Friday, September 26, 2014

Autism quote- because other people just say things better than I can!

My first "real job" out of college was working with an autistic 6th grader. Since my TBI, I have often thought of him and all the lessons he taught me that, at the time I had no idea were lessons I would later really need!  Lessons on how to come up with a strategy to cope with a world that forces you into their fast paced, overstimulating, hard to relate to existence! I would go back and hug that child and tell him how sorry I was, I truly didn't get it. It's not exactly the same but, as I read these words I feel like they could be said for having a brain injury too.................

"Now your mind is a room where twenty radios, all tuned to different stations, are blaring out voices and music. The radios have no off-switches or volume controls, the room you're in has no door or window, and relief will come only when you're too exhausted to stay awake. To make matters worse, another hitherto unrecognized editor has just quit without notice—your editor of the senses. Suddenly sensory input from your environment is flooding in too, unfiltered in quality and overwhelming in quantity. Colors and patterns swim and clamor for your attention. The fabric softener in your sweater smells as strong as air freshener fired up your nostrils. Your comfy jeans are now as scratchy as steel wool. Your vestibular and proprioceptive senses are also out of kilter, so the floor keeps tilting like a ferry in heavy seas, and you're no longer sure where your hands and feet are in relation to the rest of you. You can feel the plates of your skull, plus your facial muscles and your jaw; your head feels trapped inside a motorcycle helmet three sizes too small which may or may not explain why the air conditioner is as deafening as an electric drill, but your father—who's right here in front of you—sounds as if he's speaking to you from a cellphone, on a train going through lots of short tunnels, in fluent Cantonese. You are no longer able to comprehend your mother tongue, or any tongue: from now on, all languages will be foreign languages. Even your sense of time has gone, rendering you unable to distinguish between a minute and an hour, as if you've been entombed in an Emily Dickinson poem about eternity, or locked into a time-bending SF film. Poems and films, however, come to an end, whereas this is your new ongoing reality. Autism is a lifelong condition.
Thanks for sticking to the end, though the real end, for most of us, would involve sedation and being forcibly hospitalized, and what happens next it's better not to speculate. Yet for those people born onto the autistic spectrum, this unedited, unfiltered and scary-as-all-hell reality is home. The functions that genetics bestows on the rest of us—the "editors"—as a birthright, people with autism must spend their lives learning how to simulate. It is an intellectual and emotional task of Herculean, Sisyphean and Titanic proportions, and if the autistic people who undertake it aren't heroes, then I don't know what heroism is, never mind that the heroes have no choice. Sentience itself is not so much a fact to be taken for granted, but a brickby-brick, self-built construct requiring constant maintenance. As if this wasn't a tall enough order, people with autism must survive in an outside world where "special needs" is playground slang for "retarded," where melt-downs and panic attacks are viewed as tantrums, where disability allowance claimants are assumed by many to be welfare scroungers, and where British foreign policy can be described as "autistic" by a French minister. (M. Lellouche
apologized later, explaining that he never dreamed that the adjective could have caused offense. I don't doubt it.)" - The Reason I Jump:
The Inner Voice Of A Thirteen-Year-Old Boy With Autism

Wednesday, September 3, 2014

the lost quote

"I thought that losing Sarah [insert your name here] was the worst thing that could happen”, she has realized, “There’s one thing that is worse and that would be to have never have had her in the first place.” - Jan Phelan (Sarah Burke's mom)

I am nothing if not persistent! Something triggered a memory of a quote I loved from Sarah Burke's mom.  I fixated on it for weeks now, unable to just "let it go!" So, after checking my email accounts, hundreds of blog posts, Facebook account and notes in my cell phone where I usually jot down "words put together in a way I love!" I found it today, 'THE QUOTE' [insert loud asending noise here] that was tucked in the back of my memory! It made me think about memories and how thankful I am to have them still. As I am typing away fast and furious, hubby looks up and risking a meltdown from me for interrupting my train of thought, asks ,"What ya workin' on?" I respond as nicely as I can "a quote", he follows with "oh boy, which one now?" I read it to him as he smirks and says "Wow, that was weeks ago." I'm glad he still has a sense of time!! It made me think of all my therapists trying to help me work through all of the "but I remember [insert anything I was trying to do]." You see, early on I confused a memory of doing something, as proof that I could still do it and just as well and easily as before. I always saw remembering as a blessing! The first time I met with the agency helping me "reenter" life, the specialist assigned to my case had a disability from birth.  The first thing he said to me, was that he had been born with his disability and he never knew any other way of living!  He looked at me and said "but you, you have both the blessing and curse of knowing life as a person without those particular struggles." Oh the tears, he got for saying that, they touched my heart in a special way! I'll still take the memories even if they now create a struggle at times. In the hospital at some point when I began to interact again, I recognized that what I had lived through was pretty incredible, eventhough, I had no capacity to understand people's reaction to reading my medical charts! Honestly, it scared me that people would make such a huge deal about how "lucky I am to even be alive." That is when I first started to realize what a blessing my memories were.  They were little treaures of who I was and what would shape me now!  I was amazed everytime I remembered words for things or a person's name or a childhood recollection. By amazed I mean, cried, every memory a tear that rolled down my cheeck locked away in my heart forever!!!! As much as I couldn't imagine what I lived through, losing memories seemed so much worse, I clung to them for all I was worth. They were the remaining pieces of me! Sometimes, I forget my personality has been altered. For example,  once a people person, I found being around people 24/7 energizing and I hated being alone at all!! Now, to survive, I need hours of alone time every day.   I know Jan Phelan was talking about her physical daughter but I just loved how she said it! Perhaps the language of grief and loss is a univeral language! Now this fragile, introvert must go and try to recover (yup, still crashing) from a late Friday night!