Head Injury Survivor

God Bless the Child.....

 ... one of my greatest joys is the pleasure of my Grandson's company!  At the time I acquired my Head Injury in 2003, Grant was just past his first birthday.  I didn't get a chance to see him or be around him much the first 2 years post TBI as he lived in another Province... and I was busy with my recovery.

However as I started to visit with my Daughter and her Family, I discovered one of the most valuable Members of my entire Recovery Team... my grandson.

Not only did I learn how to "play" again... I discovered the world of imagination! Some days when we awoke the theme for the entire day would be a safari... and as we ventured out to the backyard, we would travel from Africa after feeding giraffes & monkeys... over to Ausralia to pet kangaroos. It didn't matter if we stayed in pajama's all day or got our special play clothes on to fit the adventure.... and anyone who entered the yard  had to wave at us as we sailed across the ocean in our boats (pools, buckets whatever was handy)... or join us as we ate lunch with koala bears. If we had a nap, it was to refresh ourselves for the next adventure and as the day turned to evening we would head back to our plane or train or boat and drift off to sleep thinking of what great adventure the next day would bring.

I learned to giggle because it was funny to giggle, that crying was okay if you are feeling sad and that children are much kinder and thoughtful than we give them credit for. Wet sand between your toes is "yucky" but dry sand between your toes can tickle... when you are playing make-believe everyone is equal and everyone can win... and sometimes the smallest little arms can give you the biggest warmest hugs!

As time went by, and I was struggling to relearn the Alphabet, Grant taught me the Alphabet Song he had just learned. To this day... I can sing the alphabet correctly but can not say it without error! When I couldn't fugure out how to put a DVD in for him to watch.. he simply replied "that's okay Gramma, I will show you how" (and did). Although I try not to let Grant know if I am having a headache or if I am a bit muddled, this little darling just seems to know and he response is always "don't worry Gramma, I will help you..."  When I got brave enough to leave my daughters yard , it was my grandson that took me by the hand and showed me how to get to the store and back.

I was used to using landmarks by then to try to remember my way around, so we ventured to the store as Spiderman and his trusted assistant (me). The City had sprayed blue paint on the sidewalk to mark watermains or somthing... so naturally those became our "secret spider man directions & secret codes". So we followed them to the store finding them each 1/2 block or so... and then all the way home again.  A very grand adventure for both of us! On a footnote: Grant was wearing his spiderman outfit and when he held open the door at the store for an elderly couple, the lady said "Thank You Spiderman"... to which Grant replied "this is only a costume you know!"  (heaven forbid he be mistaken for the real thing!)

The little man is now in kindergarten and learning so many more things. My greatest joy is that he continues to share all he learns with me... I moved here to be close to my Daughter and her family... and of course my most valuable Recovery Team Member.

Grant makes my heart smile, and lifts my spirits when I am down. He gives me the courage to try new things... for his world is always growing and expanding too. He makes me laugh out loud... and feel so very alive. He makes me feel safe... and he makes me feel special.

I can't help but wonder if he knows HE is the teacher in this relationship? 

Domestic Godness???

Okay... I will admit it up front... I have NEVER been a Domestic Godness, Suzie Homemaker, or Martha Stewart wannabe! In fact, prior to the head-injury, I worked 24/7 and enjoyed being a Professional Woman, Community Volunteer and wander the globe a bit.

In fact, when the Occupational Therapist was coming to my home weekly, I had to learn allot of household tasks over and wasn't too thrilled at all. I may not remember everything prior to the TBI, but I do remember we had a maid service at one time!! (mind you, prior to the TBI ... I also had an 18 year marriage that disappeared during recovery as well!  Ooops... different entry topic... lets get back to basics)

Despite my initial reluctance to it, I knew I had to learn & re-learn alot of tasks if I wanted to be able to live "independantly" in this world.  Since the TBI I have also acquired a bit of an obsession with things being in their proper place (and heaven help the person that moves them!) I started out with a set of coloured recipe cards to get my life/days in order.

Yellow cards - medications      Red cards - household tasks written out in steps    Blue cards - Telephone messages or call to make      Purple cards - things I would jot down to ask the Doctor or Therapists

I had a Red card on a magnet : one side said "laundry started", other side said "laundry completed". If you have ever left a load of washed clothes in the washer for a few days... you will know why I made THAT card up. I have a card posted on the inside of the front door which says "have you taken your meds" so I don't leave home without them. Over time, actually a very long time, all I needed to see was the colour of the card to remind me of various tasks or thoughts or questions I had.

And TIMERS! I have timers that I use for many things. I have one for cooking which goes off 10 minutes before food ready , so I can get back on task, and then again 5 minutes before it is ready so I can get plates & utensils out etc... then when complete.

I have a timer by the computer, I tend to get involved with emails, webpages etc... but too much time on here can ignite a headache if I am tired... so I time-out for breaks. If I have an appointment I will usually set a timer to remind me to get ready, if I don't I may be too engrossed in somthing else or just plain forget to go some days (not always... but better safe than sorry)

However my true saving grace in the land of Domestic Must-Do's is a book I discovered early in my recovery entitled: Home Ec For The Domestcically Challenged authored by Peter Wright.

This book is a MUST for anyone, bachelors, new housewifes, old housewifes, single parents.... anybody that has to manage a home. The contents cover everything from Fridge Management, How to shop like a Mother, What Does What, Budgeting, Stuff To Clean With, Meal Planning and even has some very easy to learn recipes that are great!!  Everything is broken down into very easy to read and understand steps... even to washing your hands at the beginning of each recipe. There is a gentle mix of humour, and definitions of any cooking or cleaning term you can imagine... in words even I could understand!

I even purchased the brand of Iron he recommended and ironing board as well.  Speaking of which, one sunny day I decided to try my hand at ironing some blouses I had. No worries, I had the right equipment, I remembered to put water in the iron and set it on a steam setting, the iron board was up correctly and not tippy,I turned off the Tv & radio so I wouldn't be distracted, all systems were a "go". So I started ironing. Completed the first item quite well, actually very indeed... and started the second item. Then the telephone rang....

I was so engrossed with the task at hand, the ringing actually startled me, I bumped the ironing board, knocked the iron onto the floor and ran to grab the telephone! I can't recall who the caller was, I simply told them I was busy and to call back. By the time I got back to my task... the iron had burned the carpet! As I lifted back to the board I recall thinking that it was a PERFECT imprint of the iron! Then I wept as I realized the gunk burned onto the iron (carpet material) would probably never come off so I had to budget for another darn iron!

Now I had to think through the task and the end result and see if I could figure out where I went wrong so I would do better the next time around... what could I do different:

(a) turn off the ringer on the phone before starting to iron   (b) iron in the kitchen... no... I would burn the floor  (c) only iron when someone was at the house ... wouldn't that be kinda rude?  (d) buy only permapress, give away the ironing board & don't replace the iron

No surprize ending here... I may have mastered alot of household tasks so I could live on my own, but I did give away the ironing board, bought a throw rug to cover the burn in the carpet, and take my ironing out for someone else to do!

Freedom Dreams...

Like the wind through the willows,

Those were her dreams....

Gently swaying, ever caressing

She is dreaming and she is at peace.

Her reality is different

Paranoia strikes like slivered glass.....

She is frightened and she is crying

Emmancipate her with her dreams

Copyright 2003 Nancy Jean Perry

Awakenings.... Somehow

I don't know when I wrote this, I found it amongst my files this morning and it reminded me that I still discover new things.... somehow:

What Is Happening Now...

I am picking up on little things now , like how I can put my thoughts and words on paper..... but not through my mouth somehow

I tremble when I am nervous or scared, but I realize now that I tremble when I am tired as well.....  I can't explain why but it is always the right side somehow

I know now why I do not answer the phone, I may not find the words to say if it is one of my children.... and shouldn't a Mom hold the answers to their questions somehow

I don't speak to the neighbours and hide when I can, can't remember their names or conversations.... and can't find a way to explain it somehow

My Physiotherapist hugged me today, it is my first hug since the accident and it felt good.... I guess I let my gaurd down a little bit today somehow          

I have these headaches but fewer pain pills I take, Perhaps knowing that a naps help ease the pain or take them away... knowing maybe it is my brain saying it is time to shutdown somehow

I may not know all the answers yet, but I am still very very proud ... that I have started to notice all these awakenings ......somehow                                                               

...a thought...

Do not dwell in the past, do not dream of the future, concentrate the mind on the present moment."-- Budda

.. on the Lighter Side of life....

... why is it when you just want to do a mindless but necessary task... that there is always someone around to interupt your moment!!

Today I was sweeping the light snowfall from the sidewalk at the front of my home. Nothing serious, nothing too earth shattering... just chilling out (pardon the pun) and letting my mind wander.  Then the dreaded interloper appears...!

"so.. you are clearing your walkway...eh?" declares the Interloper

(in my head I say: nope... just cleaning the broom with fresh snow)

"yes.." is my audible reply

"is it cold enough for you?" he asks

(in my head:  hell no... I love a good case of frostbite!)

"indeed it is" is my audible reply

"so do you think we will get much more snow this year?" he asks

(in my head: do I look like a weatherman? a physic? who cares!)

"I really don't know" my audible reply  ... and now I am sweeping MUCH faster

" the Farmers Almanac says it will be a short winter" he states

(in my head: so why don't you look up how much more snow we will get!!)

"oh..." my audible response

"yep... and a hotter summer" he continues

(in my head: I better finish this before he gives me the reviews for all seasons)

"oh...": my audible response

"probably not as hot as last summer, but still hot. Not as much rainfall predicted either."

(in my head: does this guy have a weather fetish? )

"oh..." my audible response, and then I declare "well that's it, I am finished until the next snow fall" and I head towards my door. "Nice chatting with you"...(I lie)

"hey, me too" he states "see ya next time"

(in my head: next time? what next time?... then I ask the question I think I know the answer to)

"you live in the neighbourhood?" I ask tentatively

"hell yeah" he states ever so proudly "right there" as he points directly across the street

(and then to my horror he adds)

"we'll being seeing allot of each other new neighbour! Ya gotta come over and meet the wife soon, she said you are home most of the time so you should come over for coffee" 

(in my head: great... just great... I bought a house across from Mr & Mrs Nosy Neighbour)

"oh.. Thanks.. I will keep that in mind. Bye for now" my audible response

... but as I entered the house I couldn't help thinking of the song from the kids show "Mr.Rogers"... you know the one... "We are the people in your Neighbourhood...in your neighbourhood...in your neighbourhood....blah blah blah... and won't you be my neighbour!

NOTE TO SELF: hire that school kid to clean the walkways!

The Headache.... and the pain goes on...

... the Headache!

There are days when even the smallest ray of sunlight in the room, can torment me to no end.  The softest sounds penetrate my brain like a jackhammer.  No pillow is soft enough, no position is comfortable enough. No minute is short enough as the time drags by. I do my best to avoid these headaches; I nap everyday (well almost everyday); I try to avoid stressful situations; avoid crowded and noisy places; take my mediciation faithfully every day....

Yet there are days when the headache attacks and hangs on to torment me. Occassionally the headache will stay for more than one day, and on those occasions I feel I will die before it ever passes. It wears me down physically, emotionally & spiritually. I feel defeated by the pain, for while it is present, it controls me and my being.

I have struggled with how to deal with these headaches since the TBI in 2003. Initially, without question, I accepted medication to treat the headaches.  I wasn't functioning very well in other areas and my denial and grief over various losses...  made the "zoning out" and "disappearing" into an abyss for awhile quite appealing in fact.

However as I moved through the various stages of recovery and therapy, both pyshical and mental, I needed to clear my head, discover exactly what the TBI was causing vs the numerous medications I was on.  Naturally, I was hoping that once I was off the medications or had them at reduced to "maintenance" levels, I would be back to normal.

As the medications decreased, the Psychological and Behavioural therapies increased. I was facing my new reality ... BUT... I did have more clarity! I learned realaxtion techniques, practiced ways to reduce stress in my life and noted situations that may ingnite the dreaded headaches. I learned to take naps when my brain was tired, not just my body.  And I am confident that the skills I acquired and practice DO reduce the frequency of these headaches... but I am also convinced I will never be totally free of them.

So it time once again to look at ways of managing the pain.  I am certainly open to any comments or suggestions any of you may have as I try to discover how to survive these dreaded headaches!!

Sharing Info & Great Webpages

Every now & then you run across some really informative Webpages and/or Resources.

As I discover new ones, I will be posting their links on the left side of this page. I hope that as you visited these websites you find them informative, helpful and in some cases enlightening or inspirational.

I came across one this evening that I would highly recommend to everyone: http://www.sossisson.com/blog/blog-home.html

Grief...

Merriam-Webster Student Dictionary defines "GRIEF" :  deep and poignant distress caused by or as if by bereavement; also : a cause of such suffering

... it goes on to say that GRIEF and SORROW are simular and describes SORROW to be: 1.(a) deep distress, sadness, or regret especially for the loss of someone or something loved (b) resultant unhappy or unpleasant state (to their great sorrow they could not marry)   2: a cause of grief or sadness     3: a display of grief or sadness

This past year I learned what Grief & Sorrow felt like to me when in March my wonderful nephew Todd passed away at age 27.  Grief & Sorrow struck again just days before Christmas when my older sister Pat passed away in Decemberat age 54.

These were the most difficult events since my Head Injury... and I was terrified that I would not, or could not survive these heartbreaking losses.  Initially when I learned we were losing Todd... my thoughts were so self-centered and became disabling:

How would I cope? Will I be too "muddled"? I can't do this! What if I get depressed again? Will the nightmares come back?  What if I can't find the words or say somthing wrong? What if they have to increase my medications again? I can't do this!!...

I was so very terrified that I began getting "muddled" and word-finding was an enormous task... I wasn't sleeping well, forgetting to eat, couldn''t complete even the simplest tasks without experiencing anxiety and panic attacks.  My daughter kept telling me I was going to be "okay", she would help me through it, my Fiance was excellent at calming me down and talking me through alot of the anxiety and fears.

But it wasn't until I pulled out my "tool box" of books, CD's, video sessions, work books, memo cards.. everything I used following the TBI ... that I truly began to believe I was going to make it through these difficult times.  I think that it was then that I realized that all the therapy and re-learning that took place after the accident, was not a one-shot fix... but a lifetime committment to ensuring my wellness and ability to function to best of my ability. 

My "tool box" took on new meaning, it is to Me what insulin is to a Diabetic. I have to be aware and be ready to put these tools to work to survive. I had to get back to a healthy functioning state to be able to cope with the death of a loved one so dear to my heart.

I also had to learn "how" to grieve, healthy grieving... I learned it was okay to cry and have depressive thoughts, I learned that I would not tumble back into that pit of severe depression if I allowed myself to grieve and share my grief. I could experience the pain & sorrow without letting the pain overcome me.... I managed to make it through Todd's funeral and the Family gathering that followed , yes... I did get muddled up and couldn't remember names... speech was difficult and word finding was a task.. but I survived and worked on regaining those temporary deficits.

In December, when my sister Pat passed away, it was even harder than I thought it would be. I don't remember much of the day Pat was laid to rest. I don't remember who I spoke to or if I spoke at all, I do know that following the service my daughter took me back to the Hotel room and I fell into a deep sleep.  We flew home that night.  However, I knew it would be harder so with my daughters help, I made sure I did what I needed to do to make it. We flew into London the night before the service and then left the next evening. I knew I could not be around large groups, I knew I needed a very quiet retreat so booked a hotel room instead of staying with Family. I also knew I had to be in my own secure enviroment to grieve. I had meals planned and people with me at meal times, I napped when I needed to and cried when I needed to. The sooner I could get back into my comfortable routine, the sooner I could deal with the grief in a healthy way.

Following the TBI, I experience PSTD: Post Traumatic Stress Disorder and the depression was overwhelming. the grief over the losses incurred by the TBI... almost destroyed me. One of my Therapists told me last year tthat for the first 3 - 6 months my Team was doing Triage... just trying to keep me alive... not due to physical ailmets/injuries... but  due to the severe depression. I honestly don't remember what THAT grief felt like, although I know I did grieve. The pain & the sorrow were so real at the time I really did believe they would consume my body & soul.

Now as I grieve for the loss of Todd & Pat, I experience the grief and let myself feel the bouts of sorrow at their passing. However, there is a gentle mix of warmth and yes... even joy... when I recall the wonderful experiences we shared, funny events, the wonderful love that flowed so easily. I feel blessed to have been a part of their lives and had a place in their hearts.

If someone was to ask me to define Grief & Sorrow I would say: Grief is that tug at your heart to let you know and experience the loss of someone or somthing that you cherished and/or valued greatly. Grief doesn't just tug at your heart to signal tears of sadness or sad thoughts, it also triggers those memories locked away that allow you smile and share your heartfelt thoughts with others.  Those who grief deeply may state their heart was "ripped out"... but I assure you, it will be there filled with the good thoughts & memories as well when you are ready. Sorrow is is the deep anguish we sense or feel with the loss. Sorrow runs deep in our hearts and it is that feeling that seems to fill the void we mistakenly think is left by the loss.  I believe we have to experience the sorrow to release it, and then to discover that there really is no void in our Heart...  we have filled it with even more love & memories for those we lost.

Grieving.....

Todd Pierini.... my Nephew & my Hero

Todd passed away March 2007