many of you have already heard the news that i'm permanently deaf in my left ear (most likely from weight lifting), but it seems many have not, for i'm asked daily from unaware friends. aside from 2 facebook statuses, this is my first update about it weeks. this will be my final report concerning this whole ear situation. this post is ridiculously long, but it's the end of the book. i won't bring any more attention to it. it aims to answer every question i've been asked. anyone who makes it through the whole post gets a cookie.
i really appreciate everyone's offered help, condolences, prayers, and inquiries during this ordeal.
the table of contents:
- (a) succinctly inform friends of my latest status/summary
- (b) share my thoughts about 'handicap'
- (c) complain about health insurance
- (d) epilogue:
- (d1) current day-to-day
- (d2) summary of all doctor visits, procedures, and diagnoses
(a) latest status/summary:
surgery went fine. ear still bleeding due to the surgery, but not too much pain or nausea. i'm fine :-)
- saw 6 mit/harvard doctors:
- condition: sudden sensorineural hearing loss (SSNHL)
- affects ~5 out of 100,000 people per year; average age: 43 - 53 yrs old
- roughly less than 2% chance of regaining hearing
- sorted likelihood of causes: weight lifting, virus, unknown other
- had 4 injections into ear drum over 2 week span
- had surgery to help w/ balance (lifted up ear drum, went behind it to patch skin onto oval/round window tears). general anesthesia is amaaazing.
- hearing tests:
- right ear has perfect hearing at 0 decibels.
- left ear can feel ear drum moving before i hear 80 decibel noises.
- when words play at the maximum volume, left ear hears them as forks scratching together at best. it's painful before i hear sounds.
- constant ringing/ocean noise may take 6 months to many years before i'm unaware of it
(b) sharing my thoughts about 'handicap'
permanence?
this experience has forced me to think about the concept of handicap and the idea of permanence, neither of which i've ever been able to fully imagine with any realness. combined together, now that's especially hard to pre-imagine. it might take me a while to fully grasp permanence, as nothing in my life has ever been permanent before. my choice of college, where to live, what career to pursue, etc. all of these choices can be as temporary as one wants.
okay, my situation isn't temporary. sure, it sucks that i can't fully hear and enjoy music like i used to, that loud social environments like restaurants are difficult and exacerbate the ear ringing, and that having conversations with people on my left is hard. but, i can't change that now, so
let's focus on the rest and try to measure what it really means.
what is a handicap?
i believe a handicap can be described as an impair of one's ability within a given domain. for example, think of golf. golf defines a label "handicap" to portray one's weakness/inability. it's not to say that the golfer can't play at all. he can. it's just a metric to suggest how difficult it is for the golfer, given his current skills.
the golfer gets better, his handicap lowers. a handicap is adjustable and is strictly defined by the actual difficulties encountered at the given task. once the golfer becomes perfect, his encountered difficulties approach 0, and he essentially has no handicap.
let's abstract the concept of handicap, while keeping its definition constant.
try to think of something that initially gave you difficulties, something at which you weren't initially great. for me, i started playing baseball when i was 7. initially, i wasn't good at fielding grounders. one could define this as a handicap; my inexperience with baseball was a handicap. but
over the years, i got good. by trial and error, i worked at the objective and i learned.
okay, that example still concerns a sport, so the analogy is clear. but i'm asserting that the definition still holds across all domains, whether is be painting, communicating, reading, or anything else; there's a gradient to assess one's inability/handicap in anything, and it -- either directly or indirectly -- can be improved over time.
well,
what about when people are placed into slightly more seemingly difficult, uncontrollable situations that yield handicaps? for example, what if one looks at one's genes or the family environment in which one is raised. that's a slightly less controllable thing, right?
my parents are amazing, and they did a great job of raising me. my eco-social environment/neighborhood could be viewed as limiting though. i was raised in a lower-middle income area. although i don't live in GA anymore, my parents still do. same place, and it's still home to me, ever since i was 4. that place has a lot of charm to it. it means the world to me, so this is not a diss. but, the neighborhood has some little childish gangs present, graffiti on the fences of several of the suburban houses on the street corners, and education is far from promoted.
for example, growing up, i didn't know what college was. i personally didn't know a single person who had gone; nobody amongst my parents, neighbors, extended family, friends of family, etc had gone. i love my uncles and aunts, and it's sad that many of them are essentially illiterate. some quit school in 3rd grade. the point is, talk of college didn't exist. when i was in 11th grade, i would often hear fellow students talking about college as if it's the default, next step... so i figured i should go. it seemed important.
i was never inundated with information or advice regarding education. i wasn't a great high school student either, merely an A/B student who barely graduated in the top 30% of my class. i didn't really have any lifelines for the college admission process. it's not my parent's fault, i mean, that whole domain was new to them too. i distinctly remember having 2 resources for applying to colleges:
- bought the princeton list of colleges from barnes and noble. looked through every page to find out which schools to apply to.
- heard of my high school's valedictorian getting rejected from some school named MIT but into harvard (i knew ofharvard, but MIT was vaguely familiar to me.) this served as the upper-bound for my concept of education.
so, one could say i was pretty unprepared and that i had somewhat of a handicap compared to other kids who were entering post-high-school education. i realize many kids had it worse, yet many were better prepared than i, as they were
experienced with SAT prep classes, tutors, writing help, and advice from adults.
this seeming handicap was one where i could do little to affect my starting point, but i did everything i could to minimize and overcome any obstacles to get to where i wanted. honestly, i never viewed my lack of college preparation as any handicap or anything; i had what i had, and it was merely time to play the game with the cards at hand.
i never felt like i was at a disadvantage amongst my college peers. upon starting college, i quickly realized everyone came from different walks of life, was filled with different preparations, and was equipped with different intelligences. this was obvious. i knew it would do me little good to concern myself with what AP classes so-and-so took in high school. it didn't matter. getting wrapped up with others' handicaps or lack thereof would be completely silly, and it would do me no good towards doing well on my upcoming chemistry test. i focused on the positive, didn't worry about the stuff i couldn't control, and i did everything i could to help me reach my dreams via the pursuit of education.
so what's my point? my point is that our seeming handicaps are only handicaps if we let them be. i assert that our biggest handicaps are merely our self-imposed ones, ones that are merely the consequence of our lack of pro-activity towards actualizing what we want. it's way too easy to not do something. it's the default to not act. and it's this lack of actions, proactive measures, planning, and exploring that creates handicaps.
if we choose to be a victim to something, then sure, we will be, but that doesn't have to be the case. even in situations where it seems like something is physically impossible or out of our control, it doesn't have to be. for example, have you ever seen paralympians compete at the olympics? people who are physically "disabled" can run, swim, and outperform non-disabled humans beyond belief. what then is their handicap? in what way are they handicapped? it takes them longer to get dressed? enjoying a stroll through town is slightly more tedious? but what grand effect does that really amount to? not much at all. not only are they able to experience the full spectrum of worldly experiences, but they are able to exercise their so-called disabled limbs in a way to reach elevated states of experiences and elation far beyond what the average non-paralyzed humans will ever experience. imagine how good it feels for them to sprint, train for thousands of hours, compete, and win. a non-paralyzed couch potato will never know those feelings.
clearly it's not what you have, but what you choose to do with it. clearly there are always other routes, directions, and means to allow one to experience and reach whatever he wants.
in the grand scheme of things, my so-called handicap is nothing. sure, as i mentioned, it limits some social interactions and forces me to seek alternatives at times, such as positioning myself to the left to whomever i'm talking. the constant ringing is really annoying at times, and my balance system is not yet 100%. but that's it. if i think about the happiest moments or eras of my life, needing dual hearing was completely unnecessary for those moments to ensue. i still have every other physical and mental faculty in good shape. i have vision, perfect hearing in my right ear, smell, taste, and touch. i am well-equipped, and there's no reason for me to let my left-ear deafness negatively affect me in any way. anything to the contrary would be nothing short of silly and a sad, unnecessary sacrifice of potential.
(c) health insurance:
this post is becoming long enough, and i don't want to get started on how horrible the whole insurance bureaucracy along the way has been. basically, this ear experience has shown me a glimpse as to how horribly inefficient, moronic, and destructive healthcare is in america.
in one example, my primary care doctor (PCP) wrote a referral for me to see an MIT ENT specialist. earliest appointment was 3 weeks away. so, PCP also wrote me a referral to see a sooner Harvard MEEI ENT specialist, which the health insurance is refusing to pay for. this is ridiculous because my situation was time sensitive -- could not wait 3 weeks to see the MIT person -- and even when i did see the MIT person 3 weeks later, they immediately said
they have no clue about my case and that i did the right thing by seeing an MEEI ENT specialist earlier. so, despite all of the doctors' requests and confirmation of my doing the right thing, the silly insurance group is saying, 'nah, you should have done things in this orderly fashion... even though it makes no sense and is against what the doctors recommended.' haha, so messed up.
(d) epilogue:
(d1) day-to-day:
basically, it's like wearing noise-cancelling headphones only on 1 ear, while having to hear the vuvuzelas of the world cup... just the soccer game never ends. sometimes the vuvuzelas are distractingly loud, other times you can tune them out for about 10 minutes.
how deaf is deaf?i've had two full-scope audiogram tests (aka hearing tests). my right is exceptionally good -- well above average. right ear can detect audio at 0 decibals, pretty much across the full, typical frequency range. my left ear can only begin to hear noises at 80-90 db, and when it does, it's distorted. this falls within the most severe category of hearing loss, called "profound" hearing loss. also, i'm not even testable on the word recognition test because when i finally do hear words at 90 db (instead of the normal 30 db volume), i don't hear words. instead, the words sound like forks scratching together. because the issues lie within the inner ear, or somewhere even before then, things like hearing aids and surgery cannot restore hearing.
ringing:so, in short, i haven't had hearing in my left ear since june 4. the most annoying part is not only being able to hear nothing out of the left ear, but the constant loud ringing/ocean noise that is generated within the left's inner ear. every once in a while, a bus or subway train or something will make a noise loud enough for my left ear to relay the fork-scratching-together sound. that's not too much fun. in fact, i can feel my eardrum moving before i can hear anything. it's very weird. i'm getting better at blocking out the constant ringing, though. doctors say it may never go away, but that some people can get used to it after 1-20 years. i've found that when i'm thinking hard about something, i'm completely unaware of it. haha, so maybe this will encourage me to think deeply more often.
balance:my balance is getting better, too, as i can do a quick walk and not really get jarred or dizzy. only turning the head in certain ways does it. well, sometimes i forget and i turn around quickly to look behind me. i almost fall over then, lol.
(d2) quick summary of everything that went down:
- june 3 - worked out hard in gym at night. ears got clogged, later ringing.
- june 4 @ 5am - woke up w/ "extreme vertigo"; vomited 30+ times. no hearing in left ear. went to harvard's MGH ER. stayed 36 hours.
doctor #1, diagnoses: probable labrynthitis, 100% chance of regaining hearing in a few days (wrong).
- june 8 - saw primary care doctor (PCP).
doctor #2, diagnoses: don't know, could be from weight lifting or viral. not too concerned about hearing. you should see an ENT specialist at MIT. (earliest appointment in 3 weeks).
- june 10 - MRI test. results good. no brain tumors.
- june 11 - started 10-day prescription of prednisone, to fight any possible viral damage.
- june 15 - went to Harvard's Mass. Eye and Ear Infirmary's ER (aka MEEI ER).
doctor #3, diagnoses: don't know, no way to tell. see a follow-up expert, Dr. Rauch, here in a few weeks. 0% chance of regaining hearing.
- june 20 - went to MEEI ENT doctor.
doctor #4, diagnosis: probably from weight lifting. 5-10% chance of regaining hearing?
- june 22 - went to the general MIT ENT.
doctor #5, diagnosis: no idea. less than 5% chance of regaining hearing
- june 25 - went to MEEI's expert Dr. Rauch. ear injection #1, high hopes of it doing any good.
doctor #6, diagnosis: maybe weight lifting, maybe viral, some chance that it's something more random. less than 5% chance of regaining hearing.
- june 29 - MEEI's Dr. Rauch. ear injection #2
- july 2 - MEEI's Dr. Rauch. ear injection #3
- july 6 - MEEI's Dr. Rauch. final ear injection #4
- july 7, my birthday - MEEI's Dr. Rauch. ear surgery, to patch any possible tears in my oval and round window. shouldn't have any effect on hearing.
in summary, the 2 most popular suspected causes are:
- (1) weight lifting:
if this is the cause, well, 1 or more of the following 3 things could have gone wrong:(1) perilymph fistula (aka, tear in the oval and/or round window); (2) tear in the membrane that has distinct sodium and potassium channels; (3) blod clot
the body tries to repair itself if any of these happen, but there are no guarantees. further, when damage is done to the hair cells from the corti, then there's no going back. permanent damage is done. only (1) perilymph fistula has a surgical option, and that option can't really bring back hearing. rather, it patches any possible tears to prevent further hair cell damage and balance issues. there's no way to know if any of these 3 things occurred. well, at best you can observe if (1) perilymph fistula occurred by doing exploratory surgery. the others are not observable by any tools.
- (2) viral infection:
if this is the cause, the canonical, default treatment is prednisone to kill the virus, keep alive any semi-dead corti hair cells, and to alleviate inflammation. it only helps roughly 20% of people, but it's been the default treatment since a semi-good paper was published in 1980. alternatively, some docs give a different type of corticosteroid directly through the ear drum. same purpose, roughly same efficacy rate, but without the possibly crazy side-effects of prednisone entering the bloodstream.
i had both treatments. first prednisone, then later 4 ear injections.
regardless of if it's from weight lifting or a virus, it's likely that the damage is irreversible. nonetheless, i opted for the most pro-active steps and have done everything possible: i did both the surgery and the injections, in hopes of preventing any further damage to hair cells.
the end. if you made it all the way through, congrats. if you are later interested in hearing any possible updates or talking w/ me about any of this, that's fine. i'm open to that. i just meant that this writing is the last publicly broadcasted spiel that i'll write about it, and that i won't bring attention to it or whine about it anymore.
