brain injury, frustration, inspiration, optimism, writing

The Art of Beginning Again

Life is a funny thing. I don’t mean funny haha, I mean funny as in it being an interesting and fascinating journey.

Since my last blog entry, a lot of time has passed and if you’re wondering what kept me away, you’re not alone (I certainly was wondering what kept me away). In an effort to figure it out, I have looked into a lot of psychology texts to see what it is that keeps me away from what I want to do most.

I guess the first question, then, is ‘What do I want to do most?’

I started to write lists of things that interested me and the list included (in no particular order): having a decluttered home, purging unnecessary belongings, making more quality time with my family to enjoy each other in the everyday, walking my dog more (and longer), getting my writing really kickstarted and following through, catching up with home repairs, reaching out to others in need in my community, strengthening my journey in faith, really deeply exploring yoga and meditation, pro-actively managing my health.

I also have used new rituals/tools for household budgeting and for planning my time. But somehow, a lot of things kept falling to the bottom of the heap.

So with all of those things in a reasonable and valid list of interests, I had to face the fact that I feel anxious – intensely anxious – about the things I want to do. I feel overwhelmed and although my kids will help (with prompting) and my husband will also help with a project that he sees coming (he hates it when I suddenly spring an idea of weekend work on him), I still feel quite alone in this list.

I took some time to see what was falling farthest from the top of my list and, sadly, the writing went all the way to the bottom.

I am reading some really great books that I will share in more depth in future blog entries. Through prayer, through the books I am reading and the other influences I have sought out (motivational speakers, etc), I have come to the several conclusions that are true for me:

  1. Feeling overwhelmed creates paralysis in me
  2. Being intimidated by my “things to do” somehow makes me prone to wasting time
  3. The more public a project, the more I fear failing
  4. When I feel an imbalance in my effort and the efforts of those closest to me, I reign in my work with some twisted sense of what’s “fair”
  5. I have an over-ambitious list of things which needs pruning

There are other truths I have discovered but some are better covered when I chat about the book that helped me make the discovery.

For now, I just have to say that the beginning of June (a fresh start in a new month) made me feel like it was an opportunity to begin again. In fact, every new day is an opportunity to begin again.

That’s where this becomes a bit funny (in an ironic sense). I chose the name Begin Again for almost all of my social media presence because, ever since my stroke and brain injury, I have been on a journey of learning how to begin again over and over and over.

Fresh page, fresh start

I have made a plan to post a new blog entry every Monday starting in the coming week and I am going to be rigorous about this and do it regardless of how motivated I feel (or not), how cluttered my life or my mind are (or not), how busy my family is (or not), etc. I just am going to make it a habit and I am going to work very hard to make a routine with regard to the blogging.

Even if no one ever reads it and it’s the best thing I’ve ever written, it’s worth writing. Even if the whole world reads it and it’s the worst thing I’ve ever written, it’s worth writing.

I will count on my faith to strengthen my resolve and to trust in the unknown. One thing I know is that love and mercy are at the center of everything that matters and even though I fell off the track with my blog, I too am worth some love and mercy. So I will pick myself up, dust myself off, and Begin Again.

Be well,

Jen xo

recovery, writing

So here I am

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It’s hard to know where to start this blog post. It’s been a long time since I’ve posted and there are many reasons for my absence.  Let me fill you in on where I have been.

I’ve worked very hard to continue my stroke recovery. I do brain exercises in the form of number games to pump some cerebral iron and word games to help rebuild my vocabulary. I’ve prioritized parts of my life that need direct attention for all of us: our health, our happiness, our loved ones. Most importantly, I’ve had an important 3-year conversation with someone I’ve never even seen…

I remember a time when I was blogging quite regularly but I didn’t really know if that was what I am meant to do or where I am meant to go. Seeking meaning in life, seeking purpose, is nothing new… it’s endemic of the human condition. But the writing was (and still is) harder than it was in my pre-stroke years. Now I have to really engage and the result is that my brain gets tired and it takes a lot of my steam away from the other things that are still hard to keep up with (housekeeping, gardening, parenting, caring for an aged parent, marriage, even taking care of our dog).

With that cost, I had to take some time to say to the Lord: ‘is this where you need me?’ I have dreams and I have wishes and I did once want to be a novelist (two fiction and one non-fiction are in development) but I didn’t want to forsake all the rest – or His will – for the sole purpose of chasing a dream.

So I stopped blogging and charged up my life of faith. In the past few years, my seizures stabilized and I eventually trusted my Neurologists enough to agree that driving would help me. A couple of years ago I passed my driving test (feeling like a teenager all over again) and within one month I went to our parish and offered my services to go to the homes of those who are suffering with illness, disability, surgical recovery, or who are dying. Someday I will begin to share with you how hugely transformative that has been for me.

More recently, I was asked to serve on our parish Council so that also takes up some time; one night a week I am working with some friends to learn about Saint Faustina and about Divine Mercy, and another night a week I go in the wee hours of the morning to spend some time alone in silent, selfless, Adoration.

With those very meaningful hours feeding my soul, the homilies started to speak louder and louder to me:

Do not be afraid. Just walk and trust that the path will be made straight if the intention is pure. Just tell your story.

So here I am.

I know there are millions of people who are struggling with brain injuries, stroke recovery, parenting, and all the other things I struggle with too. I also know that the internet has a wealth of kind and loving and giving people but I have also seen a dark virtual forest filled with monsters and evil empowered by its anonymity. It is my intent to light my light and try to brighten as much of the space around me as I can. I will be using blogs, tweets, instagrams, and even YouTube *gasp* to reach out and share. And yes, someday I still do want to be officially published but for right now, this is the path I want to be on. Lots ahead… Brace yourself!

There is nothing special about me… or maybe I should have said there is everything special about me but there is no more special than the ‘everything’ that is special in you.

It’s good to be back.

Be well,

Jen

brain injury, governor general, june, recover, recovery, stroke

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.

beautifulbrain-300x288In 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.