let’s not put it in stone.

September 25, 2014

second and third opinions solicited. panic predominately over. i have a significant hearing loss. this is to say, i know my hearing is more than marginally impaired. i’m not willing to condemn myself to anything being permanent and i’m certainly not going to acquiesce to the truly unfounded notion that in just a couple of years, i’ll be profoundly deaf in both ears. i’m cutting out ototoxic medications. i’ll be wearing my protective ear-gear when i need it. and as this hearing loss has been cooking, i’ve already discovered ways to compensate and adapt. i’m sure that as this all evolves or dissolves, i’ll continue to find ways to survive and make do. this is, after all, the way that those of us who have been living with chronic illness for this long have learned to make it through. the hits might keep coming. and we might find ourselves needing to dig deeper to answer the call. we may be constantly pushed to the edge of what we think we can and cannot handle. it might not look graceful or pretty. we may have extended periods of anger, self-pity, depression. we might bounce back with an effervescent air about us that scatters clouds from the sky. the next day, that might be gone, replaced by dark and heavy cloud cover, one that blocks out the sun and beckons in the night. this is life on the roller coaster of lyme, tick-borne diseases, autoimmune illnesses, acquired syndromes and everything else that crops up on our radar.

i don’t remember buying this ticket, but i’m clearly along for the ride.

i had a long day yesterday, got stuck in traffic on my way back into brooklyn and started leaving pathetic messages on my partner’s voicemail around 10pm.

“hello? hello? you’re not answering, which probably means your phone died and that means you’re not going to hear this in time to prevent my untimely demise. i’m starving. everything will be closed by the time i get in. i haven’t eaten anything today… okay, i have eaten, but not enough” then i list the things i ate. “see? who could be satiated by coconut bars? i need food. real food. need… all right. well… i love you.”

then i left a similarly pathetic message about twenty minutes later. shortly after, to my surprise, i got a call back. the bear’s phone was not dead, for the first time ever. “you need me to feed you?”

“yes. yes, please.”

“i’m by pies & thighs.”

“i can’t eat anything at pies & thighs, you torturous dick.”

“ha. i know. okay. a bodega?”

“bodegas are always open. i want real food. i planned poorly and now i’m starving.”

this went on and then the sweet bear promised to find me food i could eat. when i came in, there was a box of scallops, artichokes and corn that looked pretty delicious. “i asked them a bunch of times. they checked with the kitchen. there’s no gluten or anything in it. you can eat it!” so freaking thoughtful, this one. i gratefully and happily devoured it, so quickly that i didn’t give myself the moment it takes to know i’m eating something that isn’t going to work out well for me. i think they thickened the sauce with wheat flour. blerg. almost instantaneously, my distended stomach tried to up and escape my body in an six hour long battle that left me in a rumpled heap on a pile of blankets, fighting the frenchies for leg real-estate in my new floor-bed. man, when those dogs want to be heavy, they’re 50 pounds of defiant dead weight, locking down the down softness. after hours of vomiting, whimpering, drooling and whining “you poisoned me,” i finally fell asleep in a little ball on the floor, where i remained for the next fourteen hours. i woke only to try to shove the meatballs farther down the blankets. i was never successful. they tag teamed my bed and they won.

the deeper i’ve gone into healthier life choices, the harder i fall when i mistakenly step off the beam. two years ago, gluten would have given me a swollen belly and a headache but not felt like i ate actual poison (and that’s really what it is to me. i’m not talking bandwagon here. i don’t know what works or doesn’t for you, but gluten tries to kill my guts and i’m not interested in that fight. at all). before i cut most chemicals out of my foods, bath products, laundry detergents, i know i had some type of reaction, but nothing like i do now. the chemical sensitivity shit is tough. someone’s perfume might set off an asthma attack for me. i now carry a mask with a charcoal filter in my purse for such occasions. the mold in my house is an invisible barrier that keeps me out. exhaust fumes make me dizzy and nauseated. i washed my hands with unscented dial soap at someone’s house, scratched my eye and the damn thing swelled shut. am i becoming more sensitive because i’ve really limited my exposure OR have we created a world so laden with toxins that we’re all headed down this path sooner or later? i know which i think it is. my partner, healthy as he is, is also noticing a decreased tolerance for chemicals in everything. he believes it’s because he just doesn’t have the same exposure that he did before he was partnered with a bubble-person. on an individual level, maybe it doesn’t matter. my long-formed response is the same- i’d like to be oceanside (pacific, please), in a small abode with solar panels and grey water recycling, growing my own food, composting, collecting rainwater, tending to my menagerie of animals, surfing each sunrise and battening down the hatches with a community who shares a similar vision.

in the meantime, maybe i’ve learned my lesson about take-out food. my aching body got schooled, but my still-swollen belly might need another round. i should have gone with the bodega. how often can you say that?


the greatest hits.

September 19, 2014

some days, you think you’re going to make it. you think that it will eventually be fine. you weather the storm the best you can. in the end, you might find some clear skies and peaceful nights. some days, you’re in the eye of it all, unable to see your hand in front of your face. the darkness feels impenetrable and terrifying. most days, you just are. you wake up in whatever state you’re in and you get through each hour however your body and mind will let you. you put on a brave face, it’s just about the only one that you have. you stay strong, whatever that really means. you put one little foot in front of the other and just keep moving. you know what happens when you stop moving. so you clean the house, because you’re the only person in your household who hardly leaves and you do it because there has to be some order to the chaos of your life. you just keep going, pushing, trying.

you go to doctor’s appointments. you get labs drawn. you write witty banter on the internet with people that you once saw in the flesh. you research anything and everything. you become an annoying know-it-all about things like the draught. you fall down rabbit holes. you laugh at people’s angry reviews of albums sold on amazon. you make secret dreams. you write poetry you don’t read to anyone. you draw pictures that end up in folders under the bed. you paint pictures that might be painted over later because you’re too tired or too broke to go buy new canvas. you take photographs that get buried on hard drives and old laptops. you lose images in boxes of undeveloped film and binders full of negatives. but you make do and you make nice because that’s easier than wallowing or reveling in misery. and then sometimes, you take a hit you didn’t expect and you find yourself falling into that pit, that loneliness. you drive home from another borough using all those kleenex you keep in your car in case the dog’s snout is covered in mud or your passenger has an allergy attack. the this is the kind of hit where you don’t want to tell people who love you how you’re really feeling. you watch helplessly or listen over the phone as tears line their cheeks and you kind of wish you hadn’t said anything at all. why take anyone else down with you when you’re falling this hard? why share the burden when there isn’t anything that they can do to help, when everything they say or do feels wrong? when anger and grief keep you from finding sleep at night? why give that to anyone else?

there’s always something around the corner, isn’t there? something just out of reach, just out of sight? just out of ear shot? there is, i know, but right now, i’m not looking there. i’m tired. i’m so tired of getting “bad” news. i’m tired of seeing doctors who have no idea how to look at the whole picture or who have discounted my symptoms for years. later i discover that i’ve sustained permanent damage from medications that were experimental. i sometimes feel like my medical gains are nothing compared to the losses. and today, it’s one of those days. it just is. please, don’t try to comfort me. it’s not the kind of day where that feels good. and i’m writing about it because i believe we all have these days. for me, when they’ve passed, i’m buoyant again. positivity reigns. i want us all to forget that i get down and depressed like this, but i’m human and imperfect and deeply flawed, like all of us. so i’m writing it because it’s real and sometimes, this is the only way i have to let go.

two weeks ago, i took a few hits to the head when a shore break hit a rip tide and i plummeted from the top of a wave to the sand, only to get pummeled by the swirl of waves coming in on the current. there’s a part of me that loves getting rolled by the sea. it reminds me of how small i am. when i’m floating around the pacific, my powerlessness is palpable. for some reason, i’ve no idea what, i can hold my breath for about three minutes, give or take. i don’t panic. i go limp and let myself get tumbled around like seaweed on the sands. but this time, i got sand in my ear canal and water in my middle ear. since i can’t take antibiotics anymore, i used colloidal silver and then just wore ear plugs whenever i went back in the water. i figured that if it didn’t go away, i’d just take care of it when i got back home. my hearing was severely compromised by the fluid and by the “pebbles” that were lodged against my eardrum.

so deep in the heart of flushing’s chinatown, i saw a cute, butch, ent who suctioned out sand with a horrible little stainless steel tube. she chastised me for wincing and said things like, “this doesn’t hurt. you have to stay still.” i can’t even have the car windows rolled down because it hurts my sensitive little ears. a vacuum up against my eardrum wasn’t exactly a walk in the park.

then i was sent off to the audiologist, who was, for lack of a better term, a total asshole. when she was done testing my hearing (which i’ve had done so many times in my life i knew i was missing at least a third of the sound cues), she said, “you have complete sensorineural hearing loss at 5000 and 6000hz and above and your loss at 4000hz is substantial. this is where you hear voices. in the next few years, that will go too. you will become deaf, for the most part.” i asked questions. she gave crappy replies. and my mom is an audiologist, so i’m pretty sure i was asking in the right arena. i wanted to know how she was so sure that this was sensorineural loss, permanent loss. she gave me a terrible non-answer. i wanted to know why it was sudden. she ignored me. i wanted to know how these results can change, considering that i just had nine chunks of rock sucked out of my ear. she was dismal, rude and mean. i wanted to cry, but nothing about this interaction made me feel like it was safe enough to even blink back a tear.

then back i went to the ent’s office where i was seen by the doctor i went to before my lyme diagnosis. he told me the same thing- i have significant hearing loss and it’s most likely progressive. “but i’m a musician. i’m a singer,” i said, desperation so thick in my voice. “there has to be something we can try. my brother-in-law is an otolaryngologist and a head and neck surgeon at stanford. if there’s surgery, if there’s anything, if can do anything to try to keep my hearing, i’ll do it.” there’s nothing we can do, my doctor assured me. “but this just got worse,” i told him. “it wasn’t like this before i went down in that wave.” this piqued his interest a bit, but my replies left him back where he started. “we could try high dose steroids, but it’s likely they won’t help.”

“fine. prednisone? i’ll do it.” i was on high dose steroids for years before being diagnosed with lyme (which, by the way, can be really dangerous and cause permanent damage, so please research and ask questions if ever a doc tries to give you steroids. i didn’t know any better back then). i told him (again) that i believed this is mostly likely nerve damage or ototoxicity. “oh, you were on ototoxic drugs?” yes, dozens of them. i’ve never been off of all of them, so for about 18 years, i’ve taken medications that can cause permanent hearing loss… only no one ever told me that. he had the secretary write up a script for prednisone, which i don’t fill because i already have it back home. i’m told to not expect a miracle. i didn’t tell them that i already am a miracle. i bit my tongue and my tears and made the long drive back to my hood in rush hour traffic.

and then i cried. i cried like i’ve never fucking cried before. for about two minutes, i drove like a complete asshole because i just wanted to feel something other than the sadness that i could’t push out. alone in my car, i had to admit to myself all of the ways i’ve been progressively compensating for my hearing. i now read lips, a skill i always wished i had as a child but never actually honed. i always watch television with closed captioning otherwise i don’t know what’s going on. i constantly ask people to repeat themselves. i need to see their mouths moving. the ringing in my ears combined with the static-like interference has prompted me to always have multiple sources of white noise on to drown it out. i cannot be in silence because what i hear is deafening.

i want them to be wrong. i want so badly for the three professionals i saw to be horribly wrong about their diagnosis, but i can’t completely discount it. they might be right. i disagree with the severity of the loss and that being completely irreversible, but i do know that my hearing is worsening and that scares me. music, singing, playing instruments- those are my lifelines. that’s what keeps me going. it’s sound. i don’t know what the world will be like without it and i don’t want to know. so i’m swallowing handfuls of prednisone, putting my faith in this hail mary and not in the doctors and resolving to change how i’ve been consuming meds and treatments. after i get through this round, i’m not going back to western meds, not for a long time anyway. not until i’m desperate enough to believe that what has made me worse will somehow make me well. i’m going to do anything i can to get my health back, but i’m not going to do this under the thumb of big pharma. it’s in their best interest to keep me sick and quite honestly, i just don’t want to play anymore. being told that i am going deaf is a new greatest hit for me and i know that means that i have to make some major changes to my approach. for a long time now, this hasn’t been working. i’m making changes and going back to my natural roots, when drugs were the last thing i reached for. i don’t know where to go next or what to do… but this just isn’t working anymore.

maybe it’s time to face the music? yeah. that.