepared for the world outside. It keeps the church community strong, because it limits options.
I found Shakespeare this month. I had heard the name, of course, and I even watched a movie adaptation of Midsummer Night’s Dream. But I definitely did not read him in high school. I never read him. Whenever he would come up in conversation, I would claim not to like Romeo and Juliet because I heard they die. I had been repeating that bit of tripe since I was a teen trying to hide my own lack of knowledge. I’ve spent time trying to fill in more obvious gaps, like watching The Simpsons. It turns out that without basic shared small talk, it is difficult to develop friendships that can eventually go deeper.
It started with a novel starring Shakespeare and Marlowe (another author I was not familiar with). It was an unabashedly fun adventure book, full of spies and witches and the crafting of Macbeth. But the best part was the footnotes. So many footnotes. I found myself laying the book across my lap googling different things. It was like having an adventure written into an adventure book. I fired up my kindle and downloaded Shakespeare and Marlowe. I plan on reading them both, and then rereading the novel (License to Quill by Jacopo della Quercia) with my new knowledge. In one of the post homeschool groups I am part of, someone asked how long we would be mourning our childhoods. Every day we can find more evidence of what we have lost, and sometimes the gap between where we are and where we want to be seems so large. I think there is no way to make what has already happened right. But we can work one layer at a time, catching ourselves in our cover ups of ignorance. Instead of mourning that ignorance, we can choose to get Shakespeare or a book of forbidden science, or take a deep breath and go on a date. We can choose to be a little more honest with ourselves, and the world. I make mistakes all the time. I try to hold myself accountable, a little more each year, for what I expect of myself. Yes, it is a terrible thing to have adults undermine your curiosity. It is terrible to be told your curiosity is actually a manifestation of sin. But each year that I am an adult, I owe it to myself to strip away layers of ignorance and the shame that I felt went with it. There is wonder in being able to experience something for the first time. Most people lose that as children, I hear. I refuse to lose my wonder. I just read a passage Shakespeare wrote for the first time this month, after all. It was wonderful.
My rapist had listened to me. I had warned him I was thinking of telling on him. I was getting tired of being his rag doll. He explained very gently that no one would believe me, or if they did they would tell me it was my fault. He decided to demonstrate this. He was very sensitive this way.
He brought me to the pastor’s office on the big church campus. There were two men inside the office. The pastor, who I didn’t know, and a blond blind man, who I didn’t know. Then there was a rapist. And then there was me. Three adult men in a locked office, and a minor girl. Me. It’s good to know a room’s dynamics.
My rapist had big blue eyes that he filled with the most convincing tears. He cried about how I was making him sin. I was causing him to stray from the path, and he had raped and sodomized me, and blah blah blah cry whine poor him. I sat there silently. I mean, what a show! What should I say? Adult me wants to reach back in time and say fuck you to all the men in the room, dial 911 to report some rapes, and get child me out of there. But, alas, I had been programmed to be polite. Be nice. And I actually kind of felt sorry for my rapist at the time. I mean, he was crying! He was apologizing, kind of! Not really, but in a way!
After he was done sniveling, and was passed the tissues, all eyes turned to me. The Jezebel. They wanted me to agree to forgive this whole unfortunate event, to pray with all of them. The blind man offered that he used to be angry at god, like he could tell I was, but now he wasn’t! So see? It would be in everyone’s best interest for me to comply. Forgive and forget, and make nice with my rapist.
When I remained silent, they started to wonder if I was touched by the devil. That was why I was so alluring to this poor, helpless man. They wondered if I might need an exorcism. The rapist had seen me shake when raping me once, after all. What was that all about? Must be Satan (Sadly, I have no demonic powers. It’s epilepsy. Damn.)!
I didn’t want to have an exorcism. Everyone was praying but me, and my eyes were wide open. This was one of the most frightening events in my life. I wanted out of the room. I couldn’t breathe. He had just confessed to doing all this torture and somehow what he had always assured me was right: No matter what, it was my fault. No one would stop him, no one would help me. I was scum. He was holy; he just needed a quick touch up. “Dear Jesus, I totally raped the hell out of this underage girl. You forgive me though, right?” Of course! He was free and clear, his soul pure as a dove. I remain soiled.
His mother told him she had seen demons around me. I had heard of overprotective mothers, but this was ridiculous. What was worse is that this guy believed his mom. He offered to pray for me. Guys- a word of advice: It is a complete mood killer to tell your date that you are praying for her immortal soul.
I actually tried to convince him I was not possessed, which is a sad thing to admit. It seems like something you would not have to do, but, alas… For some of us who grew up in a fundamentalist back ground this is par for the course. It’s eerily similar to the Monty Python skit about the witch. People love killing witches. It doesn’t matter what you do once someone decides they have seen the evil in you, either. Everyone else is dying for some entertainment, so now they see those damn demons too.
Were you physically attractive to someone? You are a witch. Did you dye your hair? Hate to break it to you, but you are a witch. Did you read books about evolution? You invited satan and his evil hosts in, sweetheart, and you are most certainly a witch. Did you eat cheese? Heavy cream sauces? Did you drink caffeine? Did you pierce your ears? Good heavens, gather round, we have ourselves a witch! The prayers were flung at me hot with accusations. They were tawdry, these prayers. I don’t know why I still had the capability of being shocked after everything, but there I was. Shocked into silence, staring at this guy who claimed he loved me. After that point, he treated me with less respect. I can’t believe I must say there was an after that point… I try to give myself a break- I was young, okay?! After all this talk of demons, the guy still claimed he was interested in marriage. At that time, I thought of myself as damaged goods. I was convinced I should take what I could get. One day I burned my back pretty badly on a hot radiator. My sister was spending time with us, and was surprised at how callously he treated my medical needs. She was an awesome sister and shared her concerns with me. I blew her off that day, but it stuck in my mind. Shortly after that, we were in a car accident. As the car spun out of control, my delusions about being a good wife were shattered. I knew if I lived, I did not want to live like this. I could not marry someone who saw evil in me. I could not be expected to confess my bullshit sins to some judgmental preacher. I would never allow myself to be subjected to a Monty Pythonesque mob of witch haters again.
I ended the relationship. No one has accused me of being possessed since. Cross Posted from NLQ Voices
Ryan Bell and the Pursuit of Knowledge
I think the pursuit of knowledge is always beneficial. It doesn’t matter how you came to the decision that it is time to reflect and read about view points different from your own. So what that Ryan Bell is writing a book to document his process? I wish I could go back in time and tell myself to do the same thing. How can I capture the emotion I felt at reading Carl Sagan’s eloquent explanation of the solar system some 14 years later? The feeling when I finally read a book by Richard Dawkins, who gave me science- that world that had been previously denied as the devil’s territory? My heart raced, I sweated, and I felt faint. I felt a weight lift from me. I was not the most important of creatures, one of god’s chosen in the remnant church. I was not about to be tortured, because it was not the end times as taught by the prophet. I no longer was cursed by the sins of my ancestors. I was free of the sin that was put on me as the result of rape. I could listen to secular music, and revel in the beauty of opera; I could dance! I am on one teeny tiny planet, with an atmosphere, and a moon that reflects light. I am an amazingly unlikely outcome of genetics. The world is full of these beautiful moments that I can appreciate because they are not tainted by sin. They are the remarkable outcome of thousands of years of evolution. When I stopped believing in the literal word of the Bible, and the Prophet, my depression became less marked. I came from the religion that Ryan Bell came from. By his choice to live as an atheist even for one year, he is losing everything he built. I’m not sure that most people who are criticizing him understand what that means. He lost his career. The community he loved has disowned him. Unless his family is on the very liberal side, they may disown him too. Seventh Day Adventism is very insular. They believe they are the remnant church, and everything outside of them is worldly. They do their best to avoid anything worldly. You can go your whole life without having to deal with anyone outside the church. They have their own churches, schools, and hospitals. They have their own television network, as well as publishing company because you are discouraged from reading anything that is not the bible or Adventist produced. In one of the towns I lived in, everything closed on Friday night in observation of the Sabbath.
I found out about Ryan Bell because I have a few of my old Adventist friends on facebook. They were talking about him. One of them claimed she could tell he wasn’t a good leader, and questioned his spirituality. If you are not all the way in, as demonstrated with Ryan Bell, you are out. You can not change the church from within for very long. It does not want to be changed. His big sins? He championed LGBTQ and women’s rights.
I am glad he has decided to use his platform to talk about his experiences learning. He has come from a place where even thinking about questioning the status quo is sinful. I think he should be cut some slack. Who knows how he will feel in a year? Maybe he will be a Christian, and maybe he won’t. The point is, he will have been able to ask himself what he believes.