Category Archives: frustration

brain injury, creativity, faith, family, frustration, hope, inspiration, love, optimism, parenting, recover, stroke

I am…

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…alive (when I may have died in other eras)
…brave (when I least expect it)
…quiet (when the words fail me – or are not words I want tied to me)
…inspired (by sunshine and a warm breeze)
…proud (of my sons and my family)
…sorry (for my new prioritization of me before most others)
…learning (how to be the receiver and not the giver)
…strong (to say no, if it is what is best)
…silly (when I feel like laughing over nothing at all)
…loving (for those around me who deserve so much of my affection)
…grumpy (when I am not able to keep up)
…creative (when I have space to dream)
…amazed (when I consider how far I have come)
…numb (when I consider the road ahead)
…hopeful (when the sun comes up the next day)

Be well,

Jen

family, frustration, memories, optimism, parenting, recovery

Memories

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  • The black iron railing on the concrete steps outside of our first home in Quebec
  • “Dog Patrol” a near-daily excursion as Dad would peddle me around on the back of his bike looking for doggies that I could pet
  • Washing dishes standing on a chair in the kitchen next to my Mom
  • My new baby brother coming home
  • Noticing that he was “broken” between his legs while I assisted Mom with a diaper change
  • My first amazing experience at school with my Junior Kindergarten Teacher (Mrs. Rheaume, I still think of you often)
  • Recording our voice and our home family movies
  • Learning to debate at school
  • Perfecting how to debate at the dinner table
  • Years of summertime joy and crushes and sunburns
  • First kiss
  • Never wanting to see that guy again… good thing he won’t know I mean him
  • Writing my first poem
  • Dancing in my bedroom
  • Transcribing lyrics from radio music
  • Losing my Nanny (maternal and only grandparent)
  • My first bra
  • My first heartbreak
  • Painting
  • First “first date”
  • First “last date”
  • First act of citizenship: I vote
  • Being elected at my high school
  • Graduation
  • An abusive relationship
  • University … a procrastinator’s heaven and hell
  • Pride + Kraft Dinner VS Logic + Asking for money
    (if you know me, you know which I picked… despite not having any milk)
  • Illness and close brushes with despair
  • Family love and how the extended family reinforces the troops regardless of the problem, the timing, or the need
  • The power of a loved one’s beautiful baby girl
  • Smugly taking a job in broadcasting which surely meant that I didn’t need the degree
  • A star named after me
  • Understanding how much that really meant
  • Meeting the son of my parents’ friends “just for coffee”
  • Long distance love in denial
  • Dropping to my knees in front of him and saying yes
  • Moving (for the thousandth time)
  • Marrying
  • Moving #1001 – but thankfully moving to the “M” section in people’s address books instead of the “V”
  • Making babies – the easy part AND the hard part
  • New life all around
  • The beauty of someone else’s wedding
  • Learning what to control and what you cannot control
  • Mom’s life ebbing away
  • Recovery from loss
  • Needing to be loved
  • Losing weeks of my life – a small price to pay because I had never had the chance to say “goodbye, how I love you”
  • Rebirth with my artificial umbilical cords
  • Learning to walk again and to read and write
  • Feeling fear often
  • My brother, husband and father never leaving my side
  • Reaching back to my husband
  • Deciding to act the way I felt people wanted me to be
  • Changing that decision!
  • Making true friends recovering with them in the hospital for more than two months
  • Learning many ways to measure distance (inches, kilometers, aeons)
  • Remarking which friends have stayed… regardless of my quiet
     *smiling at you with gratitude*
  • My sons sharing the experience of being with Mom on the floor (ferociously proud of them now and forever – unless they have behaved unethically or unlawfully you’d be best to complain to someone else)
  • My husband carrying his own weight and far too much of mine
  • Every one of my stroke steps…

And today?
Another year older!!! Ack!!!

Be well

Jen

brain injury, frustration, sad, stroke

Invisible Gag

What does a brain injury look like? An elderly person with a droopy smile and a physical disability… A person in a wheelchair or a reduced physical ability… A car accident victim… Not me – none of those are me – no one can see my injury or disability.

Yes, the woman on the right looks more like me. And yes, maybe she is disabled!

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…