Tag Archives: neurology

A Personal War (in pieces) 

10 Mar

I’m not usually a novelty coffee mug person but I saw this when I was running errands last Friday night.

 

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It’s a blue bunny (like my bunny girl, Otis), I say “hop to it” frequently to kid and coparent, and the glasses and bowtie reminded me of something, but that memory glubglubbed just below the surface…a few days later I learned an old friend had passed…

And I realized that was who this mug was bringing to the surface.  The memories followed and I was in that high school hallway again and Mr. Fleck was telling him I would be missing the end of my senior year, specifically finals. He told him it was because I was sick and would be in the hospital. Mr. Pryor cried. He cried, for me. I had not cried yet, because I had not been alone and safe enough and so much was unknown. But he cried. His compassion and his empathy for the process I was just beginning is an overwhelming, emotional memory. I am in the bookstore on Greenwich Avenue, a year and a half later, after I have crashed and burned through Kubler-Ross, picked my self up with M. Scott Peck, and dusted myself off with nourishing Bernie Siegel.  He is happy to see me. I had been feeling rather ineffective and invisible and was teetering on the edge of a full blown existential crisis. I joke with him about putting barbed wire around the literature section and asking seekers of lit a few questions to determine if I would bestow upon them the precious volumes or if I would provide the corresponding Cliff Notes (it was summertime and even parents would come in to purchase the school required summer reading for their kids and most of them opted for the Cliff Notes over the full books). The next week another adored teacher from school came in. After that,  I would see both of them, frequently, as they always stopped in to say hello.

After a year and a half of working at the bookstore, living at home, and indulging in a motley assortment of night courses at SUNY Purchase, I lept from the nest a second time and headed to Boston intending to pursue a degree and training in cinematography & camerawork.

Septic shock took me out of this body and mind a few months later, and when I was out of the coma and done with surgery, I learned to sit up, stand, and walk again. I learned to sit up and hold things in my hand. I held a spoon. A pencil. My Filofax.

My Filofax.

For me the organizer was a diligent effort toward a resolution for the new year,  to stop storing the details of college and work, all cluttered, in my brain. The black rubbery cover held my only memories, and as it was a newly started calendar and address book(it was only 2.5 weeks into January) it contained little.  I didn’t recognize any names, but I started making phone calls because I was on a metric shit-ton of IV morphine. (Looking back, if I had not opened those pages and started dialing, out of a super-stoned, toddlerish curiosity, my son would not exist today, as his dad was under the C tab, and I was going alphabetically  (but that is another story to share later).)

Some things, some people, were absent from my organizer, and ceased to exist in my sunshiny, spotless world.

Mr. Pryor. Mr. Vaught. Dr. Pavlica. Mr. Montgomery. Ms. Becker.

Until a friend told me of Dr. Pavlica’s passing. And then a few years later, with the magic of Facebook, the memory of Mont was returned, alive and well and exploring Greece with his wife. Then Mr. Vaught passed last year and that news returned him, to me.

Then this week, when I sipped my tea from my bowtied, spectacled blue bunny mug and read on Facebook that Mr. Pryor had passed away.

 
Mr. Pryor.

 
And there I was, near the start of this post, in the hallway, seeing my teacher, who I would call friend, crying for me and my broken pancreas.

 

That is the raw, shitty deal of amnesia.

I’d be more ok with not recalling the texture of my desk,  and the phenolic odor of lab tables with hints of metal chair feet scraped against linoleum , the temperature of the air, the light through the tree shaded windows of the first floor science room, the smell of pencil shavings and warm, freshly exfoliated eraser crumbs, the temperature and the sound as my hand squorsquishes into a forgotten apple in my overloaded backpack.

I could lose that stuff and not mind.

I do not feel as generous about losing whole people.

I am not comfortable with misplacing entire friends, formative experiences, or the multisensory snapshots of spaces in which my life happened.

The endless gift of amnesia is that memories are reconnected and returned erratically and surprisingly. Even the memories rife with terror and pain have value now. Focusing on the return of objective memories is almost like fleshing out a visual, spatial, olfactory timeline and I permit myself to only dive far enough in – as though a bungee tether has me anchored in the present day- to view objective details enough that the Swamp of Sadness (that took took Artu and nearly swallowed Atreyu in Michael Ende’s The Neverending Story)  cannot drag me into the sulking, sucking, stinking, deadly muck. This is a hard-earned, and worthy, skill to master, as every recall hides an abundance of pressure switches.

I have learned that even the terrifying, painful, and heartbreakingly sad memories are treasures when they are returned to me, and not because I love me some psychological torture and relish the PTSD experience, but because I’ve weathered enough in 41 years to spot the tiniest speck of glitter in a fetid heap of the ripest rot. And each wee sparkle fans out dendrites, bringing other memories closer.

I realized, a couple of weeks ago, that I don’t need many of these memories (reminds me of Harry’s rant about Auld Lang Syne in “When Harry Met Sally…”

Harry [about Auld Lang Syne]:   What does this song mean? My whole life, I don’t know what this song means. I mean, ‘Should old acquaintance be forgot’? Does that mean that we should forget old acquaintances, or does it mean if we happened to forget them, we should remember them, which is not possible because we already forgot?

Sally:    Well, maybe it just means that we should remember that we forgot them or something. Anyway, it’s about old friends.)

I don’t need them.

If I can’t remember them, I can only miss the idea of them (again, from “When Harry Met Sally…”:  Harry Burns: Maybe I only miss the *idea* of Helen… No, I miss the whole Helen.) but these content-less hunts of time, occassionally spotted with foggy islands of indeterminate terrain and potentially combative or predatory or friendly fauna hidden by strangling vines, stinging nettle, poison ivy, and heady, delicate gardenia, hold importance to me and that curiosity is not decreased by my lust for information and tireless enthusiasm for connecting ideas.

I recognize my miss-filed memories are important, to me, but I newly recognize that I cannot mourn their absence.  I am developing a more organic appreciation that most keepers of standard-issue (non-autistic, non-synesthetic) brains, who have not weathered two neurologically symptomatic endocrine tumors, do not remember every environmental, sensory, qualitative detail the way I do.

So I can relax now and not chomp at the bit quite so hard when it comes to the reclamation of every moment, every detail, every memory.

I am learning to curate my mind, my memories, my world while carefully maintaining integrity and feeding my hunger for personal objectivity through truth, facts.

It is through this (still very intentional, deliberate) curating and objectivity that I’m learning to express the more subjective and more primal parts of me (how I was trained to ignore those things is another story, for another time).

 

Rest in Peace, Mr. Pryor, and thank you. I’m sorry I misplaced you for so long and missed our friendship. You are remembered for your compassion, kindness, and your delightful wit and biting sarcasm. I’m glad I found you again.

xo,

 

Rebecca I. M.

Huh? What?

11 Oct

Sandy over at AspieTeacher.com (an amazing blog by an amazing woman…If you are, know, or teach an Aspie then it is an incredible resource… If you just want to know more about life with Asperger’s, then what are you waiting for? Head on over!

She wrote a great piece (and I apologize for only getting to it now) on Auditory Processing Disorder that expresses her experience with APD and Asperger’s.

I don’t talk about my experiences with Asperger’s that often, at least here.  Perhaps I should start doing so, as it has come to light that I have been harshly criticized by people who should know better, but for some reason, don’t.  Perhaps I need to stop giving people the benefit of the doubt, as the favor is rarely returned even when it is an extremely reasonable accommodation, causing little to no discomfort or inconvenience to the party on the other side of the communique. .

I do talk quite a bit about raising a child with Asperger’s, as I find some of my issues are challenging to explain, and sometimes I feel like a freak (and not in a jovial “hey, I’m embracing my freakdom” sort of way)… That is until I find that there are plenty of bloggers out there (and non-web based authors) who do talk about it and I realize that I’m not alone, and I’m not just some weirdo who (in the case of CAPD) can’t properly communicate with the ease of sending words and receiving them verbally and aurally.   I need time and space and often paper or my keyboard or a dark, quiet room to digest what I have heard and piece together an appropriate reply.  I need visuals to understand auditory input.  I produce visuals to respond (I type really fast and thankfully while my grip is weak and I can barely pincer-grasp/hold these days, my typing has not been impacted, though I can’t do it when the rest of me is *that* exhausted, I still can do it when I’m heading to that point, when my voice fails me). I watch TV with closed captioning on and the volume up so I can hear clearly (as long as there is no other sound in the house.  Even someone talking in the other room means I cannot focus my hearing on the TV’s sound as everything comes in at the same volume, it’s like sounds competing with each other.  It’s exhausting.  To do anything that doesn’t involve sound as an integral part of the activity, I wear earplugs or sound dampening headphones.  Simply being in the next room while baldguy helps Alex with his homework can be information overload for me, even though I am not participating, it’s like my brain just keeps absorbing and things get mashed up and jumbled and it exhausts me.  Daily sounds are a constant assault and basic things like the dishwasher and the dryer, even the coffee maker and the air conditioner, have me putting up my defenses the moment their sounds are audible.  My defense mechanism seems to be sleep.  Thursdays I can’t even begin to wake up until after 11am, as the landscapers are electrically pruning and mowing the communal areas of our development and *yawn*

With a small and now a not-so-small child around, it was hard to just pop in a pair of earplugs, and I often just gave up on doing anything that wasn’t Alex’s immediate activity-focused.  As most parents of children on the spectrum know, we rely so heavily on our senses to track our children.  We still have baby locks on doors in our home, not because Mr. Smartypants can’t figure them out, but because they do make some sound when a breach is attempted, and that sound can be just enough warning to jump into action.  Thankfully, Alex is not a runner (or a climber). Unfortunately, we usually don’t realize he is getting sick with a fever or ear infection until he starts climbing and totally loses his sense of danger (when he’s well he is the safety captain of our home), so we rely on little auditory and visual clues and a few extra seconds have, in the past, meant avoiding injury or worse.

Baldguy’s two year stint at home has meant that the time when I was once able to control the flux of sound in my environment, when Alex was at school for a couple of hours in the morning, disappeared instantly.   Here we are, more than two years since Jeff lost his job, and I still am distracted by the sound of his chair squeaking or the laundry being run during daylight.   Telephones have been off limits as I cannot focus enough to even process the bare minimum if there is extraneous sound, and I’m on edge at the potential of a distracting sound to the point where I can’t even make a word budge out of my mouth.  It’s frustrating.  It was isolating, but thankfully family and friends are on Facebook for the most part, so I am able to connect in a way that allows me the accommodations  I need, and blogging has also given me a place to put the words that I cannot speak.  The blogged stuff isn’t so much about what I can’t verbally express but it gives me a place to hopefully start a new conversation, albeit one that happens “virtually” and with the typed word.  Writing things down has been a trend since I started being aware of the changes in my auditory processing.  Oddly,  CAPD hasn’t been something I have had since birth, but rather something that seems to have  been caused by other events in my physiology.  Though perhaps I am mistaken and I was just unaware of the difficulty and compensated, under my own radar,  in my earlier years.  Who knows. All I know is what is on my plate now, and if nothing else has been learned over the past 34 years, I have certainly learned to adapt.

I toyed with the idea of adding a CapTel phone, and then the online version that Sprint offers, but that still wouldn’t give me the tools to respond the way I need to.  Email and Facebook private messaging seems more logical as I can digest the information and reply appropriately.  On some days I don’t even log on, I usually pop in for a few minutes, in the midst of the constant tasks surrounding Alex and my therapies and keeping him fed these days.  Communicating this way allows me to communicate effectively, as though I do not have CAPD and as though I do not have Asperger’s.  I don’t text because I don’t have a cell phone.  What?  You heard/read me!  Ok, I have one, but it is for emergencies and thus far I have tallied up a great deal of roll over minutes (on my Virgin pay as you go plan) that I will never use on my little old phone that can’t even go online because it is only slightly more modern than the old brick phones.  The only reason I would want never technology on a cell phone is so I could have a handy camera with me, but then I’d have to take the phone with me, and in this current status I have no idea where it is.  I’m sure it’s plugged in and charging somewhere and if we had to evacuate for a hurricane I’d surely locate it.  I hope.

But I will always be grateful for this technology, allowing me to be somewhat functional in the world, even when I can’t get out of bed, or I can’t get the words out in a spoken form.   I will always be grateful for the community of people who shift focus away from what I can’t do and look at what I can do(preferably not noticing that I may take notes during casual conversation or that I look at their mouths when they talk yet I’m not big on eye contact, especially when I am trying to figure out how to get my words out).  That is my hope for Alex in the future, that people see that amazing person that he is and any deficits are not even noticed as they are part of the whole package of awesome that he truly is.  For me?  All I want is the benefit of the doubt and acceptance. On some days it really seems like that is too much to ask and communication goes haywire, but in the 99% of the time when it does work it is nothing short of miraculous.

Anyway… The picture above is Alex with his gigantic headphones that he uses for his listening therapy (which I will be starting soon and it may help my CAPD.  It has definitely helped Alex.  I will blog about that in the future)… The review of the headphones said “these are not made for people with normal size heads!  these are for people with abnormally giant heads” which I guess was intended as a negative review, but that comment was definitely a major selling point for us as we all have very large heads…

More tomorrow…

xo

B
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No Returns Without Receipt.

14 Apr

I promise things will be more upbeat and accidental thong-esque shortly.
Really.
Promise.

Here’s some good news: baldguy started training for his census job yesterday! The first work he has had in 20 months! So proud of him! I became an Auntie this week when my baby brother and his wonderful wife welcomed their gorgeous baby girl! I hope to get out to OH later this year (pending me being patched up) to meet everyone in person!

Ok, now back to the serious-ish stuff.

So here are my questions for you today.
1. Have you ever had a headache so intense that you lost the ability to comprehend language? I swear I almost said “NARM!” (Six Feet Under) today because I couldn’t find words or understand them. Alex was sweet and hung out with me on my bed until I regained the gift of gab. He really is a wonder, a gift, a miracle. Best kid ever.

2. (and this one is from our local news station) Should adoptive parents be able to return their adopted children? Vote below!

(sorry. this picture was just too perfect.)

No Returns Without Receipt

I’m a little scared to ask my adoptive parents how they would vote. Mostly because my head is just a ball of intense pain and standing in line at Adoptions R’US while the clerk tries to find the 34 year old receipt in the system and my mom makes my dad handle the return while she browses for a sportier model just sounds like torture.

I kid. Well, there’s always a wee bit o’ truth and honey in there for you.

I’m planning a longer bit on adoption, as it has been coming up so frequently lately- news, blogs, twitter, etc… I just kind of want to put my perspective (as an adult adoptee with multiple disabilities) on these issues… But for now…What are your thoughts?

Is returning an adopted child screaming of equality? The next thing you know, natural born are going to be demanding to be returned as well. And frankly, there are some rather sizeable physical limitations to that scenario.

Anyway,
I will call the doc in the morning. I just can’t get comfortable. I am reading quite a bit though, as the Kindle is light enough that I can lock up my elby-bones and read while resting flat. As of this evening though even pancaking myself on the bed isn’t easing the pain. So I’m up. For now. Until meds kick in. They don’t even take a nip out of the pain, but they make me sleepy and take the edge off the raw pain*-adrenaline cocktail that is ruling my life lately.

xo
B

*and really I’m not a big baby. I have been through some crazy shidoobi in my day, especially with medical stuff. I have a hugely high pain tolerance and between that and my Asperger’s I think I’m not really making how bad the pain really is clear enough to the docs. I’m kind of a goofy girl, but I get really quiet and mellow and calm with pain. I think I calculate everything more precisely, so as to not trigger more pain or damage.

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This is Spinal Tap…

8 Apr

I’m going in for a spinal tap and a brain MRI…Think we may have narrowed things down, but still big ? everywhere. I just want to feel better. I just want to not hurt this much (I’m used to constant spine and arthritis pain, but this new pain has got to go. I just can’t muscle through it and meds aren’t cutting it.)
I just want to play with my kid.
Update once I am upright again…

xo
Bek

A is for….

22 Mar

Awesome Friend

Laaaaaaa!

Echoes

X-Blocker!

Artistic

Nutty

Drains

Electricity

Reading

(They had to make a “poem” using the letters of their names… That’s just his first name(above)…. His last name list included “Aspie Power!”, “Unique”, and “Superstar!”…The Laaaaa! in his first name is additional proof (like I needed any!) that the apple does not fall far from this Mama apple tree…I have been known to bust into showtune or operatic moments… Lots of “Laaaaaaa!” for no apparent reason, and just for fun…X-blocker is his superhero name.  He can throw his arms and legs up and out like an X and bam! you just can’t get by him-especially in the kitchen or if you are carrying something bulky.)

Anyway, he’s having a hard time.  His teacher, from what I am getting at this end, is having a hard time understanding that Alex’s misunderstanding directions is not willful.  He spends hours on homework with his Daddio every afternoon- so much so that he has no time for play during the week.  It is a struggle.  I think a regular, non-Aspie, non-LD kid would take awhile on the homework, especially as a first grader, but for Alex it’s near impossible.

And the kicker?  They sent home a homework folder with instructions on when homework is due, grading (if one bit is not done he gets a 0 for homework for the whole week), and what needs to be done (ie 5 spelling activities, x number of pages of reading, x number of pages of handwriting, x number of pages of math homework, etc…All supposedly per/week…)

So what do we find out?  The instructions in the homework folder are completely inaccurate from what the teacher wants.  So who gets penalized?  You’ve got it.   It wasn’t x number of pages of math/week- that was a typo- it was that many pages PER DAY.  For the love of Pete! And nobody told us until we were more than half way through the quarter!  They gave out a project assignment, with a due date, which Alex and the bald guy stayed up late working on (and even took a field trip to add authenticity to the “magazine” they were creating)… Alex goes to hand it in and guess what?  It is due the next week and now it is double the pages and there are more parameters to follow.

So, WTF?

To top it off, Alex has come home a few times seeming pretty glum.  I have asked him what happened and I used to assume it was a kid/social issue, and it is sometimes, but more often than not his teacher (who I have met and she seemed like exactly what Alex needed…We did provide the school with information that explains Asperger’s on a basic level and I even gave them some books on the topic and offered both myself and the bald guy as available to address any concerns, questions,etc) is making comments to him that are really pissing him off.  Ok, that’s my word.  But as he has recently taken to not lashing out when someone says something that doesn’t make sense and instead is bottling it up to bring home to me, the words are eroding his self-esteem.

Today he came home and told me that his teacher said that he only does his homework when he feels like it.

?!?$?#@%$@$

WTF?

4 hours nightly and no time for play… Any other time is used talking about social stuff and reading together.

And she thinks he’s only doing homework when he FEELS like it.

Yeah. I know!

The baldman is going to have to go in to talk to her and the principal.  I can’t do it. The same questions and gaps in communication keep coming up and baldman and I are forever walking around with Peanuts squiggles over our heads about the things Alex brings home- homework, things that other people said…. Baldman is going to have to take this by the horns.  I’m too sick (this is the first time I have my laptop open for more than 5 minutes today.) and tomorrow I am pleading with the ER to admit me for tests. Something very screwed up is going on with my spine, nerves, brain.  I’m in pain, I’m exhausted, and I am not alert at any normal human functioning time to communicate with school. And I can’t drive. I can barely leave my bed. And the whole getting my point across without following a tangent and never getting to the point- you know, my Aspieness, my ADD-ness- also lead to Baldman handling this one as an answer.  But it’s really hard being the one that understands Alex. The only one that really understands Alex because we share a neurological disorder, and because of that disorder and my other health crap I can’t advocate for him.  I can’t be as active as he needs me to be and I swear to *insert deity/higher power/universe at large here* that I would rather be a head in a bubbly giant pyrex beaker thing than this broken pile of pain and vertigo and numbness and hypersensitive senses, because as long as there was a way for me to communicate effectively I would do so.  I would advocate for my kid, loud and clear. And people would give me the benefit of the doubt and come to be with questions or for clarification, rather than just ignoring me or judging me.

This is so frustrating.

Anyway. I’m off to the ER tomorrow. It’s the only way I can get the tests I need to see if the damage in my spinal column has finally impinged on the cord, and maybe figure out what the heck the mass on the back of my leg and on my left abdomen are all about.

Sorry for the bitch-fest. Had to get it out.

No where was I… Oh….So…. Parents of awesome Aspies and kids with communication/learning disorders etc..(similar or otherwise)… Any suggestions on communication between home and school? I was thinking of doing the daily report card thing…Has anyone had any luck with that sort of thing? Any suggestions for a kid who doesn’t have an IEP (he goes to private school)?

If I wasn’t this sick, I’d homeschool him in an instant.

And no the baldman can’t do the homeschool thing because (drumroll please) he starts work in 3 weeks! Yes! That is the good news you have waded through this post for since you read the word “LAAAA!” up top!  Baldman got a job with the census!  He starts training in 3 weeks. Which means that even though most of the mechanics of this old broken body are not working or are not feeling right while they are working, we are in a time crunch….

Anyway….suggestions? resources?

hugs all around.

xo

B

P.S.  Once I am back on my feet- or at least sitting upright a little more comfortably, I will be running some sort of a fun and exclusive fund raiser to pay for the impending hospital, docs, and lab bills.  I have a bunch of stuff I never listed and I’m thinking of doing another grab bag extravaganza.  Whatever it is, it will be pretty sweet, ok?  If you have other ideas let me know!

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