For administrative reasons, I've moved to an independent url. Instead of "Stroke Steps", it's reborn as "Begin Again." Please come over and subscribe to the new blog. Lots of exciting things coming! I hope you'll join me and I deeply thank you for walking with me this far on my journey.
I look forward to whatever lies ahead.
Click here to see my new home!
Be well,
Jen
Monday, 11 July 2016
Thursday, 27 June 2013
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):
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.
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.
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.
Tuesday, 25 June 2013
From unexpected places
 |
| Me with an exhibit I built inworld |
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).
 |
| A photo I took inworld where we meditate |
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.
Saturday, 22 June 2013
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.
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 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.
Sunday, 9 June 2013
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.
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."
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 |
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."
Tuesday, 21 May 2013
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.
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.
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.
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.
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.
Monday, 13 May 2013
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.
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?"
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.
Thursday, 26 April 2012
Do it Anyway
"Anyway"
[Performed by: Martina McBride]
You can spend your whole life buildin'
Somethin' from nothin'
One storm can come and blow it all away
Build it anyway
You can chase a dream
You can chase a dream
That seems so out of reach
And you know it might not ever come your way
Dream it anyway
[chorus:]
God is great, but sometimes life ain't good
[chorus:]
God is great, but sometimes life ain't good
When I pray it doesn't always turn out like I think it should
But I do it anyway
I do it anyway
This world's gone crazy and it's hard to believe
This world's gone crazy and it's hard to believe
That tomorrow will be better than today
Believe it anyway
You can love someone with all your heart
You can love someone with all your heart
For all the right reasons
And in a moment they can choose to walk away
love 'em anyway
[chorus]
You can pour your soul out singing
[chorus]
You can pour your soul out singing
A song you believe in
That tomorrow they’ll forget you ever sang
Sing it anyway
Yeah, sing it anyway
I sing, I dream, I love
Anyway
yeah
Saturday, 21 April 2012
When your hut is on fire
When your hut is on
fire
The only survivor of a shipwreck was washed up on a small,
uninhabited island. He prayed feverishly for God to rescue him. Every day he
scanned the horizon for help, but none seemed forthcoming.
Exhausted, he eventually managed to build a little hut out
of driftwood to protect himself from the elements, and to store his few
possessions.
One day, after scavenging for food, he arrived home to find
his little hut in flames, with smoke rolling up into the sky. He felt the worst
had happened and everything was lost. He was stunned with disbelief, grief, and
anger. He cried out, ‘God! How could you do this to me?’
Early the next morning he was awakened by the sound of a
ship approaching the island! It had come to rescue him!
‘How did you know I was here?’ asked the weary man of his
rescuers.
‘We saw your smoke signal,’ they replied.
[It’s easy to get discouraged when things are going bad, but
we shouldn’t lose heart, because God is at work in our lives, even in the midst
of our pain and suffering.]
+ reprinted from “The Divine
Messenger: A contact with Divine Infant Parish”
Thursday, 12 April 2012
Time to Rise
Such a season of renewal!
Spring offers so many ways to remind of the blessings of life. Watching the return of the lawn from beneath the snowy blanket; watching the busy activity of the many creatures who must be celebrating winter's withdrawal; watching the bulbs resiliently pushing their way up through warming soil... so many ways to be reminded of the opportunities in Spring.
We mustn't forget the amazing examples we have had over the course of human history to teach us about our promise as strong and determined people. Nations have recovered after terrible losses inflicted in War. People who have suffered immense challenges have chosen and fought to live and love despite their amazing struggles. Communities have rallied to re-claim their neighbourhoods and proudly walk with heads held high and backs straight and strong.
Whatever your faith, there have been amazing examples of how to live life. Examples of how to serve others, how to suffer with grace, how to be one person in a world of many, and how to leave a place better than it was when we arrived.
Since September 2010 I have been fortunate to have had time to focus on regaining my strength (both physically and emotionally). I have also grown each day closer and closer to understanding who I am, why I survived and what I am going to do next.
If I were to write you a story to talk about the challenge of this experience it would go something like this:
[ * Credit to the angel who once upon a time came to my bedside and told me *those words inside the asterisks above* when I most needed to hear them.]
Friends, worry not. You are exactly where you are meant to be at this very moment. You will know when it's time to get up and walk on.
Happy Easter to you all and I wish you a wonderful spring resurrection.
Be well,
Jen
Spring offers so many ways to remind of the blessings of life. Watching the return of the lawn from beneath the snowy blanket; watching the busy activity of the many creatures who must be celebrating winter's withdrawal; watching the bulbs resiliently pushing their way up through warming soil... so many ways to be reminded of the opportunities in Spring.
We mustn't forget the amazing examples we have had over the course of human history to teach us about our promise as strong and determined people. Nations have recovered after terrible losses inflicted in War. People who have suffered immense challenges have chosen and fought to live and love despite their amazing struggles. Communities have rallied to re-claim their neighbourhoods and proudly walk with heads held high and backs straight and strong.
Whatever your faith, there have been amazing examples of how to live life. Examples of how to serve others, how to suffer with grace, how to be one person in a world of many, and how to leave a place better than it was when we arrived.
Since September 2010 I have been fortunate to have had time to focus on regaining my strength (both physically and emotionally). I have also grown each day closer and closer to understanding who I am, why I survived and what I am going to do next.
If I were to write you a story to talk about the challenge of this experience it would go something like this:
"Once upon a time there was a small girl standing at the edge of a huge ocean... She had washed up on the beach some time ago and had rested enough to be able to stand and consider what she should do next.
She felt grateful that she had survived and felt hopeful that her life was meant to contribute something to the world - her work must not yet be done.
She looked out at the broad and vast horizon. In front of her, the horizon stretched over the ever-changing, mesmerizing blue sea as far as her eyes could see. Overwhelmed, she turned to her right. She saw the beautiful stretch of sandy beach and the beginning of land.
The strong land grew out of that beach and as she looked further right she saw that the grass and hills and mountains in the distance offered a million possible paths, each travelling toward a different part of the same horizon. She looked further and further to her right, wheeling around on her heels, feeling more desperate to find her next path.
Having made a full circle seeking an indication of where she was meant to go, she was still no further ahead.
She felt totally alone and overwhelmed by the importance of making the right decision about which direction she should choose to set out.
So she closed her eyes, breathed deeply and prayed. 'Lord, I am lost. I cannot walk on water and I cannot fly. But I will do anything you ask me to do.'
She immediately felt a warm, familiar presence. She knew He was busy, had many to help and she wanted to help Him too, so she quickly asked, 'Please Lord, tell me: Do you want me to head out over the seas? Do you want me to walk along the beach? Should I walk up into the meadow and beyond the hills?'
The Lord looked down at her with infinite patience and whispered to her His answer before He turned His attention to others... 'Yes.'
She sat there patiently hoping that there would be more guidance but none came.
The sun set and she watched the tide ebb and the beach grow and she eventually fell asleep feeling almost paralyzed with fear of not choosing the right path.
When she woke up she saw an angel sitting facing her on the sandy beach. She didn't feel the need to ask them who they are or why they were there. She knew those answers.
Letting her wake fully, the angel waited before asking her: 'Why are we still here?'
She sighed feeling like a failure and a disappointment and said 'I'm not sure - I think I'm just too afraid to make a mistake and waste the rest of my life in the wrong place.'
'Well what is it that you want to do?'
'I want to live a life to be proud of, help others who need help and leave this place better than I found it.'
Nodding, the angel asked, 'Which people and which place?'
'Anyone... everyone and anywhere I go.'
'Well if that is your goal, how can you go the wrong way?'
She looked down at the sand and smiled softly. Taking a deep breath and got up brushing sand off of herself and she set out. 'You're right,' she said.
She walked and walked and walked. The angel went with her in silence; calmly by her side. Finally she said to the angel, 'Why did God not tell me that? I had a problem and I called out to Him feeling lost and alone.'
The angel nodded again, understanding her frustration, but said, 'First of all, I think He did answer your questions and the answer to all of them was 'Yes' - I think He was sure you would go the right way.'
They continued to walk in silence. Then the angel added, *'When God solves your problems you have faith in His abilities.' She nodded. 'When He does not solve your problems I guess He has faith in your abilities.'*
She stopped walking and stared at the angel. The angel made a small wave and disappeared in a vapor on the breeze.
She took a deep breath, set her eye on the horizon and she walked on.
~ JSVM
[ * Credit to the angel who once upon a time came to my bedside and told me *those words inside the asterisks above* when I most needed to hear them.]
Friends, worry not. You are exactly where you are meant to be at this very moment. You will know when it's time to get up and walk on.
Happy Easter to you all and I wish you a wonderful spring resurrection.
Be well,
Jen
Thursday, 22 December 2011
“Perfect” Gifts
It’s hard to believe how much time has passed… or perhaps the amazing part is how fast it goes by… maybe both.
In any case, the approaching Christmas holiday is an easy time to get lost in “to do”s. For me, it’s a special year for several reasons. It has been a long time since I have felt up to the preparation for this Big Event of Christmas. In 2009, with the passing of my best friend – my Mother, I lost a lot of steam for the family traditions and cooking that would have characterized my preparations with my Mom. That was a hard year without her, the first year. Then in 2010, I had only just been released from the hospitals after my stroke and I was barely able to maintain my hygiene and my daily tasks. So that Christmas was certainly a challenge.
In any case, the approaching Christmas holiday is an easy time to get lost in “to do”s. For me, it’s a special year for several reasons. It has been a long time since I have felt up to the preparation for this Big Event of Christmas. In 2009, with the passing of my best friend – my Mother, I lost a lot of steam for the family traditions and cooking that would have characterized my preparations with my Mom. That was a hard year without her, the first year. Then in 2010, I had only just been released from the hospitals after my stroke and I was barely able to maintain my hygiene and my daily tasks. So that Christmas was certainly a challenge.
 |
| The four key To Do goals |
This year, I am able to cope with some of my old traditions so I have sent out the Christmas letter (thanks largely to the pressure and encouragement from several friends and family members). I also baked again for the first Christmas in three years. This year the motivation was to take some home baking to church for our children’s school Advent mass last week. My children treated me like a hero and were proudly munching on “the best cookies in the world.”
My husband still does have to carry an unbalanced shared task list as he is our family’s only driver so I contribute the lists of things to purchase (groceries, gifts, household stock) and he runs around the city picking kids up, dropping kids off and shopping… in fact, the shopping this year all by himself took him to the point of wearing out his card! That’s a sign for sure!
My health remains a challenge although I am finding my way to take advantage of my abilities and to respect my disabilities. I haven’t had a social engagement with friends all year. I miss my friends but I count on love and understanding for friends to be comfortable with my new situation. Visual and auditory stimulation are still a challenge and they still create fear and that results in my heart beating faster as I deal with the stress of the noises and people and my vocabulary challenges (harder to word find when I am in a social setting so I still stutter and have a cadence to my speaking that is not natural).
As for my heart beating faster, who cares? Right? Well for me it’s an issue. As you know, I still have a clot in my brain and my clot is on the drainage at the back of my head where the brain releases its “used” blood supply. We had been hoping, medically, that the clot would dissolve in the first months after my stroke and when a period of time has passed without change, it becomes more of a permanent situation. So… with only one drain instead of two, blood pressure etc have an effect. They cause me to get headaches which, I have learned, are a warning sign. Since my stroke I have had one suspected TIA and three sessions with seizures (most recently in late November).
 |
| Brain electricity |
I was told by a doctor that my brain damage (in addition to the clot) is largely permanent. Let me first say that the human brain celebrates “plasticity” (a term meant to describe how our mind can adapt and rewire and morph to recover from trauma). My brain’s plasiticity is why I have retained verbal skills at all and why I no longer cry in the car from things moving past the windows. But there was scar tissue that formed where they completed a successful brain surgery and there was some other damage from the flood of blood in my brain – these two situations have created a scenario where rapid messages (thoughts and processes) move in our brains like electric pulses for me, just like for you. Unfortunately with some of the scar tissue and damaged parts the electric pulses get misdirected, misfire, or simply get all screwed up and short circuit causing a seizure.
The last two episodes were both due to over stimulation – in both cases I was working on my computer and had recently attempted social gatherings with family. I was tired from the family gathering (one was a children’s birthday gathering and the other was a dinner with only adults and my kids – nothing huge … but still too much for me). I can feel it coming on. Typically, I am overtired from the event and then, as a seizure approaches I get confused, have trouble reading and feel frustrated because it’s like my engine suddenly starts to run out of gas.
The last seizure was in late-November when I was alone at home with the boys. It was a PD Day for them so they were laughing and playing and a TV was on in the background (I still can’t watch TV) and there was music from a computer. I was trying to do some basic things on my laptop when I started to feel the “signs.” I debated what to do because I didn’t want to alarm the boys but being home alone with them I knew they had to be told that I wasn’t well… just in case.
I walked into the room where two were playing and asked them to just be very quiet because I wasn’t feeling very good. Immediately they started to cry and crowded around me. I was trying very hard to reassure them that I would be fine but I could feel my words slipping and I have no idea what I wound up telling them but the last I remember is seeing my eldest dialling the phone.
Some time later I “woke up” (although I was not unconscious) and my house was full of the usual suspects – paramedics, police, firefighters… The boys had had the good sense to follow our plan and they called 9-1-1 , then called a neighbour since they were home alone with me, and they reached their Daddy on his cell phone. Good boys!!!
So I spent the rest of the day and that night at the Civic Hospital
 |
| These are NOT a must do |
I am posting all of this three days before Christmas to remind you that our massive “to do” list is likely unnecessary. Take some time today and tomorrow and the day after that to talk to your loved ones and to cuddle with your children. Walk your dog, take a bath or do whatever it is that makes you happy.
In this period of Advent, let’s not forget that it is a time of spiritual preparation for the most wonderful gift we could ever have been given some 2000 years ago. So when you are racing around looking for the “perfect” gift – stop and close your eyes and say thank you for all the gifts you have been given – especially the “perfect gift” whose birth we prepare to celebrate this Sunday.
Be well,
Jen
Friday, 5 August 2011
Rehearsal
So tonight we will be rehearsing the big event.
Who stands where? Who comes in first? Who is speaking? Who sits with whom?
So much to think about and so much to remember. So far, it seems we have easy parts. My husband and our sons are the ushers at the wedding and I am reading at the ceremony... after that we are off the hook :)
I will be reading the poem "Footsteps" which was one of our Mother's favourites.
One night I dreamed I was walking along the beach with the Lord. Many scenes from my life flashed across the sky.
Who stands where? Who comes in first? Who is speaking? Who sits with whom?
So much to think about and so much to remember. So far, it seems we have easy parts. My husband and our sons are the ushers at the wedding and I am reading at the ceremony... after that we are off the hook :)
I will be reading the poem "Footsteps" which was one of our Mother's favourites.
Footprints in the Sand
One night I dreamed I was walking along the beach with the Lord. Many scenes from my life flashed across the sky.In each scene I noticed footprints in the sand. Sometimes there were two sets of footprints, other times there was one only.
This bothered me because I noticed that during the low periods of my life, when I was suffering from anguish, sorrow or defeat, I could see only one set of footprints, so I said to the Lord,
“You promised me Lord, that if I followed you, you would walk with me always. But I have noticed that during the most trying periods of my life there has only been one set of footprints in the sand. Why, when I needed you most, have you not been there for me?”
The Lord replied, “The times when you have seen only one set of footprints, my child, is when I carried you.”
~ Mary Stevenson, 1936
What I hope that my brother and his bride realize is that the best rehearsal is the one we never have - the rehearsal of a terrible argument. The rehearsal of one of them being unemployed. The rehearsal of disagreeing over how to discipline children. The rehearsal of supporting a friend or family member whose needs exceed their reserve of strength, money or time.
These are the true challenges of a marriage.
We are fortunate to have a Faith that reminds us that the Lord will never leave us - His absence is only because we have left Him. Marriages are somewhat more fragile than the love of the Lord. We need to continually reaffirm our love for a spouse.
It is important to feel love often with a spouse - and our spouse needs that too... the Lord doesn't mind if the talk with Him is quiet... the Lord will still be there if we are distracted by moving to a new house or if we are busy on a trip. A spouse may be more affected!
What we need to know going into a marriage is that sometimes as we mentally replay those life images there will be only one set of footprints in the sand. Only a naive couple would think they will always walk side by side.
The first years of our lives there are many times when we walk alone with our Faith. And as time moves on, many people walk alongside us for a moment or two as we move through the journey of life. But there are times when we are on our own and we have to be strong enough to survive through those times.
The decision to marry is a tremendous and very meaningful decision. That person will walk along with us very often in our life and they will always have a key spot in our memories and our life story. But in addition to married spouses there are other very special and important people.
Our parents, our children, close family, dear friends, a special teacher, a Faith leader, a caring neighbour, an amazing person who we find in an unusual place... each of those people are important and some of them will walk with us for a long time and others for just a brief moment.
But ultimately, our footprints through life are never totally alone. And for those of you whose life I walk through, know that my prints might not appear by your side as you go - but in my heart, I walk only a few paces behind.
Be well.
Jen
Thursday, 4 August 2011
Today ~ Tomorrow ~ Always
We are in the last few days getting ready for my brother's wedding.
A very exciting time, that's for sure. With Mom passing away in February 2009 and then my stroke in September 2010 it's been a rough couple of years. My aunts and uncles and our family have all held together in this very trying time but we are OVERDUE for a reason to celebrate!
I can't wait to welcome the "new Jen" to the family - she has been a wonderful addition to my brother's world and we are delighted to be so blessed with a new branch on our family tree.
As the sister of the groom I will take advantage of my perks and share with you one of my most favourite of their engagement pictures... sigh :)
Life is an adventure for sure and no marriage is perfect. It takes work and commitment and there are moments of cloudy skies and all kinds of unpredictable challenges. But then there are days when a baby is born or one of you is hospitalized and suddenly all the reasons you married rush back into your mind and love is found under a layer of dust in the corner of the room.
I look forward to watching my brother and his amazing fiancée commit themselves to each other for the rest of time. What a wonderful reason to celebrate !!!!
A very exciting time, that's for sure. With Mom passing away in February 2009 and then my stroke in September 2010 it's been a rough couple of years. My aunts and uncles and our family have all held together in this very trying time but we are OVERDUE for a reason to celebrate!
I can't wait to welcome the "new Jen" to the family - she has been a wonderful addition to my brother's world and we are delighted to be so blessed with a new branch on our family tree.
As the sister of the groom I will take advantage of my perks and share with you one of my most favourite of their engagement pictures... sigh :)
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| Engaged to be married on Saturday, August 6, 2011 |
Life is an adventure for sure and no marriage is perfect. It takes work and commitment and there are moments of cloudy skies and all kinds of unpredictable challenges. But then there are days when a baby is born or one of you is hospitalized and suddenly all the reasons you married rush back into your mind and love is found under a layer of dust in the corner of the room.
I look forward to watching my brother and his amazing fiancée commit themselves to each other for the rest of time. What a wonderful reason to celebrate !!!!
 |
| Dennis and 'the other' Jen (my Brother and Sister-in-law to be :) ) |
Wednesday, 3 August 2011
Lazy Hazy Days
First of all I apologize for it having taken me so long to write. Summer is a busy time every year for families with young children and indeed my summer is no exception.
The boys have been enjoying the warm weather and have had a couple stints at day camps. We have also had some birthday parties to attend and have enjoyed time near the water away from the city.
But not all of the summer has been dreamy. I started this blog to keep you up to speed about the journey of a woman recovering from a massive brain hemmorrhage and surgery. My health is a work in progress. I have been able to continue to challenge myself and see people and experience more and more visual and audio stimulus. I still feel fearful and overwhelmed in busy environments and my system still responds with tears and if I am overwhelmed my mind seems to try to make me sleep.
On Sunday, July 24, I had just finished a weekend with a busy social calendar. On the Friday we had my brother and his fiancée to dinner and Saturday we drove out of town to attend our niece and nephew's birthday party (a modest family event on both occasions but still alot for me). On Sunday we drove home and that night I was on the computer and noticed that I was finding it more difficult to read.
I tried to work through it and hope that I could recover the ability to read but instead it got more difficult to read and then I was not able to type... I made eye contact with my husband across the house. After this I have no memory until I 'woke up' with about 6 uniformed men around me asking me questions and talking in hushed voices with my husband.
I am told that my husband heard a crash in the room where my 'office' is and he came in and found me slumped off my chair and having a seizure. He stayed with me until the seizure stopped and then called 911. When the emergency responders arrived I am told they asked me questions like what my name is and I answered with statements like 'I have red pajamas.'
I was taken by ambulance to the Civic Hospital where I had spent a couple months last Fall. They took me quite quickly into the Emergency Room and they did blood work and a CT scan.
What can I say? I guess my brain is not quite fixed.
This is the first seizure since the actual stroke last September so I was not expecting to live through this again. That said, I did have a TIA experience in February as well.
The Wednesday before the seizure I had had a MRI in preparation for an October appointment with my Neurologist. I believe that I had mentioned to you that the clot on the left drainage vein from my brain was still there in the March MRI. Well, the MRI on Wednesday was to check again - although my Neurologist did not expect further natural change since the clot would (should?) have already left if it was going to correct itself.
Because of my trip to the Emergency Room with my seizure, they told me about the results of my Wednesday MRI. The clot remains. Not good news but obviously I can live with it (smiles weakly).
They performed a CT scan to see if there was new bleeding in my brain as a cause for my seizure and there was not. That IS good news so hooray!
My blood work revealed that I had an extremely low level of Phosphate. They did say that it can cause seizures when it is as low as my Phosphate level was... and they asked if I had been eating because lack of food can cause the Phosphate to plummet. I had had a weekend with a very varied and fullsome diet so that was not the reason. Anyway, they put me on 4 hrs of IV Phosphate as well as requiring me to take some Rx Phosphate tablets that dissolve in water.
My husband was asked to take Monday off of work to stay with me so that I would not be left alone. He and I had both been up all night so the rest during the day on Monday was appreciated.
I had been feeling 'unwell' that weekend which I attributed to my busy schedule. What might be no big deal for most people was very tough for me. Even driving to the lake on Sat and home on Sun was alot for me because there is a lot of visual and audio stimuli on that trip.
Anyway, I wanted to take this opportunity to tell you about the new development in my health. It hasn't all be bad news by the way... I have been planning and preparing for my brother's Wedding Day!!! He and his lovely fiancee are getting married - this Saturday, August 6.
I can't wait for the day to come - our family could use the reason to get together and party.
Will give you more frequent updates as time goes by this week. Thanks for your patience and warm wishes.
Be well,
Jen
The boys have been enjoying the warm weather and have had a couple stints at day camps. We have also had some birthday parties to attend and have enjoyed time near the water away from the city.
But not all of the summer has been dreamy. I started this blog to keep you up to speed about the journey of a woman recovering from a massive brain hemmorrhage and surgery. My health is a work in progress. I have been able to continue to challenge myself and see people and experience more and more visual and audio stimulus. I still feel fearful and overwhelmed in busy environments and my system still responds with tears and if I am overwhelmed my mind seems to try to make me sleep.
On Sunday, July 24, I had just finished a weekend with a busy social calendar. On the Friday we had my brother and his fiancée to dinner and Saturday we drove out of town to attend our niece and nephew's birthday party (a modest family event on both occasions but still alot for me). On Sunday we drove home and that night I was on the computer and noticed that I was finding it more difficult to read.
I tried to work through it and hope that I could recover the ability to read but instead it got more difficult to read and then I was not able to type... I made eye contact with my husband across the house. After this I have no memory until I 'woke up' with about 6 uniformed men around me asking me questions and talking in hushed voices with my husband.
I am told that my husband heard a crash in the room where my 'office' is and he came in and found me slumped off my chair and having a seizure. He stayed with me until the seizure stopped and then called 911. When the emergency responders arrived I am told they asked me questions like what my name is and I answered with statements like 'I have red pajamas.'
I was taken by ambulance to the Civic Hospital where I had spent a couple months last Fall. They took me quite quickly into the Emergency Room and they did blood work and a CT scan.
What can I say? I guess my brain is not quite fixed.
This is the first seizure since the actual stroke last September so I was not expecting to live through this again. That said, I did have a TIA experience in February as well.
The Wednesday before the seizure I had had a MRI in preparation for an October appointment with my Neurologist. I believe that I had mentioned to you that the clot on the left drainage vein from my brain was still there in the March MRI. Well, the MRI on Wednesday was to check again - although my Neurologist did not expect further natural change since the clot would (should?) have already left if it was going to correct itself.
Because of my trip to the Emergency Room with my seizure, they told me about the results of my Wednesday MRI. The clot remains. Not good news but obviously I can live with it (smiles weakly).
They performed a CT scan to see if there was new bleeding in my brain as a cause for my seizure and there was not. That IS good news so hooray!
My blood work revealed that I had an extremely low level of Phosphate. They did say that it can cause seizures when it is as low as my Phosphate level was... and they asked if I had been eating because lack of food can cause the Phosphate to plummet. I had had a weekend with a very varied and fullsome diet so that was not the reason. Anyway, they put me on 4 hrs of IV Phosphate as well as requiring me to take some Rx Phosphate tablets that dissolve in water.
My husband was asked to take Monday off of work to stay with me so that I would not be left alone. He and I had both been up all night so the rest during the day on Monday was appreciated.
I had been feeling 'unwell' that weekend which I attributed to my busy schedule. What might be no big deal for most people was very tough for me. Even driving to the lake on Sat and home on Sun was alot for me because there is a lot of visual and audio stimuli on that trip.
Anyway, I wanted to take this opportunity to tell you about the new development in my health. It hasn't all be bad news by the way... I have been planning and preparing for my brother's Wedding Day!!! He and his lovely fiancee are getting married - this Saturday, August 6.
I can't wait for the day to come - our family could use the reason to get together and party.
Will give you more frequent updates as time goes by this week. Thanks for your patience and warm wishes.
Be well,
Jen
Sunday, 26 June 2011
Knowing, Assuming, Believing
Our minds operate in a way that makes us think we know more than we do...
Why am I talking so much about this? Good question...
This week I spent a lot of time considering a sudden and tragic loss of a family friend's young, vibrant, active wife. She died suddenly and without warning last Sunday at age 41. On that Father's Day, my friend and his two young sons were forever changed by an event that they could not have known was coming... nor did she for that matter.
Since that day, many people in their lives have had to reconsider the things that they thought they knew - what they had assumed - and what they believed. I reevaluated all of those things too.
~~~~~
I KNOW we will each end this journey of life in a way and at a time that we cannot predict. I KNOW that there are some things I would be devastated to fail to have done.
I ASSUME that my life can bring value to this planet and to others. I ASSUME that where I invest energy and time, I will be able to improve the life of someone out there; even if only in a tiny way, even if for only one person, even if just with a timely word, or with a hug or a warm smile.
I BELIEVE that a life well-lived is one step on a longer journey that extends far beyond this world. I BELIEVE that the people and experiences I have encountered were meant to be in my life with a reason.
Based on those three principles (of Knowledge, Assumption and Belief), I will live the rest of my days no matter how long or short so that I open my eyes each day as a happy surprise that I have another, fresh opportunity
Jason, if you are reading this, thank you for sharing your heart-wrenching experience with others. You are loved and supported as Lori journeys on to the next destination on her path. You and your wife were a blessing to all of us around you and your life will continue to bless many even though some days may be more challenging for you in the coming time.
Be well,
Jen
There is very little we KNOW for certain. Knowledge, in the context of what I am writing, is the sum of what is known; the body of truth, information, and principles acquired by humankind. What we can know with certainty is a relatively short list - despite the generations of people who have been studying and observing and amassing knowledge to an ever-growing compendium of human knowledge. We can KNOW, for example, that two plus two equals four. We can KNOW that gravity on Earth pulls objects toward the surface of the planet (and holds us all here).
The list of things we BELIEVE is a variable that depends entirely on your experiences, your faith, your friend group, your interests. I BELIEVE, for example, in a benevolent God who is omniscient but who is not necessarily intervening in the human experience of life. I do not KNOW that to be true ... but I BELIEVE it. I also believe that my family and friends care about heart and stroke awareness. I cannot truly know that with certainty because humans are ever-evolving, ever-changing and each is facing their own experiences from moment to moment. But I believe it because they care for someone (maybe several people) who has raised that issue to the forefront of their mind for a period of time.
Everything else in our mind is an ASSUMPTION. I ASSUME that the sun will rise tomorrow. It may not... and I cannot know the future with any certainty so I assume things will happen in a way I can predict. I ASSUME that I will have tomorrow to accomplish some things I cannot complete today. I ASSUME that people I have watched and spoken to over the years will behave in a certain, predictable way. For example, I assume that my Father will continue to be irritated by an old, tattered Candian flag... my assumption might be wrong! He may at some point forgive those who let a flag hang in a sad state or he may reprioritize his interests and care less about flags ... but I doubt it. Regardless of whether or not he changes his mind on that issue, I am ASSUMING he will continue to care about flags... I cannot KNOW it. He is a person whose feelings on issues are his and he is free to change his mind at any moment.
Why am I talking so much about this? Good question...
 |
| Lori Derbyshire ~ January 1970-June 2011 |
Since that day, many people in their lives have had to reconsider the things that they thought they knew - what they had assumed - and what they believed. I reevaluated all of those things too.
~~~~~
I KNOW we will each end this journey of life in a way and at a time that we cannot predict. I KNOW that there are some things I would be devastated to fail to have done.
I ASSUME that my life can bring value to this planet and to others. I ASSUME that where I invest energy and time, I will be able to improve the life of someone out there; even if only in a tiny way, even if for only one person, even if just with a timely word, or with a hug or a warm smile.
I BELIEVE that a life well-lived is one step on a longer journey that extends far beyond this world. I BELIEVE that the people and experiences I have encountered were meant to be in my life with a reason.
Based on those three principles (of Knowledge, Assumption and Belief), I will live the rest of my days no matter how long or short so that I open my eyes each day as a happy surprise that I have another, fresh opportunity
- to do the things I KNOW I want to do...
- to accomplish something that day, no matter how small, which I ASSUME will bring value to others... and
- to quietly and humbly pay attention to the people and experiences I BELIEVE I was meant to see and meet.
Imagine if we all paid attention to the life of those around us.
Be well,
Jen
Monday, 20 June 2011
Celebrating Life
I hope that you passed a lovely Father's Day celebrating those who have made an impact on your life.
We did our best to spoil the Daddy in our household and his Daddy and my Daddy. At a time like this we are mindful of how fortunate we are to have them in our life.
As life is an unpredictable journey we were taken in a different direction yesterday as we considered others whose Father's Days were perhaps more of a challenge. There are many people who have reason for sadness even on days of celebration. A year or so ago, one of our sons' friends' Daddy died in his 30s of brain cancer. Those little boys must have suffered yesterday and we were praying for them...
...but later that day we were informed of very sad news and the sudden passing of a dear family friend. On the morning of Father's Day a very young woman - wife, daughter, sister, and mother of two - passed suddenly. My thoughts were with that family all day long and I am so aware of their pain. So close to our journey.
I can only pray and hope that the grieving family, especially Jason, her loving husband, and their two little boys (Thomas-Jay and Burke) will find some solace in their shared memories over the years and that they will be gently comforted by the passing of time.
http://yourlifemoments.ca/sitepages/obituary.asp?oId=508648
This post is to share with you what is on my mind and also to hopefully remind you that for all of us every day is a blessing.
I hope you will take an extra moment today to love the people in your life.
LIVE and LOVE OUT LOUD!!!!
Be well,
Jen
We did our best to spoil the Daddy in our household and his Daddy and my Daddy. At a time like this we are mindful of how fortunate we are to have them in our life.
As life is an unpredictable journey we were taken in a different direction yesterday as we considered others whose Father's Days were perhaps more of a challenge. There are many people who have reason for sadness even on days of celebration. A year or so ago, one of our sons' friends' Daddy died in his 30s of brain cancer. Those little boys must have suffered yesterday and we were praying for them...
...but later that day we were informed of very sad news and the sudden passing of a dear family friend. On the morning of Father's Day a very young woman - wife, daughter, sister, and mother of two - passed suddenly. My thoughts were with that family all day long and I am so aware of their pain. So close to our journey.
I can only pray and hope that the grieving family, especially Jason, her loving husband, and their two little boys (Thomas-Jay and Burke) will find some solace in their shared memories over the years and that they will be gently comforted by the passing of time.
http://yourlifemoments.ca/sitepages/obituary.asp?oId=508648
This post is to share with you what is on my mind and also to hopefully remind you that for all of us every day is a blessing.
I hope you will take an extra moment today to love the people in your life.
LIVE and LOVE OUT LOUD!!!!
Be well,
Jen
Tuesday, 14 June 2011
Patience
I stand still and watch and listen
I cannot fake being able to keep up with the pace of life
Well... maybe I can fake it but it only raises expectations
So I choose not to
I hear a piano being played in the distance
I try to manage a phone call or two a week
Sadly it's mostly to get my new Warfarin dosages or to talk to insurance companies
I need them more than they need me
In comes a wave and a breeze blows across my face
I manage some of the household chores, so does my husband
My sons earn assistance points all the time by doing a chore
(some they do with my grumpy face pushing them)
I notice a lovely Cardinal on the bird feeder in the backyard
Friends and family each only ask for one visit - one chat - one gathering
Soon they add up to daily
I can't manage that in addition to my own obligations for my kids, so I don't
My dog's soft black fur feels lovely against my foot where she is cuddled up
I have at least one medical appointment every week
Blood tests are a nearly constant event
Usually another medical appointment every couple weeks
I hear chirping and a plane humming overhead
I watched tv once in the past 8 months
I watched the royal wedding - why not watch a girl becom a princess?
Occurred to me often that his mom was missing... I hope when it's my sons' turn I am not missing
Warm sunshine on my face makes me instinctively turn my face toward the heat and close my eyes
Music still brings me joy
Headphones blocking everything else bring me even more joy
But the best of all is my sons in my arms loving me and me loving them
A butterfly lands on my window sill - just like she promised she would
I smile at her
Her wings beat slowly
And then she is gone
Patience
Was worth the wait to see her if only for a moment
It really is a virtue
Be well.
Jen
For those of you who have discussed and speculated that my absence is about "you" and why am i mad and blah blah blah blah...
... that is the only incentive i need never to be back in that game.
I hope every other stroke patient reading this also has the strength to walk away from those selfish people.
I cannot fake being able to keep up with the pace of life
Well... maybe I can fake it but it only raises expectations
So I choose not to
I hear a piano being played in the distance
I try to manage a phone call or two a week
Sadly it's mostly to get my new Warfarin dosages or to talk to insurance companies
I need them more than they need me
In comes a wave and a breeze blows across my face
I manage some of the household chores, so does my husband
My sons earn assistance points all the time by doing a chore
(some they do with my grumpy face pushing them)
I notice a lovely Cardinal on the bird feeder in the backyard
Friends and family each only ask for one visit - one chat - one gathering
Soon they add up to daily
I can't manage that in addition to my own obligations for my kids, so I don't
My dog's soft black fur feels lovely against my foot where she is cuddled up
I have at least one medical appointment every week
Blood tests are a nearly constant event
Usually another medical appointment every couple weeks
I hear chirping and a plane humming overhead
I watched tv once in the past 8 months
I watched the royal wedding - why not watch a girl becom a princess?
Occurred to me often that his mom was missing... I hope when it's my sons' turn I am not missing
Warm sunshine on my face makes me instinctively turn my face toward the heat and close my eyes
Music still brings me joy
Headphones blocking everything else bring me even more joy
But the best of all is my sons in my arms loving me and me loving them
A butterfly lands on my window sill - just like she promised she would
I smile at her
Her wings beat slowly
And then she is gone
Patience
Was worth the wait to see her if only for a moment
It really is a virtue
Be well.
Jen
For those of you who have discussed and speculated that my absence is about "you" and why am i mad and blah blah blah blah...
... that is the only incentive i need never to be back in that game.
I hope every other stroke patient reading this also has the strength to walk away from those selfish people.
Saturday, 30 April 2011
Wounds that heal
In case I forget how far I have come...
This is from when i was well enough to have asked for my BlackBerry and to have remembered how to use it...
These were in October 2010. The bleeding stopped about a week ago (April 2011).
This is from when i was well enough to have asked for my BlackBerry and to have remembered how to use it...
These were in October 2010. The bleeding stopped about a week ago (April 2011).
I still have massive scars in my hair - sometimes I wish they weren't so well hidden. I wish they were across my face so that people couldn't forget that I am recovering from a brain hemorrhage and a very immense brain surgery. But I know that it's a blessing not to be left with that too (but imagine having high expectations of a person in a wheelchair... we might change our expectations then I think).
Since then I have had one experience they call a TIA (Transient Ischemic Attack) which is likely a clot passing and briefly stopping in a vein/artery in the brain. It lasted about an hour with only a couple of the famous five warning signs (I had trouble speaking and understanding). It was scary but it passed - this was late Feb.
I have tried not to talk about it and not to dwell on it but it's part of who I am so I am sharing that with you.
If you are wondering about why I never call you - please don't forget that I am disabled (particularly with regard to sound and with visual stimulation).
I guess the choices are to love me anyway and be quiet or to be insulted and leave.
Either way I understand and I will still love you.
Be well,
Jen
P.S. This entry was called "wounds that heal" because there are some that never entirely heal.
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