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.

Don't Have a Cow Woman

Claire and her hay say "Buh-Bye"

There are some things I will miss about no longer having cows.  And there are some things I will never miss.

I will miss sharing my garden extras with my eager bovine family: corn, corn stalks, apple pomice, onions, kale and also kitchen orange peels!  I will miss the hilarity and pure joy of large dancing cows in spring.  I will miss the tender baby calves slipping out into the world. I will miss pure, raw milk.  I will miss the odd sense of identity I found in being the only person I knew with a family milk cow.  I will miss the large brown eyes, rolling in circles to see it all. I will miss naming my cows: Hendrika, Sukey, Ginger, Beignet, Chocolatey Claire, and Yoda.

Hendrika and Sukey

I will not miss having to make hard choices every year about who to keep, who to sell, who to kill.  I will not miss trying to amass a chunk of change for a years worth of Timothy-grass-free hay (Timothy Grass puts Huck in to anaphylaxis... so you see, it's kind of inconvenient) and trying to time it right: after it's been harvest, before everyone else buys it.  I will not miss tripping over baling twine in the barn.  I will not miss cows in winter and sick cows, or the constant fear that I'll need to call a large animal vet out here (because I don't have the truck or trailer to deliver a sick cow to the vet) and since they live so far away and charge by the mile, by the time they'd get out here, before any treatment, our budget would be busted. 

I will not miss killing birds with my electric fence.  Example: I pulled my Spokesman Review from it's yellow road-side house and turned back to my house one recent morning.  And that's how I saw the Harrier's hawk, diving through my field, close on the heels of a group of house finches.  The finches easily flew through the hogwire fence, but the hawk could not.  So it slipped up, and landed on my electric wire.  Being too large for such acrobatics, it wobbled, connected with the hogwire, flailed out it's wings and plunged forward where it hung upside-down, sizzled feet still clinging to the wire.  I screamed and ran in my slippers to unplug the fence.  Even without electricity, the hawks hung there, wings unfurled and upside-down.  Devastated, I collapsed on my pile of useful pallets and mourned.  My farm, basically me, killed a beautiful bird.  All for the cow. How many birds would this cow cost? Would I bury it?  Would I call animal control to remove the carcass for me?  Would I have to saw off it's scorched claws to get the body?  I certainly couldn't leave it there, a coyote-popcicle.  I would feel like shit for a couple days.  Actually I would feel like shit for the rest of my life about this, whenever I remembered it.  I stood from my fetal-like-crying-pose to see if it had fallen off the fence and at least I wouldn't have to operate on a dead hawk.  But it was gone.  I walked the whole fence line.  The bird was gone.  Maybe just to nurse it's singes and die in privacy, away from the prying eyes of taunting finches and the devil's own farmer girl.  Or maybe to live a long, and smarter life away from human endeavors. For that one bird, I won't have to feel like shit for the rest of my life.  For all the others, yes, I will.

I will not miss the constant, and I mean constant, NEED to maintain my fence. At one time, I enjoyed it, but like all such chores, it was getting old. About a month ago, I dreamed that Chocolatey Claire had gotten out again.  I awoke a bit panicked, but realized I'd just checked the fence a few days before.  It must have been her heat-stoked moo-ing all night, implanting her in my dreams.  But you know what comes next, don't you.  You've read this blog a time or two.  And you know that after I returned home from dropping the kids off at school, I looked out into our field and there I saw Claire, well contained.  I went inside, got myself a glass of water and then noticed the neighbors car driving up.  I met him on the porch, "Can I help you?"
"I think that's your cow down the road."
"Oh, that can't be, she just out there in the...."  No, that CAN be.  With cows there is no "can't".
"Is there anything I can do to help?"  He asked.
"At this point, No.  I don't even know what to do.  She's in heat.  Jim's got a bull."
I grabbed my grain and headed out without a plan. That girl was running down the road.  She was already 1/3 mile away. Some of my outstanding neighbors stopped to help.  One just happened to have a couple riding crops in her car to help herd.  But I could see that Claire wasn't going home. We gave it "ye ol' college try and fail" until I decided to go with the flow and opened up Jim's fence.  Claire ran through, and ran and ran and ran across his field.  And within 4 minutes, we'd gotten a call that the girl had done got herself a boyfriend and they done consummated.  The kids and I went to apologize to Jim for the unexpected visit from the eloping horny heifer. And while we were there for ten minutes, discussing what had happened and what to do about it, Claire and his bull mated about 20 times.  And the other cows were all excited about the new arrival.  And so they got in on it too.  And it was a veritable cow orgy.  We are normally rather sanguine about farm animal copulations, but even I was wide-eyed.

I took a picture of the orgy.  Maybe that wasn't right.

Jim, yet another of my wonderful neighbors, got around to returning her to me after about a 3 week honeymoon.  She didn't go in to heat again, so there was some point in returning her to Lucky Farm.  And during those three weeks, I realized I didn't need a cow any more.  I didn't worry that the phone was ringing because my cow was a mile away, or the car in my driveway was there to report an escaped bovine.

It's going to be alright

Claire is a unique cow, a miniature, just perfect for our acreage.  She eats next to nothing.  She's the cow I originally had in mind.  Instead I bought what I could get my hands on, and bred her into existence from that.  And now that I finally have the cow of my dreams, I'm done. I could keep her as a pet.  But I'm looking at my life today, TBI and all, and she doesn't fit here anymore.  Honestly, I'd tried to sell her last fall when I realized my cow joy was over, but no one sane buys cows in the fall.  And now, I'm really in no shape for this kind of work.  Huck's not in to cow-husbandry it turns out and I respect that. I'm certainly not going to demand that he spend his 3 seconds off a week doing my hobby for me. So, there goes my perfect cow.  Let's feel sad for a moment:

(Sad moment)

But I am certain that when the time comes, if I feel like it again, the cow or pony or goat or pig or camel of my dreams will be there, waiting for me on Craigslist, when I'm ready.

That is the End, my friend

As for Claire, she's on to new adventures with a farming family of six, ready to love and treat her right.  I hope you enjoyed some parts of the link-retrospective of moi and my moo cows.  Now what am I going to write about?  Those chickens better get a lot more interesting!

Midstream

Coyote has a new teacher.  And it's not me.  Thank god.  I home-schooled him for 6 days, straddling spring break and it became obvious that I could either home-school him or get better (which is so depressingly slow, I can't even tell if it's happening or not), but clearly the both weren't going to happen at the same time.

the tool box he made himself

We'd had issues with his teacher all year, a few snarky notes home, and some bizarre responses to playground issues.  But, you know, teachers are people too.  They have bad days and get stressed out and have lots of pressure to perform while coping with nearly 30 (thanks budget cuts!) kids.  And I was in this fog (it's actually black, not grey, so maybe it should be called "outer space" instead of "fog") and so we let things slide.

a small rock in the fire pit

Coyote had been having issues and I'd blamed myself, as any good mother would.  It was my head injury.  How could he be happy when his mother packed his lunch with a can of olives and a socket wrench?  Who wouldn't have anxiety when their mother has to pull over every five minutes to rest her eyes and and stop feeling crazy with all the "zoomy stuff"?  All winter he was denied sports and Cub Scouts  (the decision to sign him up for that could fill several blog posts!) and skiing and having friends over and speaking in a normal voice winter because his mother can't drive at night or in snow and can't handle sounds, particularly the sounds of children having fun and/or fighting.  But then his anxiety was worse on Sunday nights and Monday mornings.  So... if it was me, wouldn't it have been worse all weekend?  We were reading books, developing plans, we had a list of therapists and brought him to the doctor to make sure there wasn't anything physical.

But then he says to me he thought he'd figured out what was causing it all: not learning anything at school.  Now that I'm a gifted-education reader-upper-er, I have some exposure to the research. Statistically, he should only be a few IQ points lower than his sister, and should match the IQ of his genetic contributors.  (Reminder: IQ does not make a person better or worse, it's mostly just DNA expressing itself; IQ has benefits and issues just like most traits; IQ is a cultural estimation of a complex concept.) Also, since he's second born, statistically he would be hiding it (since the family niche of brainiac would seem to already be taken).  This might explain why "the brightest child I've ever taught" in Montessori school never showed up for regular school.  And depression and anxiety are very common in underperforming, unidentified "gifted" children.

The Genetic Contributors

So, all that to say, that I wanted to rule out "underperforming/unidentified gifted" as our problem. So I opened up a conversation with his teacher about improving his opportunities for learning and initiate school IQ testing.  That was on a Monday. What followed was a string of unprofessional and snarky emails, most of which I didn't bother responding to. A bizarre "time out" on Wednesday.  The revelation that despite all A's and a fairly high standardized test score, she'd plopped him into the lowest track for reading and languages and there he'd languished all year, not learning anything.  She never told us. Embarrassed, he never mentioned it.  And I was in a deep deep fog/outer-space of disability.  And Huck was out of town too much this winter.  And then on that Friday she publicly moved all of the other children from the track 1 group into the track 2 group, leaving Coyote and the kid who's never ever done his homework in group 1.  Coyote: "I get 100% on all my tests. How can any of the kids who got moved up be doing better than that?"

And so we pulled him out.  And Coyote immediately returned to equilibrium.

looks like a head injury to me

Thanks to amazing advocacy from other professionals at his school (one of which is a particularly amazing friend), and thanks to the history of this happening last year in the same class, and that child was pulled from the school, the school somehow managed to clear the legal hurdles and do the right thing, placing him with a new teacher.  And now he's happy. And IQ testing has revealed killer mama-instincts continue to be one of the most powerful things this world has known.

Random Updates: I cut my hair in hopes of fewer headaches.  The pulling has stopped, but there are still these sensations all over my head.  I am trying to keep myself from shaving my head entirely.  I liked my long hair.  It was one of my favorite things.  And I'm kind of sad it's not on my head.  But also, it's just hair. People keep commenting and marveling on it's absence.  That's just part of the process, I know, but I can't wait until that part is over.

And my speech therapist was worried about why I wasn't making any progress, why the better I get the worse I feel, so she did some tests and apparently my vestibular system got shattered.  I start barf-inducing vestibular rehab on Monday.

The Opa-rator oversee-ing the BB gun

And spring break was awesome.  My dad came for a visit and rocked the grandpa role with b.b.gun shooting, bon fires, fixing every mechanical thing I own, putting up Blue's basketball hoop, making an amazing pot of Chiopino, kite flying, and all that.  My uber-busy mother flew in later and we all spent the weekend at a nearby cabin and I found out that I'm almost as bad at riding in a car as I am at driving.

Them's the Breaks

It has come to my attention that I am supposed to stop doing things BEFORE I feel tired.  It's been hard enough to stop doing things when I feel tired.  But BEFORE? Is this possible?  Do I have that level of self-discipline?

It's me, in a hubcap

After sorting through a web of ill-informed general physicians and recalcitrant insurance companies, after Huck addressed their illegal behavior of not having any neurological support services on contract within our region, after they fixed this issue, I finally got to see a Speech Therapist yesterday.  Just in time for the building's alarm system to go off.  And so I started crying.

Aside from crying, I seem to have the mind of a man these days.  My day is filled with forgotten details. My day is good, or bad, but why exactly I've labeled it doesn't concern me.  I could put a lot of effort into retracing my steps to figure out why I didn't like, or loved the day, but why?  My emotions have no complex, interwoven story behind them full of history and hopes and fears, at least that I care to remember.  I just suddenly feel like crying.  I'm suddenly sad.  I'm inexplicably happy.  These emotions come and go like breath, all of their own accord.  So, I don't know why the alarm made me cry, it just did.

It could be that sounds are harsh.  Everything feels loud and my ears are actually tense.  To amuse myself during this low functioning time, I've spent a lot of time rocking in the rocking chair, staring out the large picture window in the living room, and listening to music.  It's not every 30-something mother who can fully justify just listening to music for hours on end and doing nothing more, not even planning dinner. I can't listen to just any kind of music, I can only listen to single instrument music that goes very slowly.  The amazing thing about my Speech Therapist (who gets a respectful capitalization, like President, or Queen) is that she knew this already.  And the instructions she gave me actually include working on my ability to listen to music, step one being to listen to single instrument instrumentals and slowly moving into songs with vocals.  I've dabbled in those a bit recently, but it's been about one song a week.  Even working on music comes AFTER learning how to stop doing things before I feel tired.  Which reminds me that I'm starting to feel tired.  I am going to be a big girl and step away from the blog for a minute.

And I'm back!

Chocolatey Claire will now eat out of my hand

It's true.  I spend an inordinate amount of time laying around still.  At first it was all spiritual feeling and refreshing.  But after four months, it's just depressing and ineffably boring.  Seriously. I don't think there are really the words to actually eff with any accuracy how boring this experience has become. But then there are these days where the sun shines in my head and there's clarity and energy and there's four months worth of desires to be pursued.  There's gardening and my new-to-me mini-tiller I've enlisted in the fight for flowers and fruit against my persistent lawn.  There's flour-less chocolate cake to be baked.  There are friends to conspire with.  There are children to enjoy and advocate for.  There is a big giant flow of life and I've been waiting in my backwater, gathering scum and frog eggs while everyone and everything courses past me with glee.  How can I resist when the energy touches me?  I am a lover of life.  I do, I stand out in the deluge of spring.  I do, I love to plunge my hands into loam.  I do, I love novelty and to go where I've never been and to explore this world's nooks and crannies and to kiss the sky and the dirt and the colors of every thing. And so how can I not dive in when the river looks so lovely?  Who can stand on the edge of this churning ocean, full and generous with life, and not jump in, clothes and all?

To complicate my restraint, I am very goal oriented.  I envision and I accomplish and I do not rest until I see in reality what I saw in my mind, or better.  I see flowers, I plant and nurture flowers and weed and till until it comes together.  I see a story, I write it until it's done.  I see my house in colors (and since my injury colors are even more intense and emotional to me) and I can't rest my mind or body until the colors all come out right.  If I love it, I'll do it until it is done or I hate it, beyond tired, beyond exhausted. I've learned to work a little more with the flow of inspiration and desire, to not push.  But when the desire is overwhelming, I'll overdo.  And this is now my undoing.  Where once my goal-orientation was a huge asset, propelling me through school and great job performance, it is now my largest liability and feels more like an compulsion, an addiction and a disease.

Since I hate housekeeping, I have learned to approach any mess or upkeep with a timer.  I set it for the most amount of time that doesn't make me feel like I'm wasting my life, or fill me with loathing, 10 to 20 minutes usually.  And then I work efficiently until it's done.  I've shifted the focus of my goal from a spotless space (which takes a depressing amount of time to achieve) to completion of  a set time.

 Ooop!  Break time!

What the hell are you looking at?!

The key for healing will not be to become someone else, no matter how badly I want to be someone else some days.  But to accept my basic motivating operandi and trick it into doing the thing I need it to do.  So my ganas goes not to completing something, but to the rhythm of healing, the stop and go, to quitting before that blank sensation ripples through my head.  My goal is timed reading, timed writing, complete breaks in between.

My TBI has been an unwelcome intrusion thick with frustration and difficulty.  But I can also see it as an adventure, an exploration of myself and new sensations, an experiment with approaching life differently.  I have felt loved and cared for.  I have seen the world from the eyes of a person with disabilities.  I have met incredible TBI survivors.  I have meditated the hell out of my days, quieted my mind with emptiness so that instead of a burbling cauldron of thoughts where I'd try to stuff good ones in among the crowd, it's been emptied and the best ones have tumbled in and found plenty of space.  I have learned to recognize "spiraling" and step away from it.

Statistically, my chances for a full recovery are wonderful.  My Speech Therapist tells me that all my IQ points are still there, they just need to be resharpened and reorganized.  Honestly, I have never been called on to use all of them and the extras have been causing problems, so I was actually kind of happy about bringing it down a notch in my head, but she tells me there all still there. I hope we can figure out a good storage arrangement.

I've been through two months of deep fog, two months of processing problems (which were frankly worse than the fog which I still kind of miss), and I've got about two more months of relearning to process with a Speech and Physical Therapy which will teach my eyes and ears how to filter out the crap again.  Then I probably have another 6 months of building stamina and strength and that could stretch on for a year or more.

so much depends upon a red wheel barrow

In the meantime, I do enjoy the humor my mind creates.  Like doing the exact same grocery trip with the same list twice.  After I stuck the bags from the second trip in the back, I sat down in the front only to find I'd put the bags from the first trip in the passenger seat.  Yesterday afternoon I was trying to tell my kids I'd purchased apples for snack but what I said was, "I bought some wild flower mix for snack today." I'm sure my family could tell more tales but that's all I can remember for now.  And rest.