Sunday, June 14, 2015

70: on kidney failure, dialysis, transplant, ptsd, religion, & true healing

[here's a brief synopsis of my 2014, after i had to leave my job due to crippling panic attacks due to working in stage 4 kidney failure, and after i took klonopin for a month to try to treat those panic attacks after leaving my job, only to learn klonopin and coming off of it was 1000 times worse than the original panic attacks. getting off of klonopin, without sounding overly dramatic, was worse than everything i'm about to write about being in stage 5 kidney failure and dialysis, truthfully. klonopin withdrawal is something i still can't wrap my head around, and yet, in a way it was a blessing because i knew that i could get through anything if i could get through the withdrawal. klonopin is also contraindicated in people with kidney disease, something my prescriber apparently didn't know, and sure enough my kidney started failing rapidly after taking it, and during withdrawal. by the time i was off klonopin but still dealing with withdrawal, i was preparing for dialysis a lot sooner than my nephrologist (kidney doctor) had anticipated. this is the story of that process and where i am today, dealing with post-traumatic stress disorder and trying to live again after being blessed enough to receive a second transplant. i'm thankful to all the other people on tumblr who've shared their journey with fsgs, transplant, dialysis, plasmapheresis, and ptsd. it's because of these people and their stories that i'm trying to find the courage to share my own. i began writing this piece weeks ago in the present tense, a choice that annoys me now, but anyway, here it is. i'm choosing to publish this on blogger because combining pictures & video & text in tumblr seems very complicated.]
peritoneal dialysis (pd) involves a tube being inserted into your lower abdomen. the tube is there for as long as you do the dialysis. the inside of the tube hangs out in your peritoneal cavity, the space in your abdomen that all your organs are suspended in. i get the tube inserted on the fourth of july. my window overlooks downtown boston. my roommate is named maria. maria is middle-aged and writhes on her bed with crippling anxiety and fear. she has just been diagnosed with heart failure. just a few months earlier she was totally healthy, until she was diagnosed with fsgs and had to start dialysis shortly thereafter. she's still getting the hang of it. she went to the hospital for a stress test where they found that her heart is pumping at ten percent. she says she has been feeling weak and her pulse is always very high; those were her only symptoms. she cries out, over and over, how can this be happening? why is this happening to me? they give her xanax, and she says it's not working. she can't stop shaking and moving and she can't sleep anymore, ever. she speaks with her children on the phone, in tears. the nurse comes in and tries to calm her down. she is inconsolable. she decides to lay upside down in the bed to see if this will help. she asks for more xanax. her consciousness is excruciating. she asks the doctor why this is happening. he doesn't know. maria appears healthy. she is a pretty woman and she looks fit. my heart breaks for her. i pray for her and i try to write poems for her. the poems for maria remain drafts, unfinished. words suddenly capture nothing. robert frost said "poetry is when an emotion has found its thought and the thought has found words." both these things stop happening for me. i tell maria the following day that i've had fsgs since i was four years old and my first transplant is failing because of it. i only tell her because she asks me, and i worry this will make her more depressed. whereas people with other kidney diseases can get a transplant and keep it for 20+ years, the recurrence of fsgs in a transplant can shorten its lifespan greatly if not successfully managed. there is no cure and it is difficult to manage at all, except with the use of various drugs that are largely experimental, all of which have side effects and most of which suppress the immune system. my first transplant, given to me by my dad in 2010, lasted four years before i needed a new one. maria and i have the same doctor and he is going back and forth between our beds talking to us about similar things. she tells me about dialysis, which i am about to start training for. she is waiting for her first transplant. she needs someone with type o blood, like me. her brother traveled from brazil to donate, but when he got to the states it was revealed he had the wrong blood type, even though a test in brazil determined he was type o. maria and her family are devastated. how can this happen? all the horror unfolds at once.

i think about the fireworks the year before, in amherst. i'm excited for pain medication only. after the tube is inserted a woman comes in to do a demonstration of pd. it all seems so complicated: the machine, the tubes, the bags, the solution, the mask, the gloves, the hand sanitizer, the order in which you must do these things, the care with which you must do them.

she wears an apron that has a tube attached to it, mimicking the tube that goes into my abdomen. i absorb none of the information because i'm on pain medication and too overwhelmed to concentrate on anything. they take the dressing off the tube entry point to clean it eventually and the sight of it makes me want to run from my body. they teach me to clean it but i can't even bear to look at it. use antibacterial soap every day, go around the entry point in an outward circular fashion, so as to bring the bacteria away from the entry point. rinse well, and dry well. put some antibiotic cream on it. bandage optional. if it gets infected, you run the risk of peritonitis, an infection of the peritoneal cavity, which i am told is extremely painful and sometimes fatal. to treat it you put antibiotics directly into the peritoneal cavity through the tube. that night they want to try passing dialysate (a clear dextrose solution, dextrose being a type of sugar) through the tube, just to make sure it's working okay. the way that pd works, in a nutshell, is this: there's a membrane lining the peritoneal cavity across which an osmosis can occur. about two liters of dialysate is pumped into the peritoneal cavity through the tube by the machine (called a 'cycler'), after it is warmed up so it doesn't make you freeze from the inside out, something i did one time after forgetting to warm it up/i shook under all my blankets for an hour, the cold radiating from the inside out. you let the fluid sit in you for a certain amount of time, and this is called the dwell period. my dwell period was an hour and forty five minutes. two liters of this stuff just sits in you, making you feel pretty bloated and uncomfortable, and while sitting, it miraculously uses the membrane to pull out toxins from your blood, toxins that your kidney(s) can no longer filter out because you are barely making urine anymore if at all (i was, fortunately). it also balances your electrolytes somehow, though it manages to take off too much potassium, so for the first time in years you're suddenly on a high potassium diet instead of the low potassium one common to most kidney failure patients, which is one of the best things about this type of dialysis, aside from the independence it allows you, especially as compared with in-center hemodialysis treatments. a banana in the morning without a panic attack to follow. a cup of orange juice for the first time in three years: deep, deep joy. after the dwell period comes the drain period, and the machine drains the two+ liters of dialysate, with all the extra toxins and electrolytes it pulled out of you, plus all the extra fluid that might have been sitting in you all day long, since you barely pee anymore. you're on a fluid restriction, since you have no way to efficiently get rid of excess fluid. your dialysis is your kidney now. if you didn't have this kidney, the fluid would accumulate in your body and cause swelling, high blood pressure, trouble breathing, and eventually heart problems. my blood pressure is always very low during and after dialysis. so low that i feel very dizzy and sick every morning. the fluid drains into a big clear bag on the floor. the fluid is clear, and if it's not, it might be a sign of peritonitis. you have to inspect the bag of "effluent" every morning to make sure it's clear. i'm told that during my period, which i still get because my body is determined that i might bear a child with one kidney functioning at five percent (?), the bag might appear reddish. i don't worry about this until one morning i wake up and the entire bag is deep, blood red, i feel a panic wash over me: am i alive? did i bleed to death? i didn't even have my period. it turns out, for most women, i think, a few days before your period, some menstrual blood floods backwards through the fallopian tubes and into the peritoneal cavity for some reason, only you can go your whole life without knowing this if you never do dialysis. here's a picture of one of my drains either during or right before my period:

the first time they put fluid into the tube to make sure it's working and positioned properly in my abdomen, it hurts. the drain hurts more, which they warn me of in advance. it feels like a knife in my bladder, a pain i experience many times over the next five months. i cry and tell them to stop. we do it again the following day. i leave the hospital and start training in somerville three times a week. i feel so sick during these sessions that it takes every ounce of my being to concentrate. i can't drive anymore. i break down regularly in front of celeste, a girl about my age who is training me. one day i can't breathe i am crying so hard. i really want more than anything to just die. the prospect of even going through another transplant is unbearable to me, especially with the risk that the fsgs could attack that kidney as well. at this point i have no hope, and i'm getting by on the hope that i might have hope again some day, i'm getting by on memories of goodness, memories i can't even feel. the process of dialysis is so degrading, so foreign, so unnatural and so frightening to me that i'm not sure if i can go through with it. i know i will be living with a virtual stranger, performing these treatments every night on my own. there is no family home anymore so i'm renting a room from someone my sister is dating on and off. i'm afraid i'm too sick to be attentive enough to every detail, that i'll make some horrible mistake. my brain is soaking in toxins and i feel like i'm already dead, although it's hard to tell how much of this might still be the klonopin withdrawal. every waking moment is rife with the potential for a panic attack, like i've taken some awful hallucinogenic drug that does not leave my system and that fundamentally alters every aspect of my perception. i sleep with the light on every night. i have no appetite. everything tastes and feels wrong. i weigh 100 pounds and i have no sexual desire, and i no longer fathom how sex is a desirable thing. it seems like an arbitrary meeting of arbitrary body parts. during this time i have an amazing experience that i wrote about here.

i have to learn to give myself epogen shots again too, to correct my anemia, since my kidney is no longer making the hormone necessary to stimulate my bone marrow to make red blood cells. i finish the training and move to my new apartment and the first night of dialysis, my boyfriend is with me. i sit on the edge of the bed panicking as the fluid floods into me. he has to tell me that i'm breathing and that i'm not experiencing "overfill," when you have too much dialysate in the peritoneal cavity and it suppresses your breathing. you're supposed to be able to sleep while you perform dialysis, too. my dialysis is set for eight and a half hours. some people have to do it even longer depending on how long their dwell is and how many dwells they need. it varies depending on how quickly and efficiently the peritoneal cavity transports toxins across the membrane. the longer you're on dialysis, the more "worn out" the membrane can become, making your dwell times longer until eventually you can no longer get by on peritoneal dialysis and you have to switch to hemodialysis, though it takes years to reach this point, i think. i hardly ever sleep on dialysis in the beginning. i watch the machine all night to make sure it's doing its job, draining and filling at the appropriate times and in the appropriate amounts. i don't trust it. if you are constipated at all, or even if you're not constipated but just not totally empty, or if you've just had a meal beforehand, the drain is excruciating, or at least it was for me. i will never forget this pain, how it would jolt me out of sleep in an instant and cause a sort of indescribable rage followed by sobbing. i sleep with a commode in my room since it is not recommended that i disconnect to go to the bathroom, since every disconnection increases the risk of infection (since it exposes the tip of your transfer set- the tube through which the dialysate flows in and out of you- to the air. every time you connect or disconnect everyone in the room needs to be wearing a mask, the windows need to be closed, fans need to be off, and you need to wash your hands thoroughly). i can walk ten feet from the machine; this is how long the tubing is. in the morning i empty the effluent (the drain bag, heavy as hell with more than eight liters of fluid in it, since i had four dwells per night) into the toilet and throw away the bags, throw away the tubing from the night before, break down the cardboard boxes. every month you have to inventory your supply and order more. if the power goes out and you can't use your machine, you have to do a manual exchange with an IV pole, and that's a whole different matter. my machine took up so much electricity that it made the lights in the kitchen blink, and one time when too many things were on in my room and the kitchen at once, the lights went out.

it takes a while to adjust to dialysis. i expect to feel better than i do after a few weeks, but eventually i feel better than before dialysis and i learn to sleep through the dialysis. i meet up with old friends at a bar in my hometown. i feel anxious and i feel a deep desire to connect with these people, with anyone. there's only one other guy not drinking, and it turns out he has health problems too and rarely goes out. i recognize him from school years ago. we talk a bit and i feel a camaraderie with him. i leave the bar early because i have to start dialysis. i don't see those friends again the entire summer, partly because they're busy probably, partly because i never reach out because i can't and don't want to drink, i tire and feel sick very easily and i feel like i have nothing in common with anyone. a couple friends from western mass come to visit me at some point and we eat seafood and walk on the beach, which is nice. i make myself walk on the beach almost every day during this time, even when i feel too sick. i even go swimming a few times, because, amazingly, you can swim in the ocean with a pd catheter. for some reason, spending time alone on the beach every day during this time is one of the most painful things to remember now, even though it seemed like the healthiest thing to do at the time.

my sister sleeps over a lot because she's dating the guy i'm living with. he is easy to live with and he generously, often unprompted, carries dozens of heavy dialysis equipment boxes up the stairs every month. i feel much safer when either one of them are present, or when my boyfriend is visiting. my housemate often works the night shift so it turns out i'm alone pretty often. the fear i feel when doing dialysis alone, or sometimes even just being alone during the day while feeling sick, is staggering. one night i wake up with debilitating cramps in my legs. i wake up and call the nurse on-call and she tells me to eat something very salty; it's possible the dialysis is pulling too much salt out of my system. it takes time to know what and how much to eat to prevent things like this from happening. another night something else happens. my housemate is a veteran with ptsd. he snaps one night in the middle of the night, drunk, and beats his friend severely over something extremely small, and something that i did but for which he blames his friend. i can't say much more about this night except that i felt another layer of my sanity, that innate feeling of safety we all take for granted, peel away and disappear in an instant. the fear, vulnerability, and guilt that i felt stunned me again and again. the violence i heard made me feel physically sick. i thought about how fucking awful the military is, how awful war is, and alcohol, and every thing. i sat on the edge of my bed and shook for a long time. i moved out the following month to live with my mother on the third floor of an old mansion that is now a communal house.

i continue the dialysis in this house. when everyone else has gone to work for the day, i run downstairs to empty the bags. i don't want anyone to see me do it because i'm embarrassed by it. i'm scheduled to receive my second kidney transplant on december 16th. my friend is giving me his kidney. he knows the risks, and he knows that my first transplant only lasted four years when it should have lasted much longer. he wants to do it anyway. he seems so relaxed about it, but then again he always seems relaxed. i still can't comprehend his generosity, 'generosity' itself seeming like a lousy word for what the thing actually is. i can't comprehend the donor meeting where five people, two friends, two family members and my boyfriend, got tested to see if they were compatible. one of those friends was one of my best friends growing up, and i hadn't seen her since we were maybe thirteen. we talked about the neighborhood we grew up in and all the things we used to do. we both had specific memories in mind that we both still cherish. i couldn't believe she offered to donate when we hadn't been in touch for so long, but she said i was a major part of her childhood and some of her best memories. i've sometimes felt weird cherishing these memories so much, worrying that the other people in the memories have forgotten and have better things to cherish now, that i'm somehow stuck in the past clinging to memories that reveal a kinder world (i am), and i guess maybe this isn't true, or it's more common than i think. miraculously -literally, it is a miracle- everyone at the meeting ended up being compatible. i felt and feel somehow embarrassed by it- grateful, and stunned, but embarrassed. i think of maria upside down in her bed. i think about her and i wonder if she's still on dialysis. i think about all the people who go years on dialysis without finding a donor, waiting on the list, and i feel embarrassed and even ashamed that i should have five people willing to donate who are compatible with me. it seems absurd to be so blessed.

the transplant date comes so quickly. the last night of dialysis seems so monumental. you think: tomorrow night, if all goes well, i won't have to do dialysis. you forget what it's like to not depend on a machine for your survival. i only dreaded the pain of recovery. after my first transplant i couldn't walk upright for a month. i dreaded the high dose prednisone too, in the hospital. i remembered the dreams, how vivid and real they seemed, like i fell asleep into actual hell. i dreamed my brother was covered in scalding, wet tar. his face was falling apart in my hands and i was trying to tell him it was going to be okay, trying to really convince him. i dreamed about an obese woman on a train, her stomach split open and oozing ground beef onto the floor of the train, the oozing in time with a horrifying beat and song that were actually somehow objectively evil.  i dreaded more plasmapheresis treatments, since the last time i did plasmapheresis i got a blood clot in my neck and had to stop the treatments prematurely and start a blood thinner regimen. a week before the transplant i had a plasmapheresis port implanted in my chest. plasmapheresis is similar to hemodialysis, or at least it looks the same. you're hooked up to a machine that removes the plasma from your blood and replaces it with albumin, a kind of protein. the thought is that the fsgs, the disease that attacked my first kidney, is in the plasma, and if we can weed it out of my body before the transplant, we'll give the new kidney the best possible chances for success. some people go into fsgs remission from plasmapheresis, but most seem to relapse after the treatments cease. here's a video of me doing plasmapheresis.

plasmapheresis sends my ocd into overdrive. i start performing the nonsensical rituals i performed in my childhood, counting things and turning in certain ways and obeying arbitrary but completely real rules that arise in some intuitive part of me, seemingly, desperate for a sense of control. i don't trust anyone doing the procedure, and my anxiety during this time is unbearable once again. the possibility of an infection traveling to my heart due to improper cleaning of the port tubes, or the possibility of the wrong clamp being open at the wrong time and air traveling to my heart and causing instant death is never far from my mind, however improbable. also, the fact that it would be so easy and so instant to die in this way is disturbing to me, because my depression at this time is extreme. i'm still waiting to feel hope. i feel guilty about this because i'm scheduled to get a transplant but i'm still not sure i want to live, but i see now this is because i don't remember what life feels like separate from intense fear and dread, because i'm already suffering from post-traumatic stress disorder at this point. after i had the plasmapheresis port put in my neck, my mom, who has a long history of addiction to prescription pain killers, stole my pain medication from me. i wrote about it here. she stole pain medication from me two times after this as well. one of those times, she replaced my pills with similar-looking mystery pills, and she couldn't tell me what they were. she didn't know if they would hurt me and she didn't care because she wanted to take my pain medication without me noticing. this happened christmas eve.

i woke up from the transplant in no pain, a miracle. a nurse was washing my back with a warm facecloth, and i felt intensely safe and loved for the first time in months, for the first time since the mystical thing that happened in july, like a good feeling had finally broken through to me. i kept thanking her and telling her what a good nurse she was. all i remember is feeling good, euphoric even. the news was all good, the kidney was working fantastically. my friend and donor was doing well. i walked on the second or third day with very manageable pain. i was astounded by how much easier it was this time around. i didn't have nightmares from the high dose prednisone. i did go ten days without sleeping after leaving the hospital with the prednisone still in my system, and i did have a meltdown from lack of sleep, but overall it was much more manageable than anticipated. the kidney is still working amazingly, and there is no sign of fsgs. i can't express how much of a blessing this is. my friend is still doing well too and is back to feeling totally normal. i am incredibly blessed. i have had two setbacks since the transplant, the first being hemolytic anemia from dapsone therapy, the second and current one being severe fatigue that i'm pretty sure is adrenal fatigue from prednisone and stress. i am endlessly thankful that neither of the setbacks involve the kidney. i am still anemic but that, too, has improved greatly. my hair is falling out from the immunosuppression but i'm taking a supplement to help with this and just praying it gets better soon.

there is no way to express what it feels like to not have to do dialysis every night, to have that burden lifted, although even that burden is a gift, which is something i have to remember. if the experience of kidney failure and dialysis has contributed to my ptsd, i must also remember what it must be like for those who don't have access to dialysis, or who have to travel to do hemodialysis in a medical center three times a week, who have so many more dietary restrictions and even less quality of life. i need to remember that every single problem i have right now and have had in the past is a gift compared to what my problems could be. the realms of suffering are limitless. intellectually i know that the realms of joy are also limitless, although i don't feel this as much as i feel the limitlessness of suffering. i have faith i will once again experience this potential for great joy, but right now the truth of my life is that i'm dealing with the sort of spiritual vertigo caused by reaching a certain unknown point of the limitlessness of suffering.

which brings me to where i am now. incredibly grateful to be alive, to have this opportunity. deeply humbled. trying to rebuild my life, trying to convince my mind that i'm now living and not dying, that it can relax and feel hopeful again and conceptualize the future again. and yet this process has proved incredibly difficult because of ptsd. things aren't perfect, and i feel great shame because of this. great shame that i still struggle much of the time, physically and mentally. i know both of these will get better, but sometimes i don't feel it, and this is where the shame comes from: having the hope be confined to intellect only, despite multiple miracles having just occurred in my life. the transplant itself but also the absence in the transplant of a disease i've lived with for twenty-four years- this is indescribable to me. but my mind is still bracing for trauma and wincing when it doesn't need to. horrifying scenarios play out in my head against my will. i have the strange experience of being unable to feel my life or my memories most of the time, of feeling almost nothing despite a great desire to feel something. everything feels unfamiliar much of the time. when i think about dialysis, when i think about being so sick, it feels like someone else's life, and yet i can remember in moments the feeling of being so sick, the feeling of death, existing in that otherworldly dimension and being completely unable to communicate anything about it. i feel numbed by what my mom did to me, i feel haunted by other memories i can't actively engage with. i have nightmares now about needles in my feet, about tubes hanging out of my abdomen, about being brought in for surgeries i don't need, accidentally taking medications i don't need, about losing the kidney to fsgs or to something else. i dreamed last night i looked in the mirror and i was bald. i still have no appetite and no sex drive. my relationship has suffered immensely because i sometimes can't locate my personality or my sense of humor; everything but silence feels like a performance of sorts, and i can never forget this long enough to reintegrate and "re-enter" my self or the world.

i try very hard to have faith, and i do have faith. but like all faith, it is imperfect. being diagnosed with fsgs at four years old, being in and out of school doing very harsh treatments to try to control the disease, losing my own kidneys and then my first kidney transplant to fsgs over the course of four years was obviously devastating, especially with very little familial or financial support (until i was granted disability benefits two years ago, without which i have no idea how i would have made it). the fsgs came back in my first kidney within a couple months. i have intense ocd about exposing myself to certain foods or chemicals, for fear that they will trigger a relapse, since nobody knows what causes fsgs in the first place. i struggle to not live with that fear, and i struggle to feel joy and to experience beauty and love, since it has been blunted for so long by trauma and illness. these are the very reasons for living in the first place, and so it is ironic that i should have this second chance at life and i should be struggling to engage with that life. i have periods of time where these struggles are lifted to some degree, and i recognize and cherish these moments more than i can say, to the point where i'm almost always crying tears of joy when i have these "breakthrough" moments. the intensity of the joy or love i feel when i can feel it redeems everything, of course, it is so completely humbling and overwhelming to just be alive in those moments, to re-identify with what makes life worth living, with what is actually divine about everyone and everything- it really does feel like a rebirth, like being resurrected from death, like being a child again. i have to believe that this alone is the "point" to all this, since it alone is enough.

there is no dramatic flourish i wish to impart with all this. i need to tell my story because i hold it inside every day and feel my sense of self dying and getting further and further away from everything and everyone around me, which is deeply scary. i know that i'm not the only one who's been through these things. there is nothing special about any of this. finding other young people online who have had to confront death and illness has helped me immensely, seeing that they experience similar struggles and fears and that i'm not abnormal, that it does get better. being able to trade stories and encouragement with these people has been vitally important, seeing that ptsd is a real thing, it is not a personal failing, and it is extremely common in people who've been through these things. if you're reading this and you're one of those people who share their honest experience and struggle online or in any capacity, thank you, again.

the rest of this piece is about how i've made the mistake of seeking healing through religion instead of spirituality. i realize this might not be that earth-shattering for the many people out there who already know what i'm struggling to learn, so i'm sort of prefacing it in this way. i also want to say that the mistake is a personal and anecdotal one, and i don't think being part of a religion is in itself a mistake. only when it accomplishes the very opposite of what it's supposed to, when it brings you further away from god, further into the fear and paranoia and self-loathing you're looking to heal through spirituality. i've struggled deciding whether to share this, as there's definitely a lot of anger, bitterness and confusion here and i wish i could write about it from a less emotional perspective, but then, i'm not sure this is possible. also, maybe the point is to just feel what i feel and not try to remove myself from it so that i can feel like i've superficially "overcome" these "petty" feelings. if i'm looking to overcome my ptsd, i need to become human again, i need to allow myself to be petty and not feel shame for this. i'm afraid my anger here might reflect the opinion that all religion is bad, but i'm fairly certain that all churches and all priests vary, as all people do, even in their practicing of the same religion. i have to admit to myself that i am the only one responsible for letting religion fuck me up so bad, especially because my obsessive compulsive disorder makes it impossible for me to practice religion in a healthy way (more about scrupulosity here), and probably because i started believing a long time ago that i was sick because God was punishing me. when i was a kid, just diagnosed with fsgs, i would pray constantly, and i remember thinking that if i wasn't healed or if something else didn't happen, it was my fault because i didn't pray "correctly" enough or i didn't "mean it" enough. finally when i was 12 and my grandfather died from pancreatic cancer despite my obsessive praying, i turned away from faith.

i turned back in 2012 when i read 'the sickness unto death' by kierkegaard, in the midst of a deep depression, grappling with the sudden death of a friend and with my slowly declining health. i would not have been able to get through the past few years were it not for prayer and faith. i have never officially joined a church, though i have been curious about one church for a while. i wasn't able to attend this church because i lived two hours away from it for the past year. i went back to it recently, as i moved back to the area. i wanted to speak with the priest about my struggles, about the impact ptsd has on the spiritual life. i wasn't sure what to expect, but i was expecting compassion. i'm not sure what i was met with, though. i told the priest i feel disconnected from the world and from my life and i feel traumatized and i have a hard time concentrating while praying, and i don't feel god's presence in my life, being unable to feel my soul and all. i basically articulated everything above and was looking for advice and encouragement. i was told that i'm not living the life of a christian and this is why i feel disconnected: i am "complaining" instead of being grateful and helping others and being of use. he said gratitude is the first step but that i am choosing to be despondent and depressed. he assumed that i compared my life to the lives of others and that this caused me anger, even though i volunteered no such information. i told him about my mother and he told me i had no right to judge her and that i am no better than her, which i agreed with. i asked him if i was still permitted to feel what i feel in a moment of such intense hurt, and the answer was essentially no, or that i should feel it but quickly strive to not feel it and to feel forgiveness and humility instead, since there is not much good in me either, or in anyone (his words). i didn't ask whether it was possible for forgiveness and compassion to coexist with feelings of hurt, whether it was possible for gratitude to coexist with despair. at the end of liturgy you are meant to kiss both an icon and the cross before you leave the church, and i explained to him that i'm reluctant to do this because i'm immunosuppressed, not because of irreverence. he told me that i can't protect myself from everything, and that if i were to die from an illness contracted through kissing the cross, this would basically be martyrdom and i should be grateful to die in such a way. he said many other things that i will not repeat here.

i left the church with an intense darkness weighing me down. if i felt depressed and shameful before going in, i felt much more so now. i felt even more anger and then i felt more shame for feeling the anger. i worried that my anger and my own ego were reluctant to accept any wisdom in his words. i wondered what i would have wanted to hear instead. i know that i wanted to feel some type of love. i know i am starving for someone to say to me: it's okay, you're okay, you're doing the best you can, you're not a failure. instead i felt condemnation. i have struggled to make sense of our conversation. i feel very angry and very hurt. i feel hurt because i wanted to join the church and now i feel unwelcome. i feel angry because: wouldn't doing my best to protect my health, by not kissing objects everyone else in the church also kisses, be an expression of gratitude, in that i am trying to protect the health that i'm blessed to have thanks to the transplant? wouldn't being careless in this way be an act of ingratitude? the priest said god blessed me with a second transplant for a reason; is that reason really so i can just die after all?

i think it must be easy for someone to recommend a romanticized death when they have not spent much of their life simply fighting to live, when they have been allowed to attempt to accomplish the things they want, to see their hope and their work materialize because it hasn't been repeatedly sabotaged by their body, when they have been allowed to work towards and achieve an enlightened state because the very body that hosts their enlightenment has not been the thing that needs the work. in the view of this person you live to repent and that's it. the personal is equated with the ego, and therefore feelings are not important in the face of the truth that transcends the ego and those feelings. your individuality is irrelevant, and your individual pain is irrelevant so long as you fail to transcend it by "choosing" not to transcend. i think people of this belief must have to work very hard to delude themselves into thinking they are repenting all hours of the day, that they don't have moments of enjoyment in their life that they take for granted, made possible by every aspect of health that they take for granted, and that these moments are what make their repentance both possible and bearable, are what make life possible and bearable, are what endow these people with the staggering hubris and privileged stance needed to recommend a righteous, premature death, to recommend a heartier repentance to someone whose suffering they haven't directly experienced and can't comprehend. i know if you lose those redeeming moments and the circumstances and people that make them possible, your whole life becomes urgent, involuntary, loveless, excruciating repentance. when you are suffering hard enough, at least physically, it is next to impossible to be "of the world," in my experience. you repent for the life you're unable to live. this is only possible if you have an adequate amount of self-hatred or obsessive compulsive disorder cloaked in spirituality, and then you can find fault in every thought you think and every thing you do. you will extract sin from the most neutral of actions, if only to repent further, paranoid that it's never good enough, and, in my case, paranoid that your actual life depends on it.

i've always wondered how so many christians can be republicans when so many of the teachings of christianity are at odds with the values of republicanism. then i think of the republican "pull yourself up by the bootstraps" mentality. in this scenario there is only the physical person and the boots they have on. the history of the person, their education, their background is totally irrelevant; they need only pull themselves up by the bootstraps to succeed, and the simplicity of this action is meant to mirror the more-often-than-not fictional simplicity of achieving success. i sat in front of the priest crying, telling him how i wish to feel my spirituality again, how i wish to succeed, to live fully, and i was essentially met with the religious equivalent of the bootstrap scenario. i felt that the very fact of my personal history was annoying, that my struggles were my own choosing, that my relative uselessness to others at the moment was due to my own laziness and self-absorption and not to the fact that i'm still not well, and that i cling to everything that i can't transcend because...i enjoy suffering? i'm not sure what the implication was, probably that i enjoy the sinning that causes the suffering. in retrospect it was all very republican. (i'm sorry if this political analogy is alienating for anyone reading this, if anyone has read this far, but it seems like the most appropriate analogy i can muster.) poor people enjoy their poverty in the same way sinners enjoy their sin. this simplifies things down to a level where one is absolved of any active effort to understand another person, while simultaneously conferring a convenient moral superiority onto the person. but whereas republicans know they aren't empathetic people because they don't value empathy, some religious people seem to conflate moral superiority with empathy, or rather they make the mistake of assuming a sort of default empathy exists under the oh-so-vast umbrella of their moral righteousness. in reality, these people also don't value empathy, because they view it as empathy with sin, in the same way that a republican might misunderstand empathy towards the poor as a sort of celebration of weakness.

i still don't understand how one might self-loathe and self-shame their way to God. the times that i have felt grace have been times of great love. when you receive love, mercy, and understanding, you are motivated to be generous with all of these things yourself. i'm not sure how this motivation can arise spontaneously except by grace. dysfunctional and violent families often produce children with the same characteristics. it seems unhelpful to accuse the children of these families of choosing these characteristics. when a thing happens, it can't help but happen to every part of us, including the parts of us that have not transcended anything. we do not choose this. post-traumatic stress disorder is a real phenomenon, whether you choose to classify it as psychological or spiritual. it has tangible, observable, and often debilitating effects on a person's life. this is not the spiritual failure of the person. i think of my housemate who had the violent outburst. i think of him seeking help for the horrific things he saw in iraq, and i think of someone telling him to stop complaining. to be grateful that he survived, to turn this gratitude on like a switch, or be ashamed that no such switch has materialized from him and for him. to suggest healing through becoming involved with other people is good advice, but to imply that one is neglecting to do this out of a despair of one's choosing seems ridiculous and unlikely to result in positive change. i assume many people with ptsd and with other issues don't seek help precisely because they're afraid to be seen as "complaining" or ungrateful. the issue must be acknowledged and the person's experience validated before healing can take place. furthermore, to become helpful to other people you must first be able to exist in their presence without having panic attacks caused by feelings of severe dissociation.

i will not say there was no wisdom in the advice i received, nor do i wish to remain angry about it or towards the priest, who has a kind, gentle way about him and who i believe meant well and tried to give me advice based on his own earnest understanding of spiritual truth. i feel sadness and conflict, but also some relief now that it is clear to me that this is not the church i should go to. my faith was not challenged by this encounter, just changed.

i think the first step to working through ptsd is to allow myself to feel what i feel, however shitty the feeling may be, without feeling shame on top of the shitty feeling. you can't pile shit onto shit and expect the quantity of shit to lessen, is the revelation i'm having now, the revelation i've had many times before but somehow never heeded. shame only adds to what you need to "give to God", while making it harder to give it. maybe there is a way to feel shame that doesn't paralyze you with feelings of unworthiness and self-disgust, a way to feel a useful, motivating shame. to me this would feel like mercy, though, like love. i think, going forward, that healing will come faster if i am kind to myself, and forgiving. this is true for everyone. i hope you're kind to yourself, you reading this. i hope you're healthy and i hope you know it, deeply. xo

Friday, July 12, 2013


a woman and her daughter were sharing a small bathroom stall in the public restroom in the grocery store.
i was in the larger one next to them.

the little girl said "mommy, when i touch buddy's tummy i can feel her claws."

the mother responded, "are her claws out when you touch her tummy?"

"no," said the girl.

the mother, confused, suggested, "those are just her nipples."

the little girl, frustrated, insisted "no...", and the mother said "do you mean that while you touch her tummy you also touch her paws?"

"YES," the little girl said, so relieved to be understood finally, so unaware that a stranger was six feet away, enjoying her frustration while relating thoroughly.

Sunday, October 21, 2012


today my feelings ride me,
a big tired elephant in the circus of
the heavy things
doing the languid ballet in my brain, around you

one time you made me cry
because your kindness surpassed
whatever threshold I had established,
and another time you said
"one day, one day" and
"I think about your pale skin and dark hair"

if I ever made you cry
maybe it was because
when we used the word “love”
we were summoning different chemical arrangements;

mine are down by the dried river, cupping their hands
in the ghost of the stream
as it twists snakelike
towards the rumor of an ocean
whose waves gossip your arrangement,

gossip Light while my pain sleeps in me
like a second skeleton
beneath my textbook one.

I feel feverish draped over it,
like I’d rather drape
over any other thing, but

ancient memory of my own mortality
blooms before it realizes itself, it
feels like half my tombstone
is in my stomach,

growing like one of those rubber toys in water.

sometimes it pauses,
reflects on its growth
and apologizes to me
and it fucks off
and I imagine whatever it is that you imagine for me
and I bask there:

"one day, one day."

I think there’s a meteor shower peaking tonight
above and between us
and I bask there, in the whole sky,
I bask across the things between us,
I leave my second skeleton behind

and in leaving it behind I discipline it, I make it
subordinate to the minutes that precede its waiting secret,
as I wade in the preceding minutes that lend me my history.

it looks on in silence so as to not offend the wading,
so as to not alert me to the inevitable death that is my chaperone,

and I can mistake the silence as sacredness or respect
if it obscures the skeleton lovingly.

and if it is lovingly then how can I be mistaken
and if I know love, it is in the retreat of that prescient chaperone

it is in the way we fall down the same set of stairs,
stopping intermittently to achieve something mutually distracting

it is in the way we revel in that which is mutual,
as if it betrays to the skeleton the loveliest thing of all:

we all die
riding the same horse

Saturday, September 8, 2012


i was doing what i do best: waiting for a customer to walk up. the music was unoffensive and frank sinatra. a man walked up and put a few items on the belt.

he was old and appeared sort of glum. when i asked him how was doing he cleared his throat and said "okay" very faintly, like his throat was sick. i rang up his stuff and told him his total. he paused and looked at me, smiling unexpectedly. he said something to me that i couldn't understand because his voice was so quiet. it sounded like "how are you," but with the first syllable missing, so i said, "how am i?"

"are you," he said
"how am i?"
"are you"
"umm, i'm good thanks"
"no no, just are you, are you," and at that he lifted his palms outward to indicate that we seemed to be alive and in a grocery store

i thought "this is probably happening because i'm going to die soon," followed by more palpable concern for my thought reflexes and some unease at how confrontational the question seemed, at least in my immediate interpretation of it, which was admittedly laden with fear

i said "well, does it seem like i am?"

he smiled again and said "yes, it does. i wouldn't have asked you if i didn't think you were."

we exchanged money and i watched him walk slowly across the parking lot through the window, feeling some vague but warm thing that lingered into the evening