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IamA man who once was blind, but now can see AMA!

Jan 29th 2018 by driftingfornow • 15 Questions • 71 Points

Hi, I'm u/driftingfornow.

As the title says, I once was blind, but now can see.

Slightly more than a year ago, I began to get pain in my right eye while visiting my future in-laws in Europe first the time during a Christmas dinner. By the end of the week, I had lost all of the sight in my left eye and began to have complications with partial paralysis that totally paralyzed my bladder and bowels into the 'off' mode. I lost thirty five pounds in a week, developed severe pain in my spine and my eyes, and nobody knew what was going on with me.

While figuring this mess out, the night after New Year's Day, I began seeing swimming colors in my right eye and feel some pain. Guessing what was about to happen, I made a post on Facebook addressing to my family stateside that I might be about to become blind and that if I did not reply the next day, to please route any questions through my at the time fiancee.

I was hospitalized in critical care (le departement de reanimation, haha) for four weeks, given a huge dose of cortico steroids, a lumbar puncture (spinal tap!), and finally an operation known as a plasmapheresis or plasma exchange after a series of MRI's confirmed total bilateral optic neuritis (the insulation around my optic nerves had lesions and when they inflamed, the insulation around the nerves, called the mylean sheath, let signal loss occur, is my understanding). The partial paralysis was Transverse myelitis, which is the same concept, but in the spine.

The plasma exchange involved installing a catheter port directly into my femoral artery. This was not fun.

I was diagnosed with a disease called NMO, a neurological autoimmune disorder that causes your own anti-bodies to falsely identify your own cells as invading bodies, which your antibodies then attack. NMO in particular classically targets the spine and the optic nerves, causing ON (optic neuritis) and TM (transverse myelitis).

Besides that, NMO has many other quirks, causing severe fatigue, brain fog, severe muscle spasms, muscle weakness, a breakdown of your body's ability to sense temperature (anything outside of a ten degree range of room temp for me feels burning or freezing, or most commonly, both), as well as nausea, intractable vomiting, and vertigo.

I was medically repatriated and spent three months recovering. My wife and I missed our scheduled wedding due to my illness and being across the ocean from where it was planned, but were married four days after returning to the United States in a small, private ceremony in our living room with the family and friends that were able to make it.

I still have significant physical issues day today but am getting by in life. It has been a big year of adjustment to my new normal.

A huge thanks to my wife as well, whose normal also got radically readjusted, and who has dealt with it fantastically. Her family was a bit worried about her marrying a guy from a different country who they met under very odd circumstances. They have mostly since come around. Anyways, my wife is my hero, and I could not do any of this without here.

I'm here listening to Elliot Smith records, hanging out with my cats, to answer your questions. AMA.

Imgur Link

  • On a side tangent, I have a very small Kickstarter for recording an album. Check it out or don't.

Kickstarter for albums of Eponymous Sparrow

Thanks.

Edit: I have to go to class shortly and will be back in an hour and a half to two hours. Sorry, have to learn!

Edit 2: I forgot a neurology appointment and am on my way there. Replying by mobile, sorry if it is a bit slow.

Edit 3: Triwest (some VA/ Tricare affiliate) called and canceled my neurology appointment for me. So I just drove 2 hours for nothing. AMA.

Q:

Hooyah

A:

Kill


Q:

Hooyah

A:

When I get back, if you are interested, I can show you my mugs. I don't know if you are a coffee man and a mug man or just a coffee man.


Q:

Like all good coffee men, I too am enticed by a good mug.

A:

Alas, I have forgotten a neurology appointment and am en route to that. I will have to update you on the mugs in about two hours or so.

Whew, my hero drinks out of mugs. Not some filthy dedicated paper cupper.


Q:

Oh, FFS, no...just no. My daily travel mug is a stainless 24oz Contigo. It serves me very well. It's now 3:10pm (apx), and my coffee, whilst not hot, is still pleasurably warm. It was poured at 7:45 am.

A:

Oooh, nice. My wife just lost her contigo last week at work and it was nicked. Those are really nice.

For work, since my job is on my feet and hands busy, I don’t benefit from a travel mug or thermos currently because the only times I have to drink coffee are predictable and during periods of the day where I have time to make it if needed.

I’m currently rocking a French press at work and carrying the beans when needed. I don’t bring my home mugs to work, not after the PO3 messing with them. I use the glass mugs there.


Q:

Oh, FFS, no...just no. My daily travel mug is a stainless 24oz Contigo. It serves me very well. It's now 3:10pm (apx), and my coffee, whilst not hot, is still pleasurably warm. It was poured at 7:45 am.

A:

What’s wrong with the machine?


Q:

What are your favorite things to look at?

A:

Hmmmm, that is an interesting one.

My apartment situation is a funny one for someone who is mobility impaired. I wasn't quite ready to kick off my boots yet, and live in an apartment three stories up with a sun room for a living room.

Outside of our windows, I can see people walking by on the street, squirrels outside on the branches in the trees (our cats love this), and in the spring, sparrows nest about three feet outside of our south window (our cats -really- love this). This room also faces south east, allowing in the sunrise.

In the spring, when the leaves are on the trees, with the southern window open so that I can hear the sparrows chirping while the sun rises (sorry that my favorite thing to look at involves sound, that's a weird answer). That aggregate of the early morning squirrels, bird song, and leaves framing the sunrise, I think that is currently my favorite thing to look at. It looks like an impressionist painting with my visual resolution.

I also really like sidewalks because the textures that shift and move in my left eye really interact oddly with the sidewalk (which is kind of the visual equivalent of television snow or static) so my eye superimposes textures and purple and greenish undertones in the sidewalk that look like constantly morphing snowflakes. That's really interesting as well.

In general, texture dense objects are interesting to look at, while being hell for looking for stuff.


Q:

What is your favorite book?

A:

My favorite book is uh.... ah man, that's a toughie. Honestly, can that question be answered? It really depends on my mood.

Pre-reply edit: Actually, there might be one. I have carried it with me everywhere for several years. It's by a guy who was a scientist but also was interested in mysticism with the pyramids, stonehenge, etc. Anyways, he wrote this book called, "Starseekers," which aside from a prologue talking about his investigations of dousing and some other out there things, is otherwise a fantastically well written and researched synopsis of the history of astronomy and cosmology. It's my favorite book on the subject.

Also, anything Feinman wrote is amazing. I really suggest, Surely You Must be Joking Mr. Feinman. He was a physicist working on the Manhattan project, and later at Berkely. Among many hilarious anecdotes, he relates his fascination with lock picking, and lock picking at Los Alemos, to the frustration of a commanding officer in charge of the place, as well as joining a Carnival band while living and working in Brazil.

Tattooed on me, I have Harry Potter (three dementors superimposed by Harry's patronus), Chronicles of Narnia (illustrations from the Magician's nephew, Polly and Digory meeting the first time and the Cabby and his Wife, first King and Queen of Narnia); excepts from Isaac Asimov, 1984 (2+2=5, from my days in the Navy as a reminder that while the military and logic don't always line up, 5 is the correct answer for the sake of keeping on alright); and that's it for literary references tattooed on my body, although I'm not finished being tattooed from my favorite literature yet.

My favorite short story, I can answer: The Last Question by Isaac Asimov: the OG Dewey Decimal Gangster. (Isaac Asimov is the only author to have been published under every section of the Dewey Decimal system! You are now subscribed to Asimov facts!)

Besides that, I really like Keruaoc (sp, sorry, going fast), Vonnegut, Chbosky (specifically Perks of Being a Wallflower for him, the rest are everything), Amelie Nothomb (In English and in French, she is a Dutch author raised in Japan and New York and she writes about that and sometimes absurdist novels or philosophy, really awesome).

I also enjoy Le Heptemeron (a collection of interesting short stories and tales in French with varying moral symbolism, GREAT READ.)

For YA fiction, big sail days (I was in the Navy in Deck department and later Navigation, I eat old sailor literature up) I would tell anybody to read the Bloody Jack series. Seriously, it's incredibly well researched, written by an ex-Navy officer and maritime historian about a strong female character who pulls a nautical Mulan and enlists into the British Navy, and I'll leave it there.

Harry Potter again, because when I was blind, my wife bought me an old school mp3 player with like 1g of memory or something and only a button for forward, back, pause, play, and menu. A friend of ours back home emailed her the Deathly Hallows audiobook and the Three Musketeers. Deathly Hallows was great. I did not enjoy Three Musketeers as much, the narration and translation ruined it for me. So I listened to Deathly Hallows like 9 times.

I haven't gotten up from my chair, but if I went over to my shelf, I could make a list.

Sadly, I struggle to read books these days. I have severe short term memory issues and quite constantly forget what I read the day prior. Try House of Leaves with something similar to early onset Alzheimers, hahahahaha. I haven't experienced this much immersion since watching The Perfect Storm while sailing through a Typhoon.


Q:

Isaac Asimov

Isaac Asimov aka The Good Doctor

A:

Isaac Asimov is my literary hero. So much knowledge, for the value of brevity. He passed away a couple of days before I was born. I wish that I could have met him, he is a fascinating and terrifyingly intelligent fellow.

I really wish that I know how Foundation ended for Asimov. I did not read the posthumous, ghost written novels because they were not him.


Q:

Isaac Asimov

Isaac Asimov aka The Good Doctor

A:

There are two answers to reconciling memories.

On one hand, I don't remember what it's like to have uh, 'parallel' binocular vision. Like, I don't remember what it's like for my eyes to see the same. They are completely different. Left sees mostly ochre yellows and navy and dark blues (also kind of vaguely metallic) with constantly shifting textures, undertones of neon greenish, purplish, and pinkish (like if you close your eyes and press the knuckles of your fingers into them with a slight pressure, the colors you see are kind of like that). Just after a while, my brain seemed to accept it an applies a filter to my memories.

But at the same time, I do 'remember' places in the hospital that I mostly didn't see. I regained some of my sight enough towards the very end before getting repatriated that I had an idea of the dimensions of some of the rooms I frequented. My wife took a lot of pictures as well that I later looked at which filled in for my brain all of the details.

When I remember the hospital, I remember exactly what it was like to be blind, but I can simultaneously remember exactly the layout of the place, my room mate's face, and a bunch of visual information that my mind post respectively applied to my memories from photographs.

Besides that, unrelated, but tangential: I have an excellent long term memory of everything up until my first NMO flare. Since then, I have struggled severely to assimilate new information. Cognitive decline is a real concern, so that's one of the other reasons I keep up with learning music, and am also learning French and started learning to code Python (I need to switch jobs from blue collar) last week.

I have a nightmare of a time meeting people and remembering new names, what I'm doing, sometimes where I am and what year it is. My wife handles the finances and important timed things now because my sense of temporality was really messed up. I practice music with a metronome and can feel my sense of time speed up and slow down. It takes me quite a while to warm up before I am locked in enough to have good tempo. It's maddening sometimes as my background in music began classically at 11 with trumpet, so keeping a beat is was old hat.

Sometimes, I forget what I am talking about and wind up digressing into something not as related. Actually, it does make it hard to have 'regular' conversations with some people.


Q:

Isaac Asimov

Isaac Asimov aka The Good Doctor

A:

Oh, and the funny thing about dreaming about the Navy was that I never had dreamed about it prior. It was a love hate thing.

I was medically separated for seizures (prelude to NMO actually) and stamped RE-4 totally ineligible to ever re-enlist.


Q:

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OP, if you need any help, please message the mods here.

Thank you!

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A:

I have two more answers for you that popped into my head, but I have to run and will reply later.

-For my memory the way people act after, and search patterns.


Q:

I am! I made this account to try and stay in touch with people I thought were interesting. As a pen pal sort of thing. I’m not sure, it’s interesting to see how far we’ve come from the days of A/S/L?! And PM to DM,

A:

OMG. YOU GET IT.


Q:

Bonjour monsieur ! Je suis désolée pour la réponse tarde et pour mon français horrible mdr mais si ce n'est pas trop indescret, jveux savoir comment vous saviez le race de qqn ? Ou peut-être vous ne saviez pas ? C'est juste entre les gens qui ne sont pas aveugles (comme moi), il y a la lutte et la guerre à cause du couleur de peau-- à mon avis c'est vraiment stupide, et peut-être votre avis a changé depuis que vous êtes devenu aveugle. merci beaucoup!

A:

Desolee, reponse en Anglais, mon francais est horrible aussi. Je suis Americain, je ne suis pas Francais.

I mentioned in here somewhere else. Someone asked me if there were any surprises when I regained my sight in terms of how people looked. As in, did anyone look radically different than expected.

In my reply, I was listing off anything that could have possibly come off as a surprise. Nobody had any crazy died hair, for instance, or a mohawk. One person had told me they had tattoos, which is really uncommon in France, so I didn't expect her to have nearly as many tattoos, or for them to be so large.

I listed race because it popped into my head that it could be a possibility to think someone was one race/ color/ ethnicity, whatever term you want. I am not French, so I don't have an idea of how ethnicity impacts accent.

Because of this, I never expected anyone to be any race. I don't care about things like this. I lived in Japan and traveled Asia for several years. I don't really pay attention to race because people are either cool, or they aren't. Being blind didn't affect this for me, people were either cool, or they weren't.

Besides that, I was in a very rural area of France. Think like the Kansas or Nebrasksa of France. It was all white people. My doctor from Romania was brown. I want to go to Romania, especially after meeting him.

I honestly don't know why people have such a thing about skin color. I grew up in a predominantly white area of the country, mostly out in the sticks of the country, but I did go to school in a town that had honestly kind of a defacto segregation, not enforced, but scars from history. Families stayed where they were when segregation ended, and the city never changed the name of 'Division Street.'

I changed schools several times in my youth, and my last high school was one very deep out in the countryside. There was an issue with endemic racism. Also sexism, but to a lesser degree, more of a hold-on to outdated values. But I will never forget the racism, a kid asked me shortly after I moved if I, "Wanted play the brick game." I asked what the brick game was and was told, "It's where you drive down division riding in the back of a truck to throw bricks at N******, but if you miss, you have to get out and get the brick."

I was very vocal about what I think of stupid racists at that place. I did not fit in very well there.

At my previous high school in a different state, it was integrated to a degree that there was no clear majority or minority except for a couple of exceptions, typically people whose family were refugees from bad situations, ex. Laotian, Chechnyen, Colombian.

It was a really big contrast.

Sorry to answer a lot more than your question, just my interpretation is that you think I thought something about races before I went blind? I am confused, did you think I was previously racist?

I have never been racist, I never understood it. Like I said, people are nice/cool or they are not. People like to be judgemental about what is different.


Q:

Thank you for responding!! I'm so sorry if I came across like I was saying that you were racist-- maybe because of my bad French :( What I meant to say was, when you were blind how did you think about race/do you think you could tell what race people were?

A:

Haha, I had to have my wife translate that bit, so probably an errant negation or something.

Short answer: surrounded by white people, no. There was one not white person, which was my Doc, which I did not detect because he was Romanian and I don’t know enough about the ethnography of Romania to anticipate anything. I figured he was from Eastern Europe and could look any way, so there was no surprise when he wound up being brownish. Like a nutmeg tan. I am honestly kind of curious what his ethnicity was. I really don’t know.


Q:

[deleted]

A:

The first thing I saw was my room mate in the hospital. I was in the bed closest to the door, with him on my right. I heard him get up, and at the same time, in the midst of a dark void of shadow, I thought I saw one minute slightly less dark patch of black bobbing smoothly up and down across the room in perfect parallel to the sounds.

I wasn't sure that what I was seeing was 'real' and not just a hallucination my brain was making up to fit the sound until my wife came later that day, leaned over me, and I got an impression of 'red.' I asked her if she was wearing a red scarf, and she said that she was and broke down crying.