“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.

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. I slept mostly – seizures are physically and mentally exhausting. I was scared (and I still am). Not sure what lies ahead for me but I do know that every morning when I wake up is a good start.



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

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.

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

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 :)

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 :)  )

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

Knowing, Assuming, Believing

Our minds operate in a way that makes us think we know more than we do...

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

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

• 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.

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

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

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.

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).

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.

The child inside us all

If I think back to the child I used to be... and if I am really honest... she is not that far gone.

As a child I liked to laugh, liked to play, liked to learn, liked to create, I liked to entertain others with humour or wit or performance... I liked to hug and be hugged, I liked to cuddle. I wasn't perfect then (my parents might try to tell you I was - sometimes I wish that was true...) and I am still not perfect - far from it.

All of those things are still true except now I have to pay a mortgage or fill out an(other) insurance form or take a mountain of meds, or sign permission slips.

But the child in me is the part most charmed by my sons. They are fun to play with and they are a total pain when they fight with us - then we have to put on grown-up pants and get serious! And so this morning we had to ground our eldest to his room and (being just like every generation in his family tree) he is stubborn.

Silence was the weapon he eventually resorted to.

But here was his method of communicating (this slipped out under his door for any passer by I guess...)

I remember when I was stuck in my room to clean up - I think I was 3. My Dad was going out to work but I wanted his attention. So I remember making a ringing noise (I had a small play phone in my room) and calling down the stairs to him that the phone was ringing. He had his briefcase and was tying his shoes. He asked me to please answer it - thinking that he had outsmarted me... I ran over to the phone and shouted "Hello? ... Just a second... DADDY? It's for YOU!"

I ran to the top of the stairs just in time to see him slouch over his tied shoes and shake his head, slowly putting down his briefcase and up he came.

There are reasons that these things happen. Maybe his hug really was magic, or maybe his new timing helped him miss a traffic accident, or maybe - just maybe - the fact that he and his 37-year-old daughter still smile at that memory is reason enough to come take the call.

Be well.

Jen

... oh and for the record, I did need him, so I did knock on the foot of his bed.

From the voice of a child

Yesterday, my grade three son came home from school and shared with me a plastic Easter egg. Inside he produced several symbolic objects with a story book that explained where they come from and why.

Because a picture really is 1000 words, here is what he and I scanned and labeled to share with you.

As we prepare for the long Easter weekend, we wish you a wonderful holiday with your loved ones and traditions.

Be well.

Jen

The Art of Focus

Spent some time yesterday chatting in text with a friend of mine. We were talking about the ... hmmm ... art / talent / tactic / opportunity of being distracted.

Some might say it's a mental illness - not being able to focus.
Some might say it's a tactic to procrastinate.
Some might say it's a talent to appear blameless in terms of failure to complete work but...

I think that distraction is a gift.

(hears... "what?" "come on!" "as if....!")

Yes, I think it's a gift - I think that often in life the things we set out to do are not the important things to do afterall.

We create a to do list as long as our arm... and even more.

We chase a goal... the carrot on a line that is towed before us (just out of reach, by the way)

We run and run and run and run

Then, all of a sudden, if we are lucky enough, there is a butterfly... oooooh.... it's so pretty, look at the wings, look at the antennae, look at the way it flutters and then [insert screech-to-a-halt sound effect] somewhere (or by someone) we are reminder of the task we had been sent out to do.

But here is a scenario.

The focused person is outside trying to complete some yard work. It is yard work collection week. It's important. So this person is congratulated for getting the job done as quickly as possible.

The distracted person, lacking focus, is inclined to also try and clean the garage in an effort to find the rake; is inclined to say hello to a stranger who passes by. But what is important in this chaos of moments? The "unfocused" person made a new friend, found an old pair of mittens and also recovered the rake at long last... ya, the garden still needs work but now there is a new person in their life.

Maybe the distracted person will make a positive change in the stranger's life or maybe the stranger's path makes them an important person to know (even it will take decades for that to be known).

In case you are wondering, the next time you are out running errands try to squint your eyes, unfocus your vision, and see what really becomes important in that moment. Wait and see who you will see when you are lacking focus. ;)

Be well.

Jen

I am...

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

Be well,

Jen

Staring at the fan

Well today is a busy day (most have been and I apologize for my delays). I am actually posting today from the Acquired Brain Injury rehabilitation centre and I am grateful that they have offered a way for my laptop to connect.

So I am working hard and am developing new skills to be able to cope with my challenges.

This morning was also blood work where a wise woman reminded me that every day is another step forward ... "baby steps."

On the way here this morning I very much enjoyed this song that i heard for the first time... it summarizes my plans for tomorrow (oh, that will be April Fools' Day - all the more reason to plan a slow day).

Hope you are all doing great and thank you very much for your continued messages of support.

Be well,

Jen

~*~*~*~*~*~

THE LAZY SONG

http://www.youtube.com/watch?v=3FZtN7T5PXM

Today I don't feel like doing anything
I just wanna lay in my bed
Don't feel like picking up my phone, so leave a message at the tone
'Cause today I swear I'm not doing anything

I'm gonna kick my feet up then stare at the fan
Turn the TV on, throw my hand in my pants
Nobody's gon' tell me I can't

I'll be lounging on the couch just chilling in my Snuggie
Click to MTV so they can teach me how to dougie
'Cause in my castle I'm the freaking man

Oh yes, I said it, I said it
I said it 'cause I can

Today I don't feel like doing anything
I just wanna lay in my bed
Don't feel like picking up my phone, so leave a message at the tone
'Cause today I swear I'm not doing anything
Nothing at all, nothing at all

Tomorrow I'll wake up, do some P90X
Find a really nice girl, have some really nice sex
And she's gonna scream out
This is great
(Oh my god, this is great)

Yeah, I might mess around
And get my college degree
I bet my old man will be so proud of me
But sorry pops, you'll just have to wait

Oh yes, I said it, I said it
I said it 'cause I can

Today I don't feel like doing anything
I just wanna lay in my bed
Don't feel like picking up my phone, so leave a message at the tone
'Cause today I swear I'm not doing anything

No, I ain't gonna comb my hair
'Cause I ain't going anywhere
No, no, no, no, no, no, no, no, no

I'll just strut in my birthday suit
And let everything hang loose
Yeah, yeah, yeah, yeah, yeah
Yeah, yeah, yeah, yeah, yeah, yeah

Oh, today I don't feel like doing anything
I just wanna lay in my bed
Don't feel like picking up my phone, so leave a message at the tone
'Cause today I swear I'm not doing anything

Nothing at all
Nothing at all
Nothing at all

Humility with icing

A birthday blows by and names / memories / moments / joy / agony and love all whirl around me...

No matter what has come and gone in my life I am lucky. I am here and you are here with me. I am lucky to have you and I am blesssed to have my remarkable sons, a determined husband and a wonderful family.

Every day this pixel world reminds me of this remarkable life. I live and breathe and dream and as hard as it can be I AM ALIVE!

I plan to figure out where I can find my future with this keyboard and surrounded by loved ones and friends and reaching out to every corner of the world to learn, share and experience as much as possible.

I am here

So, dear world, I stand on the rock on the top of the most challenging mountain I have been climbing yet... I feel the wind whip around me. I tip my face back - eyes closed and sun shining on me with no furrowed brow - and as the camera pulls back from my perch on top of my world the rest of the mountains come into focus and the sky's blue promise with white clouds moving so fast reminds of the larger reality beyond.

I will sit here for a while and absorb every second of this...

...and then...

...I will set my sights on the next mountain.

No matter your pace, your past, your pain, your ability, YOU are invited.

Come with me *smiles warmly*

Be well.

Jen

Memories

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

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

Be well

Jen

Azure dreams

* credits to Coldplay - song "Green Eyes" *

Honey, you are a rock
   Upon which I stand
      And I come here to talk
        I hope you understand

That green eyes, yeah the spotlight,
   shines upon you
       And how could anybody deny you?

I came here with a load
And it feels so much lighter, now I’ve met you

And honey you should know,
   that I could never go on without you
Green eyes

Honey you are the sea
   Upon which I float
      And I came here to talk
         I think you should know

That green eyes, you’re the one
  that I wanted to find
And anyone who, tried to deny you
  must be out of their mind

Cause I came here with a load
And it feels so much lighter, since I met you

Honey you should know,
  that I could never go on without you

Green eyes          ~          Green eyes

Ohoho... Ohoho... Ohoho... Ohoho...

The sea upon which I float

ђoney
уou
are
α
ℜocк
u℘on
which
ⓘ
stαn∂



Missing my Mom

Two years ago from Feb 28 I lost my Mom. More accurately, we ALL lost my Mom.

In that one day, I witnessed the most bitter loss of my life and the most liberating release of hers.

There aren't really words to say how much it hurts or how deep I feel it or acutely I miss her.

Hard to believe that she never knew me as a stroke patient. I am thankful to the Lord that He spared me from this while I was caring for her.

I would love to feel her arms around me or her hand stroking my face... but I wouldn't have kept her in that misery for any benefit.

When Mom was leaving we all gathered around her bed, we knew it was happening, and her brothers and their wives were there as well as Dad and my brother and Kirk and I. We held hands and we prayed and we waited quietly while I whispered in her ear that it was okay to let go and go Home. We promised her to take care of each other and we waited while she released her firm grasp on our hands.

I remember after she passed and the pain had stopped assaulting her, I finally was able to get back into bed with her and cuddle her after many months of not being able to hold her properly... so did my brother... and for a moment we snuggled up to our Mommy the way we always had from the first breath we took in this world.

We love you Mom!

And I have a bone to pick with you... what gives you the right to knock me off the ladder on my swift ascent to your side?!?! *smiles* Just kidding, Mom, I know it was because I was impatient and way ahead of schedule... either that or the people at this end who fixed my leak were on your side ;)

See you Mom!

Jen
xoxox....

Invisible Gag

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

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

What you may not understand is that I walk well, I have no phyical outward sign, but...

I am afraid of noise, I can't decipher sound including conversation without a visual cue. I need hours to write messages to my satisfaction and I can't read a paragraph without restarting at the beginning over and over and over. I can't always think of the right word (shape with 4 equal sides... I see it... I can draw it but I can't think of "square"). I can't remember things I have been told and I forget to take my medications. So now I wear a watch that beeps for my meds but when I am focused on something else I consciously teach myself to ignore other things (this often means I ignore the watch beep and I miss meals and the need to pee or a person trying to talk to me or whatever). I find tv commercials overwhelming and I can't read a newspaper. I am not able to drive and I am scared by the noise and crowd on the bus.  Nonetheless I have been rejected by the OCTranspo as not being handicapped enough to qualify for their assistance...

One time, at a hospital, I was told that I had the "worst" type of disability because it is the kind that no one can see. No one can believe and no one can imagine the chaos and pain and desperation inside my skull.

I am told to "get well" and that I will be "fine."

Well my "stroke" is even kind of a misnomer. Put simply, my brain bled uncontrollably and it was damaged. To save my life, they sawed into my head to recover as much as they could. The brain damage from my hemorrhage is not healed and my blood drainage in my brain is still clogged and please understand that I may never heal. Might I improve? Yes. But I might not. If I do regain former abilities thanks to the human "plastic brain," let's all just consider that a happy surprise. What is me is what is NOW.

Don't panic... but I ask you all to forget the "old Jen". She changed on Sept 8 and "new Jen" was like a phoenix who rose from the ashes and spread her wings and flew... shaky and sad but flew and flies still today... And yes, I look just like the old Jen... But I am not trying to recuperate - I am trying to walk on my new path.

My poor husband has the burden of being everyone's access to my status. Please give him a break. My husband, sons, and family are all also trying to cope with the new me... He has not left me and he has never been angry about his new wife. I guess, with the almost-result of being widowed made him want me no matter what was left of me when they closed my head.

These days Kirk carries more than his fair share so please don't add an additional burden for him.

I may have invisible disabilities but he is the one who is untreated for the trauma of his wife's sudden collapse, brain hemmorrhage and weeks of unconsciousness etc.

I was able to cope on the phone when I lived in a hospital with controlled noise and sensory stimulation. Months later, in a "real life" home and setting, my brain gets tired and I rest. Even writing my blog is draining... And after my rehabilitation days I want to just sleep - and most of the time I do (my brain knows what it needs and I love my old dented brain).

Please feel free to write but be patient for my reply. And don't panic - it doesn't mean I am lost, or depressed, or dead, or anything bad. It is a miracle that I can respond at all.

And when you see me I will look "fine" and I am better than fine... better just because I am alive.

But I have started to dislike seeing people knowing that I am being watched and evaluated and the result is "wow, she looks fine" or "I think she's better/worse/quieter/happier than I expected"

I also dislike "don't worry, you'll be fine." What does that mean? And fine to whom? And what about the traffic jam and raging forest fire in my head? Is that fine? Will it ever stop? Who knows? I don't. The medical team doesn't. So I have stopped expecting "fine" - today ... right this second ... is good enough for me.

From now on let's set a date for me to be re-inspected. February 2012. Not a minute before. And I reserve the right to withdraw that date.

I hope you can sense the frustration in my text because it is the only hope I have of sending you the message. And usually I temper myself and edit to show the happy/upbeat me. Well... today this is what I need to tell you. And if you can't imagine what I am feeling, I hope you will never have the misfortune to feel it yourself.

Ok. Now time to do some yoga, and shout out loud in my empty house, cuddle my dog, spend some mindful time, have a nap and maybe book a haircut for the first time since last spring (April? May?).

I will hate going for a hair appointment in a busy noisy salon (that I used to love) but I hate looking like an abandoned lawn even more!

Be well,
Jen

P.S. I wrote this between rehab sessions. I was in a cafeteria style room with about 12 adults. Here is my brain fatigue from its pattern chasing every sensory input:

• fan noise
• scribble a sentence
• clatter of dishes
• fix sentence
• someone's laughter
• re-read para 1
• trolley in the hall
• re-read para 1 again (did I already do that?)
• hammering somewhere nearby
• someone coughs
• a light turns off in an adjacent room
• what was I saying?
• laughter behind me
• I'm crying and I can't stand it anymore
• I cover my eyes and ears and that feels better but to write I need another hand so I remove my hand shields and I dive right back in
• someone drops something
• force myself to focus
• .... Writing ...
• yay! done!
• oh shoot! now I am late for the next session, I missed meds, I didn't eat, do I have to pee? No. Yes. Not sure but I will anyway just in case.
• I'm cold. Why? Don't know.
• darn where is my next session?
• I need to rest
• and so on...

Loyalty

Why do we love dogs?

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

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


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

Her name is Roxy!

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

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

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

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

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



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


Be well,

Jen