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.


2 Responses to “the greatest hits.”

  1. Hi my dear sweet friend. I wanted to say “I see you”. And that “you matter” and make a difference. I also want to to talk to with you and will text later. My girl is in a bad place too. Not giving up. Want to share. In the meantime know that I am holding you in white and warm healing light.

  2. ana said

    Hi! I have Lyme disease too. I live in Europe but I would like to go to the States to get treated there. I would like to know if it is possible to contact you somehow and have your opinion on this :o) I am considering a couple of doctors that you mention in your blog. Thanks a lot in advance!

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