a little bit of catch-up (because some of you aren’t on LiveJournal)

The basic facts:

  1. I have this genetic condition. So I’m 4’7″ yes you read that right FOUR FOOT SEVEN INCHES. I’m 46 yrs old as of this writing.
  2. I have given birth four times
  3. three of the four were necessary c-secs
  4. I also suffer from a fun form of Herpes in my spinal fluid. That would be not such a big deal except what they don’t mention is that sometimes it can progress to a near-fatal form which I actually did have once.

TONIGHT WE ATTEMPT TO DISCUSS FACT NUMBER ONE

Growing up with a genetic condition that makes you look like alien from the planet bizarro-dwarfland (my features are the opposite of formal Dwarfism: short trunk, normal limbs) means every time a medical person even gets near me I am subject to a barrage of questions all designed to satisfy their curiosity. Being as I inherited this condition from my father who is hale and hearty as we speak, it clearly poses little, if any, medical problems. Sure there’s practical problems galore (most of which have to do with just being super-short) but oddly enough, they never ask me about the practical problems of being a walking freakshow OR being super-short. Some people like to make jokes which I generally ignore or grit my teeth and bear. Not because I’m so super-sensitive about being small but because trust me, by the time I was 13 I’d heard it ALL. Being 46, now I’ve heard it all at least ten times.

But hey, why not share? First, the secular questions in order of popularity:

  1. “what’s WRONG with you?”
  2. “what HAPPENED to you?”
  3. “YOU’RE SHORT!”
  4. “are you a midget?”
  5. “wow, I really dig short women”

The creativity alone just knocks my socks off, right? Now you know why I have a FABULOUS eye-roll.

Now the medical questions:

  1. “have you ever been screened for scoliosis?”
  2. “turn around and touch your toes”
  3. “can you move your neck?”
  4. “does it hurt when you move?”
  5. “so have you ever heard of Klippel-Feil?”

Now, you may think all of those things are innocuous. But how innocuous would you feel if you were in an urgent-care clinic trying to get an x-ray of your HAND because you thought your wrist was broken and before the tech will set up the x-ray machine some PA starts barking at you to touch your toes and let him thump on your spine? Yeah, not so much. Especially when you’re in your 20s and have been getting spinal examinations since you were born. Not so innocuous. But people who have physical deformities develop a certain lassez-faire about being interrogated by medical personnel. We also develop a certain aloofness about strangers accosting us with dopey questions. At least strangers are trying, in a very inept and awkward way, to gain some understanding (well except for those Romeos who try to win my heart by telling me they love short women but we’ll get to that later) we can forgive that; everyone has curiosity and how DO you go about gaining understanding of something so incredibly outside of your world without sounding dopey? We understand. We may not always be in the mood to tolerate the lumbering fool who interrupts us when we’re out having dinner with friends to scream “OH MI GAHD YOU ARE SO ADORABLE!” but we do, under it all, understand. In stumbling forth and saying goofy things (that are often regretted right away, much to our amusement) strangers are attempting to humanize what seems so inhuman. They are trying to put a person behind that strange physical presence. That’s why we try to be patient and tolerant. That’s why the best question to start off with is “hi, what’s your name?” (at normal volume, please)

Medical personnel, yeah not so much. Yes, I know they are curious too, probably even more so, but their curiosity is not an attempt to humanize us. Their curiousness is quite the opposite: it is an attempt to label and categorize us which is to say, dehumanize us. Medical personnel will go out of their way to start grilling and interrogating in order that the outward physical form they are so curious about can be studied and dissected (mentally) and labelled properly and added to their store of objective knowledge.  So one develops a very different attitude when dealing with medical personnel than with strangers. I understand curiosity, both personal and professional and I most times will try and answer the questions barked at me. In many cases, I know the medical person has a job to do and they don’t and can’t know that I’ve answered those same damned questions at least twenty times a year every year since I could talk. It’s at best tiresome, but I can handle tiresome. So when it’s in the course of dealing with medical issues (which as you can see from the above facts, I’ve been picking up over the years much like I collect Star Wars paraphernalia – just a lot less fun) I will listen to and answer the basic questions. Sadly, most medical personnel are not satisfied with just the basic questions. Which would be fine in many cases.

However, when it comes to medical anomalies such as myself, they do not observe professional boundaries. The example with the urgent care PA bursting in on my x-ray is only one such instance. I could not begin to count the number of times I have been accosted by medical people who had absolutely nothing to do with me, my medical case or my current medical crisis and expected to achtung! to their orders no matter who they are because they are, after all MEDICAL PEOPLE and it is my job as a patient to answer every question they can think to toss at me. It does not matter if they happen to be walking down the same hall as me or if they happen to be a proctologist visiting his pal who specializes in eye-surgery; if I am there and they see me, they get to ask questions and order me around. It’s as if my mere existence in their visual field is sufficient permission.

…That’s the ones who at least have the wherewithal to interrogate me.

Others, simply make their assumptions and put them in my record without knowing anything about me or speaking two words to my face.

Another example: I was pregnant with my first child. I was nervous, as any expectant mother, but I was not particularly worried about my condition or being pregnant. My family physician who I had known from age 8 had assured me when I was a teenager “don’t worry, you have plenty of room to carry a baby like anyone else. The body makes room. You will be fine” and to doubly reassure me, she found some obscure medical texts of some women in Europe with the same condition who had given birth.

Well I was in a practice that primarily used midwives. On my third visit, the midwife told me I needed to meet with their supervising doctor, all perfectly normal, nothing to worry about everything was fine. But I wasn’t so sure. You see, the midwife had never, not once, asked me what my condition was. And that was damned odd. But not entirely unknown either. At that point (I was 24) I knew what that probably meant: she had already decided she knew what my condition was and wasn’t sharing her conclusion with little ole me. Considering I had never met this woman in my life before I got pregnant and I had only moved to that state two years prior, I figured it was highly unlikely she had any records or whatnot from my family physician. Especially considering they never asked me for releases.

So one visit, I was waiting for my midwife and I opened the exam door, grabbed my file from the folder on the wall and started reading it.

Wow. There were in total 15 pages written up by two different midwives about me. And none of it was true. It was all conjecture on their part. There was only one or two recordings of my visits, everything else was their supposition about my condition. None of which had they discussed with me. None of it. And mostly, it was all wrong too.

So when the midwife came back, I let her have it. I blasted her up and down and threatened to rip the file to bits. I threatened to walk out of their clinic. I threatened to have my baby in a hotel room. I threatened to call the Local news. I scared the holy hell out of her.

That story ended well…. eventually. There was the whole meeting of the supervising doctor, who wanted to schedule my c-section right then and there despite my protests. There was the firing of that doctor and our decision to hire a midwife of our own choosing. There was the hospital HR woman who begged me to fill out multiple complaint forms since that doctor had a reputation of being a horrible asshole. Then there was the visit we had after my NINE POUND son was born by NATURAL childbirth and watching that doctor and the old midwife grit their teeth as they smiled at us.

…yeah, some stories have good endings.

But most of my stories unfortunately end with me screaming at someone and walking out. OR me gritting my teeth and putting up with someone treating me like an amoeba in  petri dish because they had some medical knowledge or expertise I needed to utilize once they were done barking questions at me and thumping on my spine while I touched my toes. Such is the life of the physical freak with an “orphan” disorder. Yay. You get used to it. Kind of.

I will interject here one striking difference: Nurse. And I mean Registered nurses. Aside from the nurse-midwife I mentioned above (and I don’t know that she was an RN, I strongly suspect she was not) RNs have always been nothing but wonderful and respectful of me. Sometimes they ask me about my condition, sometimes they don’t. Sometimes its because they have to and sometimes its because they’re curious. They never pretend its one when its really the other and they are always so very human about asking. I love every RN I have ever dealt with. Really. I don’t know why, because I’ve had LPNs who weren’t so kind. I’ve had PAs I wanted to strangle. I’ve had basic techs who could not be respectful if you stuck an IV in them and pumped them full of oxycontin and phenergan. Some people are just rude and joyless. But every single RN I know of has been wonderful.

So now you know why I hate doctors and am very suspicious and wary of all medical personnel, except RNs. God bless RNs.

Don’t worry I’ll hit this subject again. Good night.

(from the vault) eleven years ago….

We got our first Christmas tree:

 

 

 

I’m picking up my violin today (my xmas present to ME), I have new comics, the horrible night job is over, everyone responded to my open post, and best of all WE GOT A XMAS TREE!!!

We have never had a xmas tree before.

Sometimes I feel out of place with my little family. Sometimes it seems like we are just a bunch of people inhabiting the same house. Sometimes I feel guilty because having to run a home by myself cuts out a lot of things I imagine this family could really benefit from. Sometimes I imagine that one day my boys will tell me about all the things they feel they missed out on by not having an “intact” family.

We’ve been through times when we didn’t have enough to eat, didn’t have proper health-care, didn’t have a real home… but the worst times were when we didn’t have anything that kept us together. Those were the times when I wondered if I was a selfish person for keeping my children with me. Sometimes I felt deep down that I was doing more harm than good by refusing to give up. So many times I could have handed them over to my ex’s parents who are rich and adoring and would give my boys everything they need and want. They would have gone to the best schools, had the best therapists, travelled around the world and possibly been better people.

Every time I thought that, though, two things would stop me cold: what it would do to them and what it would do to me.

My mother abandoned me when I was a baby. She never will make that up to me, no matter how well we get on now (and we don’t). I could never do that to my boys. My life is my boys, regardless of what I do for me and my pleasure. The boys gave me a purpose that has kept me alive and happy all these years. Nothing else I have ever done will give me the confidence and pride I get from having these guys around. I could never be grateful enough for their gifts to me: joy, love and learning. I am humble before their triumphs and I am moved by their lessons. I cannot even imagine them not in my life.

Sometimes, though, I wonder if we will ever be able to stop struggling and just enjoy each other like “real” families do.

Well, yesterday we did just that.

We went to a place by my one of my sons school and looked around. All the trees looked the same but for size. My boys picked a likely looking suspect that was sitting inobtrusively with no price-tag. I think the guy discounted the price for us because the tree wasn’t marked but it didn’t look any smaller or more banged-up than the other trees but it was the cheapest one (hmmm). The man bagged it (nylon netting to keep it purty) and even put it on the car for me. We had bought lights, mini-balls in metallic colors, candy canes and red ribbon to decorate. The boys fell to putting everything on like old pros and I placed the ribbons, putting bows wherever the guys told me to put them.

The result is lopsided, sparse and totally enchanting to me.

Although there is some friction due to my admonition that the candy canes are NOT to be eaten, the boys are thrilled. I took way too many pictures of them and the tree, everyone grinning like idiots and waving their hands toward it like an infommercial. They ran back to the tree over and over again to touch the branches and count the candy canes. They solemnly recited all the colors of the mini-balls. They checked my bows to make sure they were “just right”. It hard for us to believe that this plain little piece of soon-to-be-dead foilage is really ours.

They each made a star, all three of which will be glued together and put on the top once the glue is dry. It is nothing special, but it is our first xmas that has a tree. This tree is the prettiest thing in our house and we made it that way. It is beautiful to us. I don’t care about the rest of this silly madness; this year is more real to me than any other xmas because this year we did something together that we never did before.

Sometimes, cliches can come true.

my life leads to a conference

Background, first.

I am a student at my local community college. I am in a program to get a bachelor’s degree in American Sign Language Interpreting. The reason I am in this program is a little odd and my history of college attendance doesn’t at all match up with what I’m doing now. So this story, which begins way back in 1990, weaves through several pregnancies, two marriages and four different colleges before it gets to the end of the beginning.

I began college in 1989 when I was pregnant with my first child. I assumed giving birth was going to necessitate a break from schooling so I decided to take the semester off before I went back to school. Well that turned out to be a decision I regretted because in less than two days after giving birth, I was ready to get back to a solid daily schedule and within two weeks I realized I missed school. But I did enjoy being with my son every day. I just knew that taking one or two classes wouldn’t have interfered with being a mother and being a mother certainly wouldn’t have interfered with taking one or two classes. Mind you, I was a freshman. My classes consisted of core curriculum which was frankly beneath my intellectual capabilities. In less than a semester I learned why community college was snickered at by other university students . The depth of ignorance and lack of knowledge amongst my “peers” was astounding to me. Granted, I went to excellent private schools (on scholarship) and I was a voracious reader (especially of non-fiction) yet the dearth of stimulation within my first year of college was almost depressing.

When I enrolled, I didn’t have any clue what I wanted to do. I assumed I’d do a liberal arts major – probably sociology since I read a LOT of that kind of thing – or perhaps I’d look into engineering since I loved science so much (but not in a research kind of way). After one semester, I was seized by the urge to look into film and photography. Mind you, I’d never snapped a picture before and the only exposure I’d had to film was in junior high when we all did a two minute animation short in art class. So I convinced my parents to buy me a really nice used Nikon SLR and I  went to my counselor and made photography/film my first major.

I loved all of it. However, it didn’t take more than one semester to figure out that once I had learned the basic mechanics of film-making/photography, I didn’t need to get a degree to do it. So after two semesters, I changed my major. To general engineering. 

In order to major in engineering (or any science) you have to have a core of science basics. So I signed up for my science basics. I was told if I wanted to go into physics, I’d need more math. A lot of higher math. So I signed up for pre-calculus classes to ready myself for that higher math. Most of my liberal arts friends had done their requisite 4 credit hours of math and were happy to be done. But I was determined. I loved physics as much as my father did (he has his engineering degree in applied physics) and physics uses a lot of “heavy” math.  So I was going to put my nose to the grindstone and learn all that math. It was hella hard and there were times I really questioned whether I could make it but I finally made into the calculus class that was part of the physics requirements.

It was near the end of my first calculus class when I had “the moment”. That point in time when everything slows down, your brain hones in on what you’re trying to grasp and suddenly the gates of understanding open  up and knowledge just pours right on in, clicking into all the right places. It’s a mentally orgasmic experience. What gave me that moment? Proving the second fundamental theorem of calculus: Riemann sums. Wow. I still get shivers remembering it. My professor, who was staying after class to help me get through this very crucial part of the course, saw my face and he must have known what was happening. He smiled a little bit and almost shyly said “so, you see it?” and I knew what he meant and I whispered “yeah, I see it, I really do”

Walking home, I knew what I was doing the next day: I was changing my major to math.

So, jump-forward in time and I’m pregnant again. My attendance at school had been spotty – semester on, semester off – because my husband and I were trading working. He’d work for a while and I could go to school then I’d work for a while and he’d stay at home with the baby. Well I was in class while pregnant with my second and I decided I’d just take a week off. Told my teachers, they were fine with it, willing to give me make-up work and all that. At that time I was trying to play “catch up” on my pre-reqs still and not taking anything “fun”. Well my second son was born via c-section. I wasn’t going back to classes in week’s time. I had to withdraw formally for a while.

Fast-forward again and we’ve moved down South and I’m pregnant with our third child and I know in my bones our marriage is on its last legs. I wasn’t sure how I was going to manage things but I knew we were going to be split before that baby was ready for school. I enrolled in the main city community college and got my credits transferred. Some, of course, wouldn’t transfer. SO I was taking some of the same pre-reqs I had taken up North. I was still majoring in Math but starting to wonder if perhaps I should pick something more… marketable. I was eyeing statistics but thinking perhaps actuarial.

Then the marriage fell completely apart and I told my husband to get out. I had stopped college yet again, because he had stopped working in favor of staying at home getting drunk (when he WAS home at all) so I had started working for temp agencies. I realized I surely didn’t need his money, since he wasn’t making any and I definitely didn’t love him anymore so what were we doing? There was a lot I wanted to do with my life but taking care of a drunk adult was not one of those things. So I basically told him to pack up and leave.  I wasn’t sure how I’d make things work but my parents had offered me one of their rental houses and I knew people who needed roommate situations.

So after many fits and starts, I decided to go back to school again. This time, I was going to be pragmatic about it. I enrolled in a nationally-known chain voc-tech school famous for its geek-appeal. I enrolled as a computer programmer since I remembered enjoying that in high school. I was able to get in the accelerated program – classes were only on the weekends (so I could keep my job) or evenings but they were ALL DAY on the weekends. and they were accelerated so most of the work I’d be doing was on my own. It was very intense but I did enjoy it.

But then the ex started ditching his responsibility of taking the kids on the weekends. I started having to miss class. it didn’t take long (about a year) til I had to drop the whole thing. $20K in debt and nothing but 30 credit hours to show for it.

Fast forward again to almost a year ago. My best friend at the time was taking classes at the local state community college here. She for whatever reason decided to take a class in American Sign Language. I think she did it because I am vaguely familiar with Sign Language and I had a couple of Deaf friends. She felt somewhat “behind” when we all hung out because she didn’t know ANY signing. Well, one class and she was hooked. Decided she was going to get into the interpreters program. Next thing you know, she’s convinced ME to take some classes in Sign Language. Next thing you know, I’m taking the entrance exams for the Interpreter’s program and I get accepted. I wasn’t even sure what I was going to do with an interpreter’s degree. Being an interpreter sounded okay to me and I surely enjoyed learning ASL (like I had enjoyed learning Spanish, French, Latin and Italian when I was in high school) but it wasn’t something I had ever considered to be a life goal for myself. I started looking into the other career applications of being certified as an interpreter. Seemed like education was a good start.

Now, mind you, I’ve never been terrifically attracted to the idea of being  a teacher. Many people close to me have been surprised to find that out but I maintain I am not really teacher material. I am tutor material. I have enjoyed teaching adults in a one-on-one environment or even in intensive five-to-one lectures, but the idea of a room full of children for 6-8hrs makes my stomach churn. no thanks.

But special education has held some interest for me. Because my life has been steeped in it since i was 13, I probably learned more about special education by the time I was 15 (and running away from home) than most people learn in a lifetime. Of course, the learning certainly didn’t end there, as most of you know. Having a brother with multiple disabilities (including deafness) may have begun me on the trail but having my own children diagnosed with Autism Spectrum disorder kept me on the trail with an insatiable curiosity  The more I learned about my sons’ disabilities and differences, the more interested I became. And I don’t mean that as just a mother, I mean that as a life-student. Many subjects involving humans directly interest  me but studying how the mind develops? how development all over works? whether from a historical point of view (eg anthropology) or a scientific point of view (eg evolutionary psychology) it was ALL fascinating to me. I still had a love of math (I still miss it) but special education just burns me with curiosity. Quite possibly because so much of it IS new and mysterious to us.

So in answer to the  constant question of “what are you going to do? Be an interpreter?”  I started saying “I dunno, I’ll probably go into Deaf Education.”

It wasn’t really THE answer, it was just AN answer.

As a good friend of mine said “the problem is I love EVERYTHING. I want to do it ALL” – which is pretty much true for me too. (with the exception of chemistry and basic history, I learned about those things under much protest)

So we fast-forward again to a night when I am meeting up with some fellow students from my Deaf History/Culture class. We have a project together and need to start hammering out the details of what we’re going to do.

Now, understand, I already feel somewhat self-conscious and alienated in classes because mostly I’m surrounded by people much younger than myself. While the vast majority of my friends are younger than me, it’s not by much and we all share the same geek-loves. When I reference a movie or song, most of my friends know what I’m talking about. Being socially insulated like that is nice but it does make one terribly self-aware of how sheltered you have been once you venture out of your circle of “normality”. I was also painfully aware of how slowly I was learning ASL. I know there were some students who were worse than me but I also knew there were plenty of student who were far better than I was. It bothered me some and I tried not to get down about it but there were times when I really wondered what I was doing… after all I wasn’t “in love” with the idea of being an interpreter and I didn’t really know what I was doing and here I was trying to slog through something that maybe I just didn’t have an aptitude for… that bothered me too since…

well okay look, when I was in High school, I studied Spanish as my language requirement but came to realize I loved learning language and I was good at it. I had an aptitude for it. It came easily and it was fun. I had dreams of being multi-lingual and all of my hs Spanish teachers thought so too. One of them began teaching me French, Latin and a little bit of Persian too. I loved it. We only covered a little bit of each but I discovered that Italian wasn’t hard to muddle through either!

Yeah all that was great until my hearing “issue” started interfering.

Up until I was about 14 or 15, I never gave much thought to my hearing issue. I’d had hearing checks and aside from some quirkiness, I passed. Tonally, and volume wise (which is what they test) I could hear just fine. My constant misunderstanding people was always believed to be part of my silly spontaneous personality.Everyone just accepted it as part of me; I was considered to be ditzy and child-like. (I can hear my friends laughing from here) Well that wasn’t what it really was. It was my hearing problem that I didn’t realize I had.

Now, when I was learning Spanish in high school,  it wasn’t much of an issue at first because most of what you do receptively, when learning a foreign language, is listen on headphones to someone speaking the most basic standard form of the language possible.

It was when I tried to decipher Spanish in a “normal” conversation that things became arduous and embarrassingly difficult. People would have to repeat the same simplistic sentence several times while I tried desperately to “hear” what they had said. If they wrote their words down on paper, bang, no problem, I knew it all but the second words left their lips in a “normal” environment I was likely to be left in the dust. It made me look far less competent in the language than I really was. It seemed to baffle people as well because I could SPEAK the language beautifully. I was often praised by natives for my exceptionally accurate accent. Part what I loved about Spanish (and the other romance languages) was its predictability in sound. That was why my difficulty in hearing it spoken in natural settings was so peculiar. I certainly understood how Spanish sounded. Testing showed I knew my vocabulary and grammar very well. I definitely knew how it was supposed to be spoken. So why did I fall apart when it was spoken to me? 

Discovering I had the same difficulty with the other languages (at one point I tried to teach myself German and Japanese and did surprisingly well until I tried to hear it spoken) made me realize that this was not a language problem for me. Because when I truly thought about it, I knew I had had the same issues dealing in my native language of English. Clearly, there was a “hearing” problem.

Which meant I could never truly be a multi-lingual interpreter.

I abandoned learning other languages but kept up with my Spanish as it was handy to know even if functionally I was painfully slow with using it. I’d say learning foreign languages was probably the first academic dream I had had and giving it up was somewhat sad but I was young and there were many things I could learn that didn’t require perfect hearing.

So here I was, in a meeting with two other students from my Deaf History/Culture class in a restaurant. A nice noisy restaurant. With lots of ambient crashing sounds to obscure most of what I hear. But its fine because we’re not talking, we’re signing. Well I’m trying to sign anyway. By the time we got to the restaurant, I was already demoralized. We had previously been in a coffeeshop and one of my classmates had asked me to explain something to her. She’s Deaf so we have to sign yet the explanation I was trying to give was far more esoteric and unformed than I was capable of signing. So at one point, she used VRS (video relay service) as an interpreter (which is actually against the rules but we fudged it for a few minutes) because she simply could not understand what I was trying to say. All using VRS did was highlight the fact that my signing is woefully inadequate. So by the time we were in the restaurant with the other student I already felt like a dumbass.

Then the Deaf student turns to us both and asks each of us about our prior schooling. The other student’s story is fairly straightforward and simple. Mine is not. I start telling her what I’ve told you, in bullet-point style. Her eyes got bigger and bigger as I whipped through my geeky game of musical majors. “wait,” she signs “if you’re such a geek, and you ARE such a geek, then what in the world are you doing in the program? Why aren’t you studying calculus five or science or whatever”

I was a bit stunned. I mean I’ve been trying to really pinpoint the answer to that question myself and not really coming up with an exact answer. Here she was accosting me with a blunt manner that made me feel defensive. I felt like she was saying I had to justify learning ASL at all.

“I don’t know exactly” I signed, “I’m not sure but why not?”

“okay, let me ask you something” she signed ” Do you spend any time with Deaf people at all?”

“yeah, I do, I go to events but I also have a few Deaf friends one of whom I hang out with regularly”

She looked like she didn’t believe me. Those of you who know me know that is a button of mine… not being believed. But I tried to just drink it in and wait for whatever point she was going to make. I figured she had something constructive to tell me. “who is this friend?”  I told her my friends name. SHe didn’t know her (in the Deaf community its not unusual for Deaf people to know each other at least through two degrees of separation. Its a tight community) she started quizzing me on my friends ASL ability. Now I’m not about to get into a critique of my Deaf friends signing ability. That just seemed heinous to me.

“The point is,” the student signed ” is that you’re not very good. I mean sometimes I can understand you but other times you just don’t make any sense. Your signing is way behind. So if you’re so brilliant at math and science and this is so hard for you, why are you here? If you don’t LOVE the idea of being an interpreter, if you aren’t EXCITED by this, then what are you doing in the program?”

“hey look,” I interrupted, ” how old are you?”

“23” she signed

“And you?” I asked the other student

“25” he said

“okay look, I’m 46. I’m twice your age. It is harder for my brain to learn than it is for yours-”

“bullshit” she signed interrupting me forcefully

“excuse me?”

“bullshit” she signed again ” you’re making excuses. its sounds like you’re just avoiding responsibility”

“now wait a minute, I didn’t say it was IMPOSSIBLE. I said it was harder and it is-”

“BULLSHIT”

“no it IS, okay? its science. But look I’m HERE and I’m DOING IT. So obviously I’m not making excuses. I’m telling you reality.”

She was still shaking her head. I looked at the other student, he just shrugged his shoulders in agreement with her.

“okay, well I’m sorry you think it’s that simple. You’ll find out the hard way when you get older I guess.”

Then I got up and found our waitress. I told her I needed my food to go. Then I paid and I said good bye and I left.

That conversation haunted me. I cried out of frustration on the way home. I approached one of my teachers after class. I asked my Deaf friends (some of whom had watched a video or two of mine) and I talked to my hearing friends who have also watched my videos. Everyone tried to make me feel better and told me not to worry about it. I actually thought “maybe she’s right and I don’t belong here. I should just quit and do what I know i’m good at. Go back to math and hide behind numbers for the rest of my life” But it bothered me even more that I was thinking like that. That I was taking the criticism so hard. It was strange because it didn’t actually hurt my feelings, it undercut my confidence and made me question my ability to do what I love most: learn.

But I would not allow myself to give up from one criticism. I once was criticized so harshly during sailing lessons that I was depressed for days afterwards. I wondered if I should ever bother to get on a boat again. Whether I was “worthy” of sailing anymore. But eventually, the lure of doing what I loved was more powerful than one person’s undermining my sense of self. I’m just a little bit stronger than that. So I persevered. Both times. As always.

But it still nagged at me: what was I doing in this program? I couldn’t shake the feeling that I did have a reason for being there. That I hadn’t just stumbled into it like it appeared. Sure, I had Deaf friends and I knew some SEE before the classes but I didn’t go through three semesters of pre-lim ASL classes with a 3.7 GPA then pass my GEARS test and entrance exams just for shi-gizzles.

I knew I had a purpose, a goal… I just didn’t know what it was. Before I had that unsettling conversation with that student, I had kind of assumed the goal would come to me, over time, as I learned more and more about the world of ASL interpreting. My loose aim was to be certified in order to go into the field of education. I figured it couldn’t hurt to have that kind of extra knowledge under my belt and the sad fact is that many deaf children have  disabilities that qualify them for special ed. Plus had some murky ideas about teaching ASL in special ed classes regardless of whether the students were deaf or not.

So… last month, I went to a conference for interpreters in my region. No, I’m not one but us students were welcome to the conference. It was going to be a good chance to see people in the field discussing what it was like to be in the field in different capacities. The days were divided up into three main workshop times. Legal, entertainment, religious  and educational interpreting were all going to be covered over the course of three days. We were encouraged to go to all of them briefly “float around” as one of the organizers said. I planned to peek in on legal interpreting (I love legalese) and check out educational interpreting. Someone told me the legal workshop was ALL ASL with no interpreting or captioning. Well I wasn’t sure I was ready for that since I don’t know much legal vocab. I imagined the workshop really being geared towards interpreters who already work in legal who are looking to be better. SO I decided I’d start with the educational workshop then maybe move around. I wasn’t much interested in entertainment interpreting (probably because of my background in theater and musci – if I’m going to be involved in entertainment, its not going to be standing on the side!) and lord knows I had zero interest in religious interpreting (I’m amazed at how many get into the program specifically for religious interpreting) so legal and educational was pretty much all i was going to get anyway. I was a little bummed out – I had hoped there would be more than just those four represented.

So I started out in the room for educational interpreting.

Dear lord.

Within five minutes I knew I wasn’t going to any other workshop.

Within fifteen minutes I taking notes of everything

By the break I was walking around the room, talking with educational interpreters about their jobs as if I’d known them all their lives. I felt energized and excited. I was learning! Not just parceling out bits and pieces of information and struggling to put them together but zipping along taking everything that was thrown and out and stashing everything away into “the big picture”

It was heady stuff.

Then, at the end of the workshop, I was talking to another student from one of my classes about some of what we had gone over in the workshop. She asked me about some terminology that had been used. Initializations I’d been hearing and using for the last twenty years, since before my children had entered the larger world of education. She goggled at me as I explained the terms and quickly segued into the importance of certain specific regulations then to some of the changes in laws during the last few years as pertains to the ADA and how one should be aware of certain aspects of different types of regulatory categories and what they entail and how exciting it was to learn all this but more importantly how this kind of knowledge needed to be more widespread and you know when I got out of the program and started on my masters in education perhaps this was the angle I really needed to focus on because from everything I’d learned in my years of being the parent of a special needs kids-

“wow,” she interrupted, eyes wide with amazement, “you really know what direction you’re going in”

***** pause *****

*****blink*****

*****breathe*****

I looked right at her and I could feel the wonder she had, as if she wished that she too knew exactly what direction she was going in, I knew that look because up until that very moment, I’d seen that look on my own face every time I asked myself what I was doing in this program.

Suddenly, I saw it all.. my future the way I want it to be.

I want to get a masters in special education, yes, but I want to go into administration. I want to be one of the people who has influence enough to make special education change and progress. I wouldn’t mind teaching and I’ll probably do it at first but what I want to do is be …an organizer. Because ever since I was a 13 year old girl listening to my mother cry after she’d been told her second son would never hear her say “I love you” never read a book to her, never look her in the eyes and never even sign “please” I’ve been fighting against this system that has tried so hard to ignore and shun every single child who doesn’t fit into the mold. And though I understand how that would work to keep the health of a system intact, our children aren’t here to support the system, the system is supposed to support our children. I’ve been fighting the education system since I first sat in an SST meeting and told the whole staff of a school off for trying pass the buck on my son’s education. I’ve been fighting and fighting the system sometimes as an ally, sometimes as an advocate, but mostly as a mother.

I don’t want to fight anymore. Not like this. I want to fight and know that I can win something. Because I don’t want to keep fighting against the system for the sake of one child, I want to start pushing within the system for the sake of all children.

I saw myself in that instant graduating, enrolling in grad school, working as an educational interpreter in the meantime, being able to see firsthand how things work (and how they don’t work)  I saw myself getting positions of influence in public education and pushing people to start noticing and stop ignoring the “special” kids. I saw myself doing this with joy and verve because I knew I was finally where my whole life has been leading me. This was the vision, the goal I’d had all along, I just didn’t know, couldn’t see it until now.

Dream big, baby, right?

yeah,” I said to her, ” I do know what direction I’m going in

and with that knowledge, I stumbled to my hotel room  and spent the next few days battling tears every time I remembered that conversation.

I can’t say my whole life changed.

My whole understanding of my life changed.

I’m sorry I’m so absent…

School’s kicking my ass.

Should be getting some breathing room the end of next week. I have a few plans about what I’ll be writing so expect a minor explosion of *ME* at that time. I had an amazing “moment” as well as some very sad ones too. Its all coming down the pike, I promise, come back in about two weeks!

 

In the meantime, here’s something to keep you busy:

 

https://docs.google.com/document/d/1Fyl_MrAOR9BoLedhCTrHar0uAi8_UB8pEZJWKxHeHu0/edit

Mountain Folk

first, look at this:  http://readersupportednews.org/opinion2/279-82/13053-a-world-of-hillbilly-heroin

I’ll tell you my story:

When I stayed at the Salvation Army as a young runaway, there was a wild girl who stayed there too who LOVED drugs. Now mind you, I was no innocent; I’d done a few inebrients myself. A little acid, a little speed. Tried marijuana but wasn’t my thing (it makes me terribly paranoid and upset and nauseated) This girl, though, she was one of those types you figure will either be dead or paralyzed within the next decade. Or she’ll “find jesus” or something like that. You knwo what I’m talking about… if you don’t, let me assure people like that really do exist. She was once observe at a party hiding in the bathroom plunging a huge hypodermic into her thigh. WHen asked what the substance was she injected she replied “speed.. I think”
Capiche?

So one night, a male friend of mine drove up to the youth lodge to take us all out. All mean me and her. He had a nice car. Well she decided she needed to get some specific type of drug. I can’t even remember what it was, some pharmaceutical or another. I didn’t really truck much with pill-popping because it just seemed too risky to get the good stuff. Every now and then someone would hand me a pill and say “its black beauties!” or “it Praaludes!” and I’d pop it (I liked uppers) but if I didn’t know the pill I wasn’t popping it. I didn’t know a lot of pills so i declined most. And I was young enough, and cute enough that I pretty much never paid for my own drugs when I did them. People were always handing them to me. I was barely 4 feet tall and I think people thought it was funny to give the “little one” wacky stuff.

Anyway, I’ll call her Liza cuz frankly I can’t remember her name and she probably gave us a fake one anyway. Liza insisted on taking us all on a crazy drive out to get drugs from some distant relative of hers. We drove forever. We were in the STICKS. As in the frickin mountains upon mountains that blot out all city lights and not in a good way. Like you could hear “Deliverence” playin in the wind behind the mountain.
We drove through the woods for about ten minutes once we left the last dirt road behind and we finally came upon what I thought was a deadfall blocking the way. But she insisted we get out so I rolled up my sleeves thinking we’re going to have to clear the debris to continue on. I thought, wow we are so fucking far out that we have to pick up goddamn rotten trees to get to our destination.
Haha.
It was actually her relative’s abode. There was actually an “inside” to this place. There was also uh.. furniature? I guess you could call it? It was hard to tell.

Now, I’ve been scared a few times in my life but never quite so bizarrely as walking through that pile of rotting wood with chickens everywhere. I could not wrap my mind around the idea that someone actually lived there, called this place “home”. Truth be told, it was impossible to really think of this place as anything even resembling a “home” -even to the chickens- what with the “walls” not actually shutting out the elements and the “roof” not actually sheltering us from anything above, including an occasional hawk that dove down trying to catch one of the lazy chickens. There was, of course, a nice fat layer of trash from bygone days and I actually found myself slightly interested when i realized some “junk mail” was from the forties but I lost all positive feelings whatsoever when she walked around calling her relative’s name and got no answer. I had a brief feeling of impending doom when it became clear that no one was going to give a “normal” answer of any type and it occured to me that said relative might, in fact, not be pleased as punch to see her there. Especially with a couple of strangers.

I grew up in the south and I know rednecks but I have to be honest when I say I’d had very little experience with… what we called “mountain people” and of course everything I’d heard was pretty damned bad. You didn’t mess with Mountain people. Basically my family made it clear that you pretty much didn’t have anything to DO with mountain people. If they showed up you humored them and waited for them to be on their way. Under no circumstances make fun of them and talk very simply to them, lest they take offense. They were known to be violent with a hair-trigger. The thing was that my family feared Mountain people, yes, but we felt a certain kind of patronizing kinship with them too. My father’s people were a long line of merchants, So we were never “down there” with mountain folk, but we certainly knew about them. Except me, of course, and i was terrified of them.

While I was busy figuring out that I was probably in the worst possible place I had ever been in my short life and how in hell was my family going to handle the notion that not only did I get killed but I was killed by a mountain person after all their warnings and sheltering, Liza was rifling through one of her relative’s medicine cabinets. He had six afixed to the walls. The reason she had decided to violate his uh, personal abode, was because her relative had apparently passed out on the floor and was lying in apuddle of his own refuse. I noticed the staining before I noticed the smell. I asked her if maybe we should check on him.
“him?” she sniffed, “no, he’ll wake up whenever”
Liza didn’t find whatever in blazes she was looking for and she seemed pretty convinced that cousin whosis had scads and scads of her drug-of-choice (who knew Mountain people could be so darned picky about their inebrients?) she just needed to find the right medicine cabinet. I did think it was odd that in a place so full of… chaos, her great-nephew had adhered to some semblence of order by using actual medicine cabinets to house his pill bottles. Maybe it made them easier to find than letting them lie around in chicken shit.
In any case, she was starting to get kind of pissy about it, making noise and all which alarmed me enough to realize exaclty how scared I really was – as was our driver, Tom who at that moment said “really, Liza, can’t we just uh, come back later?”
She looked at him like he’d lost his mind “and spend another four hours driving?!” well okay I guess that did seem a little nuts if you assumed he was telling the truth and was actually willing to come back.

At that point I decided I needed a cigarette and told her I’d be outside. As I turned to go (and began wondering if i’d make it outside as frankly every angle I turned the place looked like the same ungodly jumble of old papers, sections of sawed-off furntiature, chicken remnants and I-don’t-know-what-that-is-and-I-don’t-want-to…when suddenly someone appeared out of.. the back? of somewhere?
WITH A SHOTGUN IN HIS HANDS

I will not bother to accurately describe this..man? It is sufficient that you imagine the basic Mountain person stereotype. Battered brimmed hat, huge white beard, gaping toothless maw, grey clothes of an indeterminate nature… you get the idea.

Liza turned and said “Cousin Drew?!”
Drew opened his maw a little wider and said the words I was hoping he would not say “Who are you?!”
Liza opened her arms and walked towards him “DREW! ITS ME!!”
“damn, Liza, tell him your fucking name” I thought, “He probably doesn’t remember!”
“Liza??” he finally said
then he dropped the gun and they hugged.

That was enough for me. Nobody was getting shot. I was going outside. I waited until she was ready to go. Tom came out with her, pale as a sheet.
“are you okay? what happened?”
“nothing… he wanted to share his moonshine with me”
“did you?”
“are you NUTS? Don’t you know mountain shine can kill you if you aren’t used to it?!”
“oh okay so was he offended?”
“no, thank god”
“great, let’s go”
“yeah” said Tom

So we left.

there’s always a good story when we play

Okay so, monkey and leopard got into the Mach five to go to the parade. Spotted dog, kangaroo and bobble-headed dog got into Aurora’s carriage which was being pulled by the Mach Five. It was leopard’s birthday. But the meanie head concrete mixer truck and the pickup truck said it was concrete mixers birthday too so they blocked the parade route to the party with baby dolls. Everyone was sad. but Monkey blew the babies out of the way. Everyone went to the parade. Now we sing the “make pies” song.