June = Brain Injury Awareness Month

As we close the month of June, I hope you know that June is Brain Injury Awareness Month!

Did you know that the Right Honourable David Johnston, our Governor General, chose to be the Patron of the Brain Injury Association of Canada in July 2011?

Consider this statement offered for your use (offered by the Brain Injury Association of Canada):

"As incredible as this may sound, brain injury in Canada is a silent epidemic. In Canada, brain injury is the number one killer and disabler of people under the age of 44. Statistics further indicate that incidences are two times greater within the male population. 

Mr. SPEAKER, acquired brain injury is defined as a non-degenerative and non-congenital insult to the brain that may result in a diminished or altered state of consciousness, and result in impaired cognitive, physical, emotional and/or behavioural functioning. 

The social, emotional and economic consequences of brain injury are in fact devastating not only to the survivors themselves, but to family members, caregivers, support workers and the community at large – everyone involved with working towards neuro-rehabilitation and recovery . And currently, there are no drugs or techniques that can cure a brain injury. 

Automobile accidents, sports injuries, cycling accidents, falls, strokes, tumours, aneurysms, and other non-degenerative conditions are all leading causes of brain acquired Brain Injury in Canada.

I encourage all members of this House, become involved with grassroot brain injury associations and to listen to survivor stories and family members speak about the support and guidance they have received. Their true life stories will fascinate you. Their courage and determination is really quite remarkable."

Yesterday, I had the gift of sitting on the grass with a magical woman who works at the Robin Easey Centre in Ottawa. [The Robin Easey Centre is part of the Ottawa Hospital and she comes to offer professional assessments and advice on how to adjust our lifestyle decisions in a way that will work better with my disabilities.] She said that she dreams of a day when community awareness of brain injuries reaches a point that people respond to brain issues the same way they respond to any other illness.

In some ways, when I think about the fog and silence around brain injury, I'm mystified. How could that happen? After all, we are the most digitally aware generation of all time so we can't blame it on access to information. We are also more knowledgeable about the pivotal role that the brain plays in every movement, conscious and subconscious decision, and even our ability to interpret and understand what we do, see or feel. So it's not because we don't value the brain. And, ultimately, we are a very empathetic generation who have accomplished huge things and are routinely giving to worthy causes.

So I started to consider the differences and the other realities in our society.


1) No one likes to be 'sick' and even fewer like to be pitied! (Keep the illness a secret)

The fact that many brain injuries are 'hidden' wounds might sometimes feel convenient because then we don't have to endure those pitying smiles and we don't have any people slowly nodding with lips pressed together - you know what I mean - the smiles that our brethren with a visible disability have to endure. Although it's incumbent upon us to advocate for ourselves, sometimes there is a blessing to just kinda blending in with the world.

However this is a true case of being careful what you wish for because the less people know about a brain injury, especially about YOUR brain injury, the less they are able to respond appropriately. How can a community rally behind an illness when those suffering cannot (or choose not to) speak up...?


2) We want to be on the team! (Act normal so they will pick your name)

Remember when your gym class needed two teams and two students were chosen to pick their team? Remember the dread as the names were called and you just hoped you wouldn't be picked last? Well, it's a hard thing not to be able to contribute to a career, a family, a household, a community in the way we used to. Many of us tend to try to push our limits. It's not a matter of ego (well, not totally) and it's not "keeping up with the Joneses," it's a just that we want to be counted among those who make a difference. We want to be picked for the team!

I wonder what would happen if we all just signed up for the brain injury awareness team. The more of us and, yes, the more athletes and stars they see, the more likely that our world might pause for a second and go "wow, brain injury is serious."


3) "Come on over!" and then "Do Not Disturb" (Use all your energy to please others when others can see and don't worry about your family)

One peril for those with brain injuries is that we will try to operate in limits we set for ourselves prior to our brain injury. Our limits even when we were "well" may not have been reasonable but here we are trying to go, go, go. I am sure those who live with us feel frustrated when they learn we've volunteered to host a family event knowing that we will collapse for a few days after they all go home.

If you have a brain injury, think about it for a second. I know you are probably feeling the way I do: "it was important to me to do it," "I felt so much better doing that" etc... but... what about your spouse or child who didn't get the energy that they count on from you in the following days? What about the strain it puts on the others in the household to all burn a little hotter so that you can accomplish a goal that might not have been necessary in the first place.

Now think about what it's doing for the awareness of brain injury. The family reunion was a great success and you seemed FANTASTIC! When they see you again in six months at Christmas you will look fantastic again. What are the chances that those family members have a high awareness of your brain injury or brain injury in general? Slim. I mean, if you can host a family get together, shouldn't you be at work? (That sounds reasonable considering that they have no idea that one potluck meal took everything out of you for days to come).


4) Symptom confusion (Withdrawal = depression)

In many cases, the brain injury patient is coping very well considering they are facing a major life changing event. We all know the stress of moving, changing jobs, death of a loved one, financial stress... well all of those challenges have repercussions on our capacity (and desire?) to keep up with a former social pace and many of those with a brain injury face several of those challenges at the same time as their brain tries to keep up.

If someone blithely skipped along and attended all the same parties and went out for dinner all the time despite being faced with major issues at home, would you think they are rational? I would not. Our first priority should always be to do a self-check. Consider how you are feeling and what is happening in your life. You might need to cut back on efforts with others to increase efforts in your private life. If you don't address some issues early, you may have a bigger problem on your hands later.

But those who are wise enough to set manageable limits and curtail social things in favour of their own rest, their spouse, kids, or household are sometimes eyed skeptically by peripheral friends as "surely suffering from depression... she hardly ever comes over anymore."  This is a sad trend because the injured person tends to have to then spend even more time mythbusting among their social circle trying to convince people that they are feeling quite well, that you've just scoped your life activities down a bit. If that has you nodding, don't be afraid... you are doing the right thing!

Perversely, the more we are 'absent' the less we are able to represent our illness in our communities and social circles... that's a sad paradox, isn't it?

[NOTE: Just make sure your spouse or roommate or someone is close enough to be able to see if you're not getting out of bed, not opening your blinds, not showering often enough. Clinical depression is serious and if you're adrift in a world of grey, you can and really should get help. In the same way that brain injury is an illness and nothing to be ashamed of, so is depression. *hugs*]


5) Charity fatigue (Come on! Cancer is way worse, suck it up and stop whining)

Consider the mail you've received in the last week. Now in your mind's eye, delete the flyers and the spam... now put in one (largest) pile your mail from banks or like, and I bet you will notice in the remaining mail, there are a bunch of charity auctions, raffles, unrequested address labels, etc all accompanied with a very compelling note about the abused animals in your community, a well that needs to be funded overseas, a new goal to find a few million to put in to a hospital or into a disease research program. It's the same for us all I suspect, and sometimes it's daunting to try and get the attention of people already sursaturated with charities.

But here is the bottom line: if you never got that envelope, you would never know about the well.

Here is some simple math. An organization mailed 200,000 envelopes. Two thirds of us just didn't even open it... now we are down to 67,000 people. Of those who did, 9/10 didn't read it all but they got the jist of it (that's about 60,000 people). And maybe a small 0.5% of those will send in a bit of money. That's still about 300 people. It can't hurt, even if it only pays for the mailout because even more important than donations is the fact those 60,000 people are aware of it. And maybe, just maybe, they are thinking "hmm... my nephew had a concussion last year in hockey" or "yeah, my daughter's car accident has changed life for many of us" or "that construction worker who fell off the scaffolding last week... I wonder if that tragedy is leaving him with a permanent brain injury?" or "Uncle Jim's stroke was so tough, especially on Aunt Joyce" or the best of all... "Wow! I had no idea!"


Take a few moments to consider what you can do to raise awareness...

Brain injured and their loved ones, consider:
- blogging (bring the monsters out into the light and let's look at them together)
- live proudly and within your limits

Anyone:
- join an organization in your community helping brain injury awareness
  (Brain Injury Association of Canada)
- scour the internet to learn a bit (from reputable sources)


And thank YOU for taking the time to read this. Yes, it counts.

Be well.

From unexpected places

Me with an exhibit I built inworld

As you may know, I have been somewhat active in an online, virtual world where I have friends from around the world and where I can exercise my creativity and socialize with adults in a way that doesn't exceed my capacity. It's been a very very helpful place.

What works about this for me is my ability to control it all. Given that I can have a seizure if I am overstimulated or tired, this virtual world allows me to manage what I see onscreen to reduce visual stimulation; turn off sounds to reduce auditory stimulation; and, when I need a break, I log off! It's that easy.

The people aren't as easy to leave, but that's another story.

As with any collection of people there are all kinds of different types... some you wish you'd never bumped into and others who change your life in a positive way. Over the years of being there, I have now learned to be more wise about the people I keep company with online.

Anyway, after much time, I am now coming into my own. My avatar is 3.5 years old now so I guess, in that world, I am maturing beyond my rebellious teenage time online. [My avatar was always an adult, but maybe the avatar operator -me- was a bit immature.]

So now I go to live music events, poetry readings, classes, lots of things that are the "real Jen." Sometimes I even go dancing or play cards with friends.

One thing I never expected was the spiritual side of this online universe. At first, when I logged in, I could leave behind my real life obligations and escape... but it wasn't long before I learned that that was a false front and it was doing a disservice to myself. It also made me start to feel a bit frustrated. I couldn't put my finger on it at the time but I was losing touch with myself in the sense that parts of me were feeling silenced and pushed off to the side.

Sadly, even my faith seemed to be left behind when I logged on. I wasn't faithless. I just got swept away by the virtual world and the freedom of trying on new lives. It's complicated and likely non-sensical to those of you who have never spent time in a virtual environment, but it's a very interesting social ... experiment (for lack of a better world).

For now, let me just say that my most recent joy was finding some kindred spirits from around the world who are also trying to actively exercise their faith and spirituality in this surreal environment. I stumbled across the place quite by accident but I have been going there on and off for more than a year now, I guess.

A photo I took inworld where we meditate

Monday to Friday there is a morning, 30-minute, silent meditation at noon (my time - which is 9AM inworld). There is another at midnight (9PM inworld). And on Sundays there is an 11pm session.

I have recently offered to help with the mornning sessions since I am available and can help without a commute! What a treat.

But the thing that is so meaningful is the people I meet and "work" with. All magnificent people who are very inclusive and quite inspirational in their own ways.

Maybe someday I will get brave enough to tell you more about it. But for now, I offer this virtual peek into a place that lets all the abled and disabled participate on equal footing.

Be well.

Slings and arrows

This morning we had planned to go see a dear one in the hospital. We had booked with him yesterday evening to see him at 10:30 am today.

I woke up and as I was starting to get dressed, I began to hear clutter in my mind, things that repeat, and I knew that was bad. My husband asked me a question but I had trouble answering him. That, of course, is a huge warning sign so I lay down in bed.

A while later, I managed to call my husband upstairs and he lay down with me and rubbed my back because I was sad and frustrated. I felt terrible to have been in that situation again. I guess I keep dreaming that it will get better. It was then 10:15. I asked my husband to call and delay our visit. He did, just saying that something came up and we've had a delay but that we're still coming.

I was so sad to not be better. That was a hard morning but the worst was yet to come.

We made a run to the person's house to grab some things he had asked for and we got to the hospital. My husband dropped me and our eldest at the door.

We got upstairs and walked in overhearing him on the phone with another loved one. He interrupted the chat saying we were here. Then they both laughed that we are late and the person on the phone said she has to invite us an hour earlier to get us there in time. Due to the fact that he is hard of hearing, the phone was set very loud and so we overheard the whole thing ourselves.

Hahahahha! Isn't that hilarious?!?

No. It isn't. I cried in the hospital and immediately explained how insensitive it is. I told him, through tears, that I had a seizure at home and that's why we're late. He cried too and was clearly ashamed. But I don't care. They should know better.

It aches that even the ones I most trust are so numb to it all.

This is me and I might NEVER change. I guess times like this help remind me to be more selective about the invitations I accept. I will never stray from my family. The rest, well ... passive-aggression is unacceptable. Even the kids (my sons who are already very sensitive, kind, compassionate young people) were pretty sad too.

I post this in the hope that someone somewhere out there will see a similar pain and not feel so alone. As I explained to the kids, part of the important wisdom is knowing when to keep distance from those who hurt you.

I look normal so maybe I make an easy target for the slings and jokes and arrows. So be it.

I remain strong and in love with God. I am alive ... so the ignorance cannot undo me.

Be well.

Watercolour Memories

Forty years ago today my parents were getting ready to exchange their vows. Hair curled, stockings on; clean cut and shaven; flowers and confetti. Oh the joy of June 9, 1973!

As time moved along babies came, loved ones passed ... and thanks to their union, here I am.

If only life really was a fairy tale. If only the bride and groom could hold each other's hand and that day's joy forever. But of course, life is only a kaleidoscope of moments because time moves on. And if the moment of their wedding had frozen there, I would not be here, nor would my brother, or my three sons.

My father often mentions how joyful he was when he became a father. I guess, nearing 40, he was thinking he might not have children. So I am sure he would say "thank God for time moving on." Babies, summers at the lake, family vacations, city council and careers served well. Yes, time moved us past many wonderful watercolour memories.

But as with day and night, ebb and flow, all of life has a balance. Dreams and nightmares.

Montfort Hospital, Ottawa

So here I sit, in a hospital, waiting for my 80 year old father while a surgeon wages unexpected war on cancer in his colon... it's hard not to wish for a happier time - one when Mom was still here.

Eventually, if you fall asleep on damp salty pillows often enough, you stop wishing for things that cannot be.

It's all about the here and now. Right now. Just absorb this moment. For better or for worse. Reach out and squeeze the hand of someone you love and thank God for the many blessings that make life's challenges more manageable.

As Mom always reminded me:
"This, too, shall pass."

Aching injuries of a Stroke

When you find out someone near you has had a stroke, you're almost always surprised... totally blown away. It seems like they were so well. How could this happen? Yesterday they were fine, today they are not-so fine.

Imagine... As surprised as you are, they are even more surprised.

One of the weirdest things about having a strong hemorrhagic stroke is that you lose time (sometimes -like in my case to accommodate a brain surgery- you lose a lot of time) and when you wake up you are the last to know where you are, what happened, etc etc. In fact, people around you are often medical staff (i.e. strangers) and even your loved ones may have to explain to you where you are more than once. Yes, after a week or two your friends are coming to terms with it but if you are the patient, you won't yet have a grip on what's happened to your body, your career, your family... your whole life.

Of course I could spend this blog post telling you about scars and paralysis and other visible challenges. I could spend the blog telling you about cognitive disabilities... but while I have your attention I am going to tell you about something more insidious, more painful, and something no doctor can see or diagnose or even test. It's the decay of friendships.

Since my stroke, I have lost quite a few of my "best" friends. At first, there was a pretty fast moving parade of people into my hospital room. This was mostly when I was unconscious so it was only my husband who would find out from a nurse who would say "So and so was by last night to see Jennifer. You know them, right?" Most he did know but some were not intimate friends (and this was while I was in the ICU). So he shut down the guest list to family and close friends.

Then I was having several visitors in the day and then more at 9:30 and 10:00 at night. It would be convenient for them on their way home from somewhere so they would pop by. The nurses would keep a distance and (somewhat ironically) suggest to me after the guest left, that maybe it was a bit late to have company since I really should sleep ... as if I had a choice in the matter. :)

But they were right and the guest list got further ratcheted down.

From the ICU, you pretty much know the drill (and if not, the timeline is posted somewhere in here) and we went from first week of September to the second week of October and then I was moved from the Civic Hospital to the rehabilitation at the Elisabeth Bruyere Hospital. In that hospital they are very very very clear that you are on a pretty intense schedule so guests are best on the weekend (sometime I will talk about the incredible intensity of that program - in a good way). Result: we're down to seeing my husband and my Dad and brother. My sons would come on the weekends and eventually I was allowed to go home for weekends to see if moving home was possible and what amount of supervision I would need.

Over the course of this period something amazing happened. Some friends sent me messages of caring and support via the Elisabeth Bruyere contact Web site (which was awesome and I stuck them on my room wall). A couple of neighbours and a couple of friends brought some meals over for my husband and kids (frozen chili, spaghetti sauce, casserole), and some sent get well cards. I was in the hospital for almost 3 months. Thank God for those people.

But on the other end of the spectrum, some wanted to get together. Wanted to catch up on the phone. Wanted to have a weekend gathering. Well I did try to do phone calls from my hospital room. I insisted. My nurses would sigh knowing how that would work. I don't even think my husband knows this... but I would have to sit in my dark room and cover my free ear and my eyes and then do a call. Mostly my Dad or brother (sometimes a friend or my husband). When the call was done the nurses would come in and medically sedate me and rub my back. I would cry. Who could know this? No one... why? Because I smiled and chatted as if everything was fine even though deep inside my brain I was in pain and scared. Bottom line: I was stupid.

Before I went home, my Social Worker taught me how to say no (and I learned that very well) and it was important for me to be able to do that before I left. I haven't truly used the phone in any meaningful way in more than two years.

But now, after my stroke, the saddest injury is to our list of friends. Amazingly a few even "unfriended" me on Facebook. In retrospect there had been unanswered email on my part. Birthday cards I didn't get out. In their mind, that must have meant 'it's over.' [writing, at this point, I sat for a while staring at the cursor blinking... half of me wanting to bawl, the other half numb].

How to proceed with the post...? On one hand I can hear some of you saying: "Who cares? What an idiot! You're better off without them!" and of course I know you are right but it still hurts, especially because these are not 'acquaintances,' they were my true friends (btw, well-educated, faithful people... no "predictable" demographic, that's for sure). I could post about how to move on with a head held high...

And if you are struggling recovering from a stroke you might be thinking "oh well, someday I will be back to normal and then I will show them" or "When I am stronger I will reach out to them and tell them how it made me feel and hug them, forgive them and we'll move on better friends than ever." But really, this post isn't about predicting a floral, foggy future... it's about the gritty here and now.

So as for the here and now, my journey has had some very painfully lonely parts where the only ones I might have let close enough were nowhere to be found. But there have also been some true friends who were persistent and understanding and patient enough to wait until I could manage a visit in person. It does tell you a lot about people.

But I'll end this post by quoting one of my favourites: Eleanor Roosevelt. It was her wisdom that shared:

"Great people talk about ideas.
Average people talk about things.
Small people talk about other people."

So I hope you saw this post for what it was, not ranting lists of names but rather sharing private and painful real events and things that affected me as a stroke patient. Maybe I can really summarize it with an idea (yeah I guess I must be aspiring to be a 'great person').

You cannot know what is in the mind of someone you care for so assume the best and don't cut all ties and feel slighted. As tough as it is for you to miss them, maybe they are missing you even more.

Be well.

Today ~ and tomorrow

I haven't posted anything in more than a year.

Why am I back? Why now?

Well I guess first I should tell you why I left. The answer is fear.

I had a person who befriended me and knew about my blog and I was worried about them knowing so much about my life. For a period of time, I even feared that their liking of me had surpassed a healthy interest. I decided it was a bit too risky to post.

Did I write in the meantime? Absolutely. I wrote in a journal at home and I have had some nice entries and over time I will add them here... which brings me to why I came back.

Reason #3: Because, as a mother of three young boys I did spend a lot of time talking to my children about bullying. One thing I taught them was that bullies really shouldn't be given enough power to "win." In many ways, that bully won when he kept me silent by scaring me. With some internal courage (and the input of a law enforcement officer who is aware of the situation), I am standing up and taking back ownership of my blog.

Reason #2: Because as a young woman recovering from a hemorrhagic stroke, I want to have a voice. I don't have a career anymore and my cognitive disabilities prevent me from re-entering the traditional 9-5 deadline-based, commuter work world. But it hasn't prevented me from thinking, feeling, or considering life and my journey. This blog helps me to leave a mark that someday may speak for me even when I can no longer. Consider this my place to etch my name in the strong bark of the world.

Reason #1: You. It seemed that lately the stars were aligned to shove me toward my blog. I have had several requests from very different people in very different parts of my life who each asked the same innocent question for their own very different reasons. One heard my voice as a fellow stroke patient. One heard my voice as an old friend from high school. One heard my voice as a comrade who also faces life's challenges from a tough illness. One heard my voice here in my blog as a way to feel connected with me and keep up with my journey. They each said: "I check often but nothing.... Will you write again?"

Dear reader,

In my first post almost three years ago, I asked you to take this journey with me. You never left but I did.

I'm sorry ...and I'm back. Please forgive me.

Sincerely, Jennifer



Be well.