What you may not understand is that I walk well, I have no phyical outward sign, but...
I am afraid of noise, I can't decipher sound including conversation without a visual cue. I need hours to write messages to my satisfaction and I can't read a paragraph without restarting at the beginning over and over and over. I can't always think of the right word (shape with 4 equal sides... I see it... I can draw it but I can't think of "square"). I can't remember things I have been told and I forget to take my medications. So now I wear a watch that beeps for my meds but when I am focused on something else I consciously teach myself to ignore other things (this often means I ignore the watch beep and I miss meals and the need to pee or a person trying to talk to me or whatever). I find tv commercials overwhelming and I can't read a newspaper. I am not able to drive and I am scared by the noise and crowd on the bus. Nonetheless I have been rejected by the OCTranspo as not being handicapped enough to qualify for their assistance...
One time, at a hospital, I was told that I had the "worst" type of disability because it is the kind that no one can see. No one can believe and no one can imagine the chaos and pain and desperation inside my skull.
I am told to "get well" and that I will be "fine."
Well my "stroke" is even kind of a misnomer. Put simply, my brain bled uncontrollably and it was damaged. To save my life, they sawed into my head to recover as much as they could. The brain damage from my hemorrhage is not healed and my blood drainage in my brain is still clogged and please understand that I may never heal. Might I improve? Yes. But I might not. If I do regain former abilities thanks to the human "plastic brain," let's all just consider that a happy surprise. What is me is what is NOW.
Don't panic... but I ask you all to forget the "old Jen". She changed on Sept 8 and "new Jen" was like a phoenix who rose from the ashes and spread her wings and flew... shaky and sad but flew and flies still today... And yes, I look just like the old Jen... But I am not trying to recuperate - I am trying to walk on my new path.
My poor husband has the burden of being everyone's access to my status. Please give him a break. My husband, sons, and family are all also trying to cope with the new me... He has not left me and he has never been angry about his new wife. I guess, with the almost-result of being widowed made him want me no matter what was left of me when they closed my head.
These days Kirk carries more than his fair share so please don't add an additional burden for him.
I may have invisible disabilities but he is the one who is untreated for the trauma of his wife's sudden collapse, brain hemmorrhage and weeks of unconsciousness etc.
I was able to cope on the phone when I lived in a hospital with controlled noise and sensory stimulation. Months later, in a "real life" home and setting, my brain gets tired and I rest. Even writing my blog is draining... And after my rehabilitation days I want to just sleep - and most of the time I do (my brain knows what it needs and I love my old dented brain).
Please feel free to write but be patient for my reply. And don't panic - it doesn't mean I am lost, or depressed, or dead, or anything bad. It is a miracle that I can respond at all.
And when you see me I will look "fine" and I am better than fine... better just because I am alive.
But I have started to dislike seeing people knowing that I am being watched and evaluated and the result is "wow, she looks fine" or "I think she's better/worse/quieter/happier than I expected"
I also dislike "don't worry, you'll be fine." What does that mean? And fine to whom? And what about the traffic jam and raging forest fire in my head? Is that fine? Will it ever stop? Who knows? I don't. The medical team doesn't. So I have stopped expecting "fine" - today ... right this second ... is good enough for me.
From now on let's set a date for me to be re-inspected. February 2012. Not a minute before. And I reserve the right to withdraw that date.
I hope you can sense the frustration in my text because it is the only hope I have of sending you the message. And usually I temper myself and edit to show the happy/upbeat me. Well... today this is what I need to tell you. And if you can't imagine what I am feeling, I hope you will never have the misfortune to feel it yourself.
Ok. Now time to do some yoga, and shout out loud in my empty house, cuddle my dog, spend some mindful time, have a nap and maybe book a haircut for the first time since last spring (April? May?).
I will hate going for a hair appointment in a busy noisy salon (that I used to love) but I hate looking like an abandoned lawn even more!
Be well,
Jen
P.S. I wrote this between rehab sessions. I was in a cafeteria style room with about 12 adults. Here is my brain fatigue from its pattern chasing every sensory input:
- fan noise
- scribble a sentence
- clatter of dishes
- fix sentence
- someone's laughter
- re-read para 1
- trolley in the hall
- re-read para 1 again (did I already do that?)
- hammering somewhere nearby
- someone coughs
- a light turns off in an adjacent room
- what was I saying?
- laughter behind me
- I'm crying and I can't stand it anymore
- I cover my eyes and ears and that feels better but to write I need another hand so I remove my hand shields and I dive right back in
- someone drops something
- force myself to focus
- .... Writing ...
- yay! done!
- oh shoot! now I am late for the next session, I missed meds, I didn't eat, do I have to pee? No. Yes. Not sure but I will anyway just in case.
- I'm cold. Why? Don't know.
- darn where is my next session?
- I need to rest
- and so on...
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