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...

Loyalty

Why do we love dogs?

"Near this spot are deposited the remains of one who possessed
   Beauty without Vanity,
     Strength without Insolence,
       Courage without Ferocity, and
         all the Virtues of Man, without his Vices. 

This Praise, which would be unmeaning Flattery if inscribed over human ashes, is but a just tribute to the Memory of Boatswain, a Dog."
 
  ~George Gordon, Lord Byron, Inscription on the Monument of a Newfoundland Dog


No matter how ugly or messy or grumpy or tired I am I have a friend who would stay right on my feet every day of the year if she had that choice.

Her name is Roxy!

For me a dog is the best communicator and a great therapist. We rarely need to speak and we can communicate with eye contact and touching. I never doubt her motive, I never question her honesty, I am not manipulated or fooled... she is a loyal and devoted friend. She has no expectations and is grateful for every scrap of fondness.

Roxy is now almost 7 months old. Time for her training and social classes are due but she already knows sit, and trust, and she LOVES to see her park/walk friends when we are out for a constitutional.

Pets really are special but I have had a dog for my whole life and I loved each and every one of them:
- Toby, Black Lab
- Jessie, Mutt (seeminly Border Collie and a curly-hair breed)
  (who uncannily resembled Roxy)
- Parker, Beagle
- Clancy, Samoyed
- Roxy, Mutt (Australian Shepherd x Golden Retreiver)

And if you are wondering how the boys feel about the puppy... you can likely imagine a heap of bodies on the family room floor - full of giggles and "ewww, she kissed me on the mouth" and her tail sticking out, and then scrambling boys attempting to escape her affection.

Dogs and kids are a nice pair...
                                                                       ...sorta



Thank you Aunt Arlene for sharing this cartoon. Credits to the original artist.


Be well,

Jen

Mindfulness

Guess what! Despite my reduced abilities, my mind is still bright and shiny and beautiful and able! It really is. I spoke to my mind and my body (more accurately... I LISTENED to my mind and my body) this morning during an exceptional period of guided mindfulness in a rehabilitation session.

• When was the last time you sat in silence?
• Have you ever meditated?
• Do you check in with the parts of your body?
• Are you aware of every sense's contribution to the most simple moments?

I would have said No to each of those before this morning but now I will do this as often as possible.

Mermaid me in another place and time

With the benefit of silence and calm and relaxation this morning I saw my brain swim and soar and twirl and circle playfully, pause reflectively and consider things as I always was able. Agile and adaptable and brilliant. Like a beautiful movie in the beautiful sea... 

And THEN it is time to talk about it or to verbalize it or even to define it and suddenly my beautiful movie stalls and stutters and skips frames. The image melts on the screen and my beautiful brain is ashamed and dismayed and looks away... A tear spills into that ocean. Perhaps that is how my ocean arrived... One tear at a time...

It hurts to struggle with the abilities I used to take for granted. It is a huge regret that I was not more thankful for it being so easy at the time.

But instead of living in that regret I have work to do to continue my regrowth. Everything happens for a reason. How can I grieve for a gift that I enjoyed while it was mine? It was not mine forever... only loaned to me. 

Perhaps on September 7, 2010 a new child was born and was gifted with that blessing - if I could find them, my silent gesture would be to tenderly touch their cheek and wish them joy and awareness of the depth of that gift.
Thank you for walking this far with me - even if we have never met I am grateful for your virtual presence - for this shared experience, and for feeling connected to the world beyond my Self. But please forgive me if me, myself, and I spend some quiet time to reconnect.

*smiles quietly*

Be well,

Jen

P.S.: A belated Happy Valentine's Day with an affectionate tribute to my husband whose proposal was 12 years ago... And to my Brassavola Nodosa (a type of orchid) who brings me joy and beauty even in the middle of the night.

Brassavola Nodosa

Saying No

No thank you
I'd prefer not to
I regret that I can't
Nope
Not at all
Never

That's a powerful list. One that I rarely used.

I think most of us seek approval and to be liked. I certainly did. I wanted to exceed the expectations of my loved ones, and friends, and my workplace, and my volunteer organizations.

I very rarely said no to requests from those around me.

Interestingly, something had to give so I started to demote my household needs, my dog's needs, my children's needs, my husband's needs, and ultimately - at the very bottom of a long list - was my own needs. I spent all of the time and energy I had available and then was left exhausted and flopped into bed.

Meh! Who cares, right? That's normal and we are told every day to be fitter, wittier, quicker, more giving, more selfless, more hawt! But the reality is, we are only simple regular people and at some point it's up to us to make our list of priorities and limit the investment we are prepared to make into them.

In my first series of rehabilitation sessions at the Bruyere Hospital I had to be trained to say "No." I really mean that I had to learn it because I did... I even had to roleplay examples of requests and me saying no to them.

My therapist in that session would likely smirk and say that I learned and even told her no a few times by the end. *waves at Beverly my social work guru*

Anyway, just take a second and consider where you rank on your priority list. And even though it seems like it's safe to demote our kids/spouse because they will always love us regardless - just remember that there is a point where you will realize all of the ways that you almost missed out on the most important people in our lives.

Two letters - one word - tremendous power: NO

Use it wisely but as often as you need to.

Be well,

Jen

The Power of Humour

I don't think it matters who you are - or where you live - or what language you speak ... there are a few things most of us have in common.

We like to be happy
We aim to be the best person we can be
We seek for our children to have the best we can offer
We love loving and being loved
We hope we wil not be forgotten, and
We appreciate a good laugh.

This week I have had my initial evaluation/assessment at the Acquired Brain Injury facility and I will be going there for an eight-week program that will assist my rehabilitation in Speech and Language, Occupational Therapy, Psychology and Social Work.

We are lucky to have access to such remarkable and dedicated professionals and I would be remiss if I did not take this opportunity to acknowledge the amazing teams of people who have helped me at the Civic Campus of the Ottawa Hospital and at the Bruyere Hospital. Nothing but the best to share of those two remarkable facilities. I am endebted to their professionalism and ability.

So, getting back to the Acquired Brain Injury facility, my assessments were Monday and Tuesday as well as a medical appointment on Friday. I filled in a questionnaire that asks me about a variety of issues that can be related to my injury. The meeting had been fairly standard and I was asked expected questions about my mood these days. My answer was that despite the challenges I face and the ordeal we have survived, I feel optimistic and positive about my life. I said that I saw it as an opportunity to re-evaluate my life course and to dream of new paths in life that will suit my abilities/disabilities. There was a brief silence as the Doctor nodded and then he made me laugh.

He said that the thing is... my "life" was taken from me on September 7 when I had a stroke and my life has not been restored in the way it was. I nodded. He said that there would be no way to expect that you can live through that without feeling frustrated, angry, confused, or cheated. He said something along the lines of (roughly parahrasing) I would like to be an optimist but I'm not that good... the reality is that this whole situation sucks.

I laughed right out loud and appreciated the candor and humour very much. He's right in a lot of ways... it does suck and my life is frustratingly similar and yet so different. And in addition to physical trauma and cognitive/neurological damage it has been an absolutely crappy assignment of paperwork and insurance forms etc etc etc

So to hear his comment, I still smile and nod. It really does suck. But when I get tugged into that hole I consider the thousands of ways that it could be worse.

But on the days I can't focus on the thousands of worse things I like to have a really good laugh - maybe you will have some of those too ...

http://www.youtube.com/watch?v=3aAtFrWft2k

Be well,

Jen

Sphere of Influence

You cannot control

• sunset / sunrise
• others' decisions
• your loved ones' lives
• time moving forward
• health surprises
• history
• people's perception
• nature
• the rate your hair grows
• your illness
• the loss of a loved one
• when the pen runs out of ink
• the price of gas
• the Faith of others
• the rules of a game that others created
• dogs' preference for puking on a rug
• the mysterious persistance of dust
• your children's dramas
• how much you are needed

BUT

You can control

• how you react
• how you interpret
• how you assert
• how you love (yourself AND others)
• how you sacrifice
• how you refrain from judging
• how you measure success
• how you value silence
• how you respect differences
• how you care for your life
• how you pick your battles 

Please add your items if you have others.

***I send love to a close family member who is today having surgery.***

Be well,

Jen