how did you learn about…

At work recently I was asked “what’s your background?” by two seemingly nice middle aged women in my field.  See, what I do, there isn’t training for.  Not formal training.  It’s half librarian, part IT, part rehab/OT, part artist, part sound tech….you get the picture.  So how I learned about it is not a short story.  It involves my age (young enough to get immersed in computers and tech and old enough to have learned it the hard way, before GUIs); my interests (audio and audio/visual editing and mixing); my prior formal education and training (linguistics and speech/language psychology); my past work experience (clerical work at hospitals, research assistant in a broke down speech lab with sometimes questionable equipment); my “fun” (DJ-ing and training at a local community radio station)….you get the picture.  But underlying it all is who I am.  I explore.  I like to learn about things and I am a little obsessive when I start down the path of researching something.  I don’t like puzzles, I mean I do them but I wouldn’t say I do them because I love them.  I do them because they trouble me and eat at me until I solve them, and I will spend hours, days, and even weeks trying to solve them.  Oh yes, and I have a disability.  Several if you want to be deconstructionist about it.  This means an “opportunity” to apply my problem and puzzle solving skills daily if not hourly for myself.

So for example: I am working on an economics book for a student who is blind.  I have to transform nearly EVERY figure in it into something that a person with very low vision and limited color perception can see.  This means BIG font, thick lines, and pattern or sharp contrast based distinctions instead of color distinctions.  See a bar graph with lovely shades of lavender, pink, and baby leaf green?  Yeah, I gotta make that into stripped, grey, and black.  My colleague who used to do this used to hand draw things out on paper.  That meant the student had to transform it into digital or use a big unwieldy document camera to zoom up on it.  I do it digitally.  I do this not to be fancy, and not really even to save the kid the document camera step although that is an added benefit.  I do it because I can’t draw and my hand writing is illegible even when I’m trying hard because I have poor pen grip and very shitty fine motor control.  Always have, but it’s getting worse.  To make the pattern fills without exhausting my poor hands and wrists, I researched how to create custom patterns in Adobe Photoshop and voila – pattern fill in three clicks.

And this translates into how I approach medicine and my health.  I research, I read, I cross reference, I scan and save results, I take pictures of rashes and my hands swelling up and put them in a dropbox folder where I can easily show them at a doctor’s office.  For this, I worry that I am seen as health-obsessive.  I wish I could explain all this, how I am and who I am.  This is a puzzle, and it’s the real biggie of all puzzles I don’t like but that eats at me until I solve it.  So it makes sense that it would get a very large amount of my somewhat obsessive attention, doesn’t it?

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8 Comments

  1. Wow. I have no idea how your work could ever see you as dispensable. How awful due to all that you do there (and I’m totally lost, but it sounds very techy and cool and yes, where would they find YOU!).

    This post makes so much sense to me. Aside from the tech skills, I’m the same and have photographed my skin issues, not that my former rheum cared. I have purpura all over this week after a couple months of normalcy. I also have an issues with puzzles. When I was in 3rd grade, I was tested for the gifted program and passed every portion except one that dealt with puzzles of some sort. They’re like my nemesis as I detest anything I can’t make sense of. There are oddities of my EDS that no one can explain (like all the minor VEDS symptoms) and I can’t find an answer online and no docs here who know about EDS, of course. If I had access to the docs in your area, I would be like you, and when I had the fibro misdiagnosis, I went all the way to LA to see a top rheum to try and solve the puzzle to no avail. I don’t understand the type of person that just takes a doc at their word with some weird Dx and calsl it a day and I get why you want to know if your ANS issues are really from EDS or not. I’d like to know if I have some weird genetic mutation that causes the VEDS symptoms, but for me, I have to wait for science to catch up I think. So, I get to look like a freak, as well! Purple People Eater with a road map of veins everywhere.

    Well, I sure hope things will be okay at work–it sounds like such a good fit for you! Hate that! Btw, I was in the radio program at my HS (I have a radio voice apparently, but was super freaked out by it!) and I worked briefly as a DJ in Mexico when I was 18. I got $20/day (8 or 10 hrs?) and the GM freaked out when he found out as the normal pay down there was $7/day. Oops. I was freaking starving, regardless. Maybe I’ll write on Mexico one day, but too many memories. Good stuff… And went on a tangent there!

    Reply
    • Gosh, maybe we are related! They do love to give puzzles to the gifted kids. Usually math puzzles and I was like “?!” LOL.

      $20/day at 18? Nice!

      I hate that you’re covered in purpura. 😦 That doesn’t sound good.

      Reply
  2. Haha to all that! I can’t recall what the puzzle part was exactly, but I do know that’s where I effed up! I’m really bad at idioms (sayings?), too. I know the word in Spanish, but not English! I had a weird test for SSDI with a shrink for who knows what reason and was asked what some idiom meant and I kept thinking and thinking and had no clue. Stones and glass houses. I always blame it on being 3rd generation American. Lol! I think I told the doc that I come from Yiddish speakers.

    Per the purpura and petechiae and veins and leprosy (just kidding, but they did have warning posters at the health dpt. about it in MX), I’ve thought of posting photos on my blog, but already know those will then show up everywhere online and my body will be the official Ugly EDS Look on Google Image, as not much is on there for the weird symptoms. Did you see that huge vein in my forehead in my photo w/MM? I think I look like I have a mustache in that photo, too! Great. Well I may, but I take care of it. Omg–that’s what I have everywhere (the veins, maybe the hair)! I have them in my neck too, but I cropped the photo. U-g-l-y. :/

    Reply
    • I’m always a little wary about putting up photos of me online too. I hadn’t thought about it your way specifically, but yeah.

      I did NOT notice a mustache. Now I’m gonna go look again. 🙂

      Reply
    • Nope. Just a shadow on your face. I think we have similar cheekbones and eyes – bone structure wise at least btw.

      Reply
      • Oh, phew! I think it’s a shadow from those crappy grooves in my face that I wish I could get fillers for. Hate it–especially on the few days I have my sclerals in and am like, “Holy Christ–what happened?” Lol–my dad’s done the fillers since they came out, plus all the Botox that I swear made his forehead fall onto his nose (all pre-face lift). Haha. Atrophied muscles aren’t really a good thing long term. Oh, the vanity gene.

        How odd that we have some features in common. It’s either your Italian blood or my suspicions about your mother. My face is really gaunt as I weigh 20 lbs less than I did before EDS, but I was a very skinny kid. My EDS grandpa had high cheekbones and that Marfanoid look, but for the most part I’m just a lighter version of my father (fascia, Dr. Evil), especially my eyes, but he has super kinky hair and mine’s a huge, curly mess, not that you can tell in that photo as my poof is on the top of my head. Just some food for thought. Go get the 23andMe test! 🙂

      • I have the same grooves. They are from smiling, I tell myself, and I try to keep positive about it. 🙂
        Here’s a distorted pic of me: https://badturns.wordpress.com/2010/09/26/feeling/

        I am thinking of doing the 23 and me thing. I noticed though that I couldn’t find EDS in their list of things they look for. Kinda weird.

  3. Ha! You’re too clever w/the computer. I can sort of see my eyes there! Odd. My grandmother’s eyes (adopted one) aren’t that different from my late grandfather’s–just blue. Regardless of the blur, I imagined you looking totally different–like heavy bangs, cat-shaped eyes, and glasses due to your vocab and Pretty in Pink persona. Lol–like that describes Molly Ringwald in any way. That always happens with me, which is why I only went on 1 blind date in my life. I have an oval face and l-o-n-g nose, but wasn’t sure from your pic. Thx for sharing, regardless… You look lovely! You know how everyone has someone famous they sort of look like? Nothing here at all.

    Oh, I wish I could be positive like you! I think losing so much weight made my face fall off my skull or something, like people who get gastric bypass and then look worse. The profile shot hid most of it. Well, I think it’s the EDS and it just hit at 36 or so. Effed up collagen can’t be good! You should see my mother and she had a face lift, too (Jewish ritual). Omg, please don’t let me look like that! I don’t look like her, but am afraid I have her skin now and my EDS grandpa was a saggy prune (sorry grandpa). Saving up my SSDI checks for a good face lift in LA and I’ll just live with the damn, EDS scars that are so bad and the fact that I can’t take narcotics and get horribly sick from generals. Haha.

    Btw, the reason EDS isn’t on there is b/c the only test that is accurate (over 95%) is the one for VEDS. No gene identified w/HEDS as you probably know and with my type (CEDS), the test is around 50% effective, so I passed on it as insurance won’t cover tests with such a low pick up and it could have hurt my Dx if I got a false negative. So, waiting for science to catch up. I think you should tell your mother there’s a chance she’s really Jewish (!!) and have her fork over the dough. 🙂

    Reply

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