Monday, May 20, 2013

My Life as a Sensory Deprivation Chamber

The Wasp and the Tree Peony
The whole of civilization seems to be about stimulation of every sort.  You don't really notice this when you are normal and functioning like a regular human.  What you think is: let's go out!  go for hike, go for a movie, go to a festival, go out for dinner, see an opera or play or concert, go to the races, listen to the radio, go for a drive, read a book... et al.  We seek to have our senses enchanted and titillated.  This might just be the job of the soul, to seek rapture and joy in being, and all of these things we have built to increase that, to make our sensory experiences bigger, faster, bolder, louder, MORE!  And I am here to tell you that it sucks to be out of that loop, but that also, the soul can be made more sensitive so that the stimulation and connection and curiosity it seeks can be found in small and simple things*... for a time.

When your life becomes a sensory deprivation chamber none of the above are viable entertainment choices.  Just this week, I listened to NPR for 15 minutes for the first time in about six months... and that was plenty, enough so that I needed recovery time. 

Sky Scrapers: those aren't power lines, they're scrapes!
The end result is that I can feel a little... er... rather... okay, totally... abandoned, bored, isolated and lonely.  We seek excitement and we seek these novel experiences with others, to be part of an individuals life and to be part of the life of our whole culture.  And when you are removed from them, it sucks and feels not quite 100% human.  I'm no extrovert and not a true introvert either,  but I sit right on the fence between the two, now more than ever.  I want to be around people I trust and love.  And I want them to be quiet and sit in the dark room with me.
King Louis' every-evening tryst with Catnip

As a result, I've been on Facebook way more than I would care to admit.  Facebook is perfectly designed for those of us with brain injuries.  It provides connection to society and individuals... and believe me, at this point ANY connection is awesome, however electronic and "fake" it seems.  And it provides this connection whenever I feel like it, when I'm ready and for the duration of time I'd like.  It never overwhelms and I never have to figure out how to get out of it.  Everything on Facebook is provided in bite-size chunks, just right for those of us struggling with reading comprehension and retention. I have been tempted to pretend I'm not on Facebook as much as I am, to look but not "like" or comment or let anyone be aware that I am lurking.  That would be more respectable right?  That would make me seem like one of those who have a life, a giant, awesome fabulous REAL life in which Facebook fades into the back ground like a year-old wad of used toilet paper tossed into the bushes behind a campsite by drunk, fighting morons.  But then, that seems even more pathetic, to PRETEND to have a real life, which I don't and I haven't had for six months.  So instead I'm on Facebook a lot and I'm not hiding it.

Rhubarb King
Grocery shopping is the worst of my challenges: rows upon rows of bright colors piled on top of each other, screaming for attention: sugar-free, aspartame, low fat, no fat, extra pulp!  And layered over this visually demanding cacophony is scratchy music, beeping machines, and other people! With Carts!  I recently aborted 3 shopping trips, the intensity was so overwhelming.  With a busted vestibular system, if I close my eyes to shut it out, I will fall over, and then barf.  So I shop with sunglasses on, earplugs in and sometimes a baseball cap pulled over my eyes, prompting one very observant lovely gentleman standing near me to proclaimed, "Confused! And Retarded!" and then run off.  I couldn't tell if he was talking about himself or me, slowly shuffling through my own personal business.  Either way, he was talking about himself.  And what decade did he pull that r-word from?  I will say that I prefer being hit on to being called a retard, although they are related: it's all about them and their opinion, not about you.  It's so odd how the comments of some random a-hole can hurt, no matter what the logic says.

This Asparagus claims to remember being a Cobra in a past life
I am now going through the first days of  new glasses: "When did my skin take on this lizard effect?  Why are my children so close and clear?  When was the last time they washed their faces?  How is it possible to be dizzier?"  The exam made me horribly ill and I cried from stress and put my head down a lot. But this was the very first exam where they said, "What is the lowest line you can read without straining?"  Without straining?  No one, not in the 22 years I have worn glasses has told me that I didn't need to strain.  I mean, it makes sense now, no straining... that's the point of glasses.  But they called it an "exam" and to me that meant I should work as hard as I could, get an A. Imagine, all these years my striving and hard work was simply creating more hard work.

Glasses used to be optional, something I wore to reduce strain, but not necessary.  With my brain now unable to focus on anything when my head is moving or focus on moving objects, it was too stressful to also expect me to compensate both new found farsightedness and old astigmatisms.  And so I hope with these new aids I will make better strides in recovery.

Tree Peony bud offers a cup of water
And although the exam was terrible, I also appreciated eye doctors.  They ask: which is better: 1 or 2.  And then they believe you when you say 1 or 2.  They totally trust that my reports about my experience are accurate and valid.  All of my four therapists do that, but one doctor I saw early just refused to take my word for anything.  I told her I'd had a seizure and her response was "Well, was anyone there to see it?  So it's not documented, is it?" The doctor I saw the day after it happened told me it was a seizure, but no, it's not on youtube and the UN did not send a cadre of international observers to my bedroom on that night. So, help me understand, if a sentient woman has a seizure, but no other person is in the room with her because her kids are asleep and her husband is out of town, did she really have a seizure? Is she also allowed to vote and own property? Do you remove her uterus because it is causing hysteria?  Can women feel pain?  Here's the way this should work: I be the expert on my experience and symptoms and the doctor gets be the expert on what that means and how to treat it. Thankfully, the eye doctor and my posse of awesome therapists get that.

Baby Kale Jungle
I also like how vision is so positively focused.  For instance, I am now really far sighted.  This does not mean that my far vision has become that much better for long distances, but that compared to how I see things close up, it's awesomer.  What if medical doctors were like that?  "Wow, you are well boned at 205. We'll just get you a cast and soon you'll be 206/206 again!" or "You are a champion urine-excreter! So I'm going to suggest Metamucil and prune juice." And for myself, "I am very able-bodied and totally non-Lou Gehrigs.  With four therapists I should be able to make some corrections and get able-minded as well!"

Two Bleeding Hearts are better than one.

And I got a new pet to replace my cow: a kombucha scoby.  I wanted something special to drink on occasion and since alcohol and sensory confusion don't mix, I settled on kombucha and my first batch was wonderful!  Yeah!  I celebrated mothers day playing around with my kombucha mother.. and watching a Poirot with Blue that turned out to involve someone killing their mother.

*These photos, and many others over the past few months are part of my pretend project I've called "Five Acres and a Phone Camera," during which I've been exploring how many interesting shots I can take with my phone without leaving this property.  It's been a focus and exploration of bringing my attention into life's small and simple things.  No grand vistas here!  And digital photos are super easy on the brain... at least the one's I'm taking.

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