My Journey with ABI
My name is Judy Johnston and my ABI story begins seven years ago. When it happened I had spent most of my adult life as Judith A. Johnston, a professional, a Licensed Employee Benefits Consultant and Vice President of a Life Insurance Brokerage. It took many weeks of being in hospital before I came to understand that I had been a victim of a car crash. The injuries I sustained have left me with Acquired Brain Injury, impaired vision, recurring back and neck issues, loss of hearing, the loss of my sense of smell and balance issues.
It has been, and continues to be, a long journey to recovery, but I now call myself a survivor of a life altering event. Inside I am still that Judith Ann Johnston I was before the accident, and I am grateful for her qualities and strengths that have come through as I slowly make my way down this road I call my “New Normal”.
How do we help ourselves to keep “virtually” in touch with others
These are difficult times for each and every one of us. Suffering the limitations a brain injury causes too many of us, compounded by this virulent Covid-19 epidemic, can make the outside world seem as if it is contracting our space even further. It can make us feel we just want to pull up inside ourselves and cocoon until this episode in history has slithered back into hiding.
Much too quickly I have had to learn that not dealing with the turbulence this is causing my family, friends, neighbours, therapists, PSW’s and rehab providers… essentially every one in each of our circles, can cause new challenges and struggles. You can’t wish it away. So how do we continue to move forward in this life’s journey with ABI?
It has been a process, but the benefits have been immeasurable. As my in-house support network of PSW’s, RSW’s and Therapists began to exit my physical life, due to social distancing, I became moody. Fatigue attacked me with a vengeance as I tried to do many of the daily household tasks that, in support of me, others had been managing.
And then my days began to get better…
The first positive action I took was to work with my Yoga Instructor in setting up two hourly sessions each week. At that initial live virtual FaceTime session, my eyes were immediately opened to my new reality. A reality that I could have some control in. Once again I felt grounded, focused, and was able to add some much needed structure into my days. One by one I began to schedule times with my OT, Speech Language Pathologist, Social Worker, and Rehab Support Worker. Yesterday I attended an ABI group meeting using Zoom. It was good to see that we were all making efforts to temper the proverbial storm.
My speaking date at the Brain Injury Canada-Ottawa Conference has been moved to the fall. Today I will be recording my speech to the U of T graduating SLP’s for their last virtual class. This coming week I look forward to restarting my art classes with my art teacher via the internet. I am still thinking about upping my physical exercise to include walking and recumbent biking. It will come.
Throughout this experience I continue to talk to my best friend at least every other day. I have friends and family I text or email. One of my brothers has started sending me pictures and text messages. My sister and husband continue to pick up my slack when I become “Brain Tired”. Yes we need to remain in place, in our homes, in order to safely wait for the world’s return to a different but better “new” normal. That day will come and we will all be better persons for it.
Today is a better Day!
Inspite of the ongoing and tragic impact the covid-19 virus is having on each and every one of us, it is important to be open ito accepting and celebrating those seemingly little things in life that continue to pull us back towards normalcy.
Today has been that day for me. The Spring Edition of HOPE Magazine is now out and online and there, on page 17, is my article about “Our Creativity is Waiting to Re-Emerge”. Writing has been a way to put my struggles, challenges and successes into perspective. It also provides me with a historical measurement of time and events as I continue my journey along this new pathway.
I hope you will find something today that brings a smile to your face and warmth in your heart.
And then there are days when even I can’t face those obstacles
Throughout this six year journey of trying to find ‘myself’, it has not been without struggle as I find myself coming face to face with this new “other”person I have become. In many ways the obstacles I have faced as an ABI survivor often cause me to feel lost, no longer maintaining that important sense of self worth of who I am and the value I have within society. Those essences of “ME”, easily and quickly disappear when I stumble, trip or am confronted with an obstacle, in this, my life’s journey towards recovery.
In that car accident my life changed in an instant. It didn’t ask my permission, I was not given an alternative option, or an agenda in how it would complicate my life, it happened and so I must learn to live with the consequences. As a result, when obstacles rise up before me, making me fall off kilter, often feeling that I have lost my value as a human being, and a feeling of diminished ability in being a partner to my husband, no longer being able to exercise my previous role as the matriarch of a large extended family, and to have lost that easy going camaraderie I had with so many friends and colleagues and people who were my clients.
Today I was faced with a double sided coin. I had the best news possible, an article I had written will be published in a magazine called HOPE. Then, on the flip side, an hour later, the other proverbial shoe dropped as I learned the Insurer was again requesting another Independent Examination, in my view a misnomer, by denying continuing my Speech Therapy until the need has been reassessed. My experience with these last assessments have been flawed.
I am wallowing in my despair, in my sadness, my continued inability to control my environment. I understand that my different therapy sessions are continually under review and their frequency changed or limited as I progress forward. What I want the people who decide these things to know about “ME” is that I am not a quitter, to please come to understand the value I place on becoming and continuing, in some way, productive and creative in ways to replace what I so unexpectedly lost, my pre-accident quality of life, my love of my job and relationships, travel without having to have a caregiver to make sure I am physically safe. I have lost my freedom to meet life’s challenges head on in a humanizing way.
As I sit here there is a side of me that knows the light will shine once again, I know that, and the pain and anxiety will ease and I can again breathe. But at this moment it is dark out.
A Day, A Week, A Month… we do make it through!
We have all had them. A difficult day, week, month, that is challenging, a downer, an obstacle that we are unable to make our way through. Mine was this past month of December.
It was a month filled with challenges, obstacles, not feeling well both mentally and physically. No different than what I experienced in my life prior to my ABI. But now I am living with the ramifications of an ABI, the steps to move forward can be like walking in quick setting cement.
December was filled with a negatively impactful Independent Exam ordered by the Insurer, often a misnomer to call it an independent third party but I will not say any more. I had a serious fall, got a cold, endured the headaches from a constantly changing weather pressure system, wrapping gifts (and, yes, by tradition, I also wrap all the gifts for our stockings), cooking our Christmas Turkey, and finally recovering from all the associated activities of the holidays.
Today I am on the other side of that difficult month. It is a new year, literally and figuratively, and I am feeling calmer and more grounded than I did a week ago. In the clarity of a new day I am able to see that those things that depressed and saddened me, that made me want to hide away from everyone, were filled with many positive outcomes. That IE is being reassessed, I am continuing on with my Yoga sessions, online Christmas shopping was my energy saver, this year I “did not” wrap our dogs’ gifts for their stockings, Christmas dinner was a collaborative labour of love that involved my husband and sister, again remembering to breathe, and having the down time between Christmas and New Year was a welcomed respite.
We need to accept that life continues no matter what our mental, cognitive and overall health status is. There is always sunshine behind every dark cloud, and eventually it does break through, our mood lifts and life will continue to move forward.
Happy New Year!
Our Creativity is waiting to re-emerge...
Think about what you liked to do in your youth. Was it writing in a journal, building model ships or planes, drawing, playing an instrument, anything that held you captive as you created something new or continued to build on an activity or avocation you truly enjoyed doing?
In my pre-ABI life’s story I went to university, entered into the work force and continued to build on an existing family business, married later in life, while always trying to provide emotional and personal support to others that needed me to be there for them. I believe that we were all impacted by the proverbial treadmill of the “daily grind”. Those seemingly routine activities turned into an avalanche of responsibilities. For so many of us, we become seemingly unaware of how we are impacted by allowing our pre-ABI life responsibilities to take away our “ME” time, pulling us away from those long ago life fulfilling and socially enriching activities.
In this journey of coming to terms with my brain injury, and the impact it has had on me, I am finding my creative side once again. It took time. It took the cajoling, suggestions and patience of those around me to allow me to find my way back to those things I did in my youth. Because of their support I am richer in spirit for finding my way back to writing, drawing and a new passion for painting watercolours. Each activity energizes me, making me think and feel a personal sense of “self-accomplishment”.
It may be something you did before your ABI. It can be something, that until now, you haven’t given much thought to trying it out. What about working on a puzzle, reading, or putting energy into looking at and cataloguing past and present family photos? And, even if you need someone to help you with that activity, the positive impact to your well being is that you will light up when you are able to carry it through, by talking about it in a social setting, with self-pride.
Find your escape back to what you enjoyed doing in your youth and allow those experiences to help you move forward.
Finding myself going backwards...
In those moments of darkness, when I find myself having awoken in the middle of the night, the string of words and thoughts swirling inside my head flow smoothly and succinctly. As I talk to myself in silent sentences I am perfect and whole. No stuttering, my words link smoothly, and I continue to breathe easily as those thoughts flow. During the daylight hours it has been another story as I once again find myself struggling to communicate to those who enter my everyday world.
Having previously written about my summer and the relatively brief but disruptive impact of changing medications, I had failed to understand, and even acknowledge how it had impacted my speech. Yes I heard the staccato of my stuttering as I searched for increasingly more and more missing words. I heard my repeated apologies of “I’m sorry, I’m sorry” and those anxiety driven “okay… okay…okay’s” and yet I didn’t quite grasp how I was so easily falling back into those chaotic speech patterns that were as a result of my Acquired Brain Injury. That was until a recent joint session with my OT and Speech Language Pathologist brought it out into the forefront.
Well before that meeting, my RSW, Janet, was constantly telling me to breathe as I talked. I would look at her, breathe, then continue on with my broken speech patterns. She worked hard at trying to get me to focus on what I was saying. We even spent an enormous amount of time doing meditations to temper the impact anxiety was having on me. And to work on my speech she had me reading a funny book about a group of senior “wanna be” bank robbers out loud. I knew what was happening… but then again somehow I don’t think I did. Sometimes it takes a team to intervene and help you get back on track! It was a “eureka” moment and I am grateful to have them all on my side.
As my mood improves, and those anxiety gremlins begin to slink away into the nether regions of my world, and I remember to breathe while listening to the string of words and sentences I am producing out loud, I know I am back on the road to recovery!
As Seasons Pass
It has been a funny summer, not funny haha but funny strange. Everything in the garden was 2 to 3 weeks behind. There were virtually no June bugs but the clouds of mosquitos were vicious. Even the momma Raccoon, Rockie, kept her babies out of sight until they were only slightly smaller than her. Every season has its challenges, expectations and triumphs. And so followed my summer.
After my March of Dimes presentation to a group of ABI survivors my summer seemed to roll out before me like a straight and narrow pathway. Other than planning for two day visits from our Bermudian son and his wonderful girlfriend, and our dear friends from St. Augustine, Florida, I felt it was a good time to work with my doctor to make adjustments to my medication regiment. No matter how much they tell you it will be a challenging couple of months, I now know you have to personally go through it to understand the disruption these type of changes can cause. Moodiness, increased anxiety, wanting to escape from your family, close friends, even your therapists, the impact of noise, changes in weather pressure… and so on, I felt my days had been turned upside down. Has it been worth it? A resounding YES!
As we approach fall, a new season of change, I am slowly beginning to feel closer to the me I was in my “New Normal”. It will still take another couple of months of adjustments to my dosages of medications but the difficult moments are becoming shorter and easier to manage. So if you are experiencing changes and challenges, as you move through this ABI journey, it will become easier, believe me, as someone who is going through it now.
March of Dimes ABI Conference
It was with anticipation that I looked forward to my final presentation of the Spring Season before taking a summer break. The March of Dimes, in Barrie, Ontario, had asked me to speak about “That Omnipotent Beast… FATIGUE” at their conference for ABI Survivors. Fatigue is something that I know we all face in our daily challenges with ABI and I welcomed the opportunity to explore how my peers dealt with this beast.
An invitation was also extended to my Occupational Therapist and Speech Language Pathologist to speak at the conference. From a clinician’s perspective they offered various strategies and ABI Resources available to anyone struggling with ABI challenges. We are working on including those resources on my website, so please keep checking in.
Of even greater value, to me, was the opportunity to hear others with ABI talk about their experiences, their challenges, their accomplishments… much of what they spoke about was laid out before us with a sense of humour and heart felt emotion. Thank you for letting me be a part of this worthwhile event. It was a good day for us all.
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