A7 elaborated: My Imperfect Story, #SOSChat # Recovery etc

I love twitter chats. But sometimes thereʻs a lot more than you can say in a tweet. Like for something like this more or less.

I donʻt know where to start. I get both the “have you always been blind”, “how do you deal with your circadian rhythms” and “why didnʻt you say hi?” and “how do you move in the city?” end of the questions. I can read some text sometimes, and I can run – in fact running is the calming zen thing for me. And I can do pretty much everything I enjoy in life. I know where my limitations are. This is where the difference is: I know why I shouldnʻt be driving – so I donʻt feel a loss of independence by the lack of operating a motor vehicle.

Yet I forget the culture I live inside of.

USA is very sight-obsessed. It loves big TVs, pop culture, TV shows, sports, actors and actresses, TV doctors, and driving private cars. It also has good intentions in making life equally accessible for people who have any [specified set of] disabilities. “Reasonable accommodations” to make life easier. And on the same time letʻs pretend that everyone in the whole country lives by the white American values, is monolingual etc. So everyone thinks the same, behaves the same – and we make a great point of pointing out how we donʻt discriminate anyone in this country based on their race, ethnic origin, religion (unless Muslim), sexual orientation (*cough*) and so on.

And they assume everyoneʻs communications are the same. Speak in Standard English (i.e. how White Americans sound in TV and movies), while maintaining eye contact etc.

Now this is where itʻs failed a number of times for me. Letʻs look at a few horror scenarios.

  1. Iʻm pointed with a gun. I black out
  2. Iʻm injected with drugs against my consent, in a hospital. I black out, lose my consciousness for four days. When I wake up I am not wearing my underwear. WTF happened?
  3. I am forced on medication that causes a really bad Charles Bonnet effect. Google it up – my eyesight really sucks balls that much. I have never communicated that to the doctor
  4. Iʻʻm forced to have a video chat with a doctor that has a strong Indian accent, so I assume sheʻs in Bangalore… wtf. Where in the communication chain does it get lost English is my third language? Oh yea, in this chain, way before point 1.
  5. I am apparently expected to disclose emotional statuses to people I have nothing in common with. F U. I donʻt disclose emotional statuses – also I donʻt like feeling like Iʻm locked inside a building

Okay, thatʻs enough stress.

I could also go on about a few different shrinks. One that Iʻve never seen (seriously, people? Do I just have to ask people what they look like? I donʻt care what anyone looks like), that wore an expensive, feminine profume on her last day of work; her replacement that wore prescription eyeglasses and did not understand that outdoors weather could possibly have an effect on peopleʻs moods, and the winner: an old Jewish harp that asks a customer who always uses headphones AND a screenreader to use a computer, tablet, and a phone… (insert dramatic music) “do you hear voices in your head?” Really, dr. H? Really? Let me show you how I use my phone when I donʻt see a damn thing on the screen…

So how did we get here? Oh yes, the woman with a strong Indian accent I was forced to video chat with decided to put on some labels on me. The old man that does not understand how headphones work tried to sound understanding but he talked aways on a tone Iʻm used to hearing when people talk to at (not with) mentally defective people. While squeeling on his chair trying to tell that DMV or DPS didnʻt need to know about my epilepsy drugs (oh hello… “cultural differences”? In Europe people who are on prescription epilepsy drugs are not allowed to operate a motor vehicle, period). What a bunch of tools.

So what gets missed on the way here? I am happily writing this home on my Mac – that has a Braille keyboard so I donʻt have to guess what Iʻm typing even when I donʻt have VoiceOver on. I have music playing on Amazon Echo so the whole living room resonates nicely. My cats are sleep, and Iʻm waiting for doing a nice run in the evening with my love, after a twitter chat soon and some cleaning around…

Oh yes, “a few little” things get lost on the way. So what difference could these possibly make if they had been on my charts or if the doctors had been able to use their brains?

  1. English as third language
  2. Always had problems with circadian rhythms
  3. History of eye surgeries, and my eyesight is EVEN with correction between blurry and the magic word (“legally”)
  4. A documented history of brain injuries – one of which led to the loss of a driverʻs license that had vision restrictions
  5. Braille reader; inability to read text usually: ALSO certifiedly dyslexic
  6. Inability to hear “the tone of voice”, see point 1 but donʻt assume
  7. Inability to see facial expressions, see points 2 and 3
  8. Tritanomaly, or: ability to see some color, ability to see some light – also ability to sometimes see the ground when running
  9. Does not gender-identify as the sex assigned at birth
  10. Loves languages and words
  11. Does not understand the point of long monologues or “discussions” about oneʻs emotional statuses (the type e.g. women are expected to do: self-disclose emotions for several minutes for no apparent reason)
  12. Misses cultural clues
  13. Hates speakers of medicalese and women who have a voice that sounds “empathic” (or like the female voices in TV commercials)

So, there.

I do not “suffer from” blindness related issues. I like enjoying my life the way I like it. I donʻt see all the colors, and I donʻt always see the ground and I certainly canʻt estimate the distance of cars etc – but donʻt put words in my mouth. Donʻt be like that sighted dick who tried to test whether I can really read braille or not. That was rather rude and unprofessional from you, “dude”

I do not like drugs.

Since no one has given me an epilepsy 101 and Iʻm apparently too blind to figure out what it means to be epileptic, Iʻm much better off without those crap rx drugs for epilepsy. They gave me nasty migraines, and increased the feminine annoyance (discharge, auntie Flo, by 50% in volume). The other drugs the Jewish harp pushed on me made me get very aggressive feelings – which all resolved as soon as I quit with that crap. Oh, I can also sleep again – since that interrupted my sleep really bad. I lost my consciousness every night, and did not get good sleep with it. And no more aggressive thoughts either (at least as long as I keep away from that harp).

However I do use melatonin and 5-htp daily. Melatonin helps regulate my sleep rhythms – why didnʻt I discover itʻs existence years ago? It just works for me – so no need to consider heavier drugs like those specifically marketed for non24.

Do what makes you happy is the most relevant thing when recovering PTSD (let me just dump all shitty hospitals and the gun experience under PTSD). Physical activity, sleep, friends, family, reading, learning, meeting new friends…

Those work well. I love running – it sets my mind free and feels good. Itʻs “thinking with your feet”. Good sleep is relevant – donʻt go for more than two nights without good sleep, or it can cumulate badly. Food is relevant – find what works for you. Iʻm badly sensitive for wheat and I notice in my mood within 24 h if Iʻve been exposed to some. But I work around it because itʻs worth to keep the mind sharp. Writing, crafts, painting etc etc.

Socializing. Do it. Find your friends. Iʻve found cool new friends I donʻt have to feel weird with when I tell about how I use my computer or phone, how I read books or do anything normal to me. And I donʻt have to feel weird when I can (and have to) tell them to come talk to me if they see me somewhere but please tell me who they are again because I canʻt tell by voice alone… I get to a meeting late and blame Blindsquare app for that (when it doesnʻt show a wall I canʻt climb thru). I chat with older people while I have a lunch and while they chat about their week or their grandkids and feel connected and nicely included. And Iʻve chatted someone in a netcafe that I was supposed to meet right from a table next to them because I couldnʻt find them – when you can kind of a see a picture but not really. (“I wear green shoes and a black hat” so itʻs all on my terms to be easier to get recognized).

There. I am happy with my life now.

Despite all the crap that happened earlier. May that doctor with an Indian accent and that old Jew taste their own medicines administered at their own bodies some day. Karma will do itʻs justice.

Iʻm ready for more running, and meeting more VI people. I canʻt wait to get a dog that I can take with me everwhere. and to have longer stories and books published (thatʻs what editors are for)

A7 elaborated: My Imperfect Story, #SOSChat # Recovery etc etc tags


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