With Brain Injury Awareness Week 2019 just about coming to a close this post could not have been completed at a better time, gotta love it when serendipity comes calling.
Life is full of beginnings and endings with gains and losses throughout, of which, I am certainly not the only person who finds it easier to accept the new beginnings and gains, rather than the endings and losses. Nonetheless, those endings and losses are a part of life, both positive and negative.
Joyously anticipated, bitter-sweet or all out heartbreak, discomfort is an inevitable part of the process of endings and losses that we can’t avoid. If we are honest, for the most part it’s a simple as they hurt, even the endings and losses we willingly choose for positive reasons … Often hurting the most when that moment of full reality of an ending or loss hits home the hardest, no matter how long that moment is in coming.
However and whatever the discomfort of endings and losses, seeing the reality of circumstances with all the pieces of the puzzle in place brings with it clarity, the opportunity for acceptance, grief where necessary and on many occasions a fork in the road to take a new beginning from.
Hopefully a far more beneficial or happier road to journey along … A positive move forward, one step at a time!
But what if the pieces never fall into place because some are overlooked, concealed or even discarded, the clarity of circumstance denied indefinitely?
What if you never had the opportunity to choose the ending you were not even aware had occurred, or grieve the loss of a person you did not even realise had gone?
And what if the person you had lost … Was You?
It is a scenario that can play out from any number of life experiences aside from the context of brain injury and whiplash in the thoughts that I am about to share … As well, I could also speak from a position of chronic illness, divorce, blended family dysfunction, religious control, abusive family structures or financial collapse among other life circumstances.
There are endless scenarios that fit perfectly into the philosophy of acceptance of reality as a positive move forward.
So where did all this pondering acceptance of what is begin, and where has it ended?
Last year I began, what I intended to be, a short 3 part series of blog posts about Traumatic Brain Injury (TBI), Whiplash and Chronic Illness … A carefully thought out and researched series of posts to add my story of TBI and whiplash to a growing conversation on how much damage even a simple concussion can do.
Injuries that have the potential to alter a person’s life without the injured person or their loved ones ever being fully aware of what is happening.
What I did not anticipate as I moved on from having written and published Part 1 to writing Part 2, (Part 2 not yet completed) … Was coming to the heartbreaking realisation that I had been denied the opportunity to accept the reality of whiplash and TBI as life changing events that I had experienced.
Events involving both endings and losses that required acceptance and grieving. While possibly even offering the opportunity of a far more beneficial road to walk than the one I have in the absence of acknowledgement of those injuries.
So I’m going to hit pause on writing Part 2 for a moment to digress and get these thoughts off my chest about the necessity for acknowledgement and acceptance after sustaining these forms of injuries.
A few weeks ago, while I was listening to a podcast involving a group called Brain Injuries Matter, I had a revelation of sorts at the moment I heard a statement that went something like this, “… we all had a brain injury, went and did rehab and then went home (or to a nursing home etc)…”
It was a light bulb moment that had a tremendous emotional impact on me!
Why? … Because in my case, and the case of a good many other people who have experienced mild or moderate TBI … There was no rehabilitation process!
In fact in my case, I have never had any form of head trauma or brain injury acknowledged with any degree of significance by any doctor or specialist other than the following…
- 1995 – At the scene of the car accident.
- 1995 – Basic nursing observations three days following.
- 2014 – Physiotherapist cited TBI 1995 a concern.
- 2016 – Neurologist, brief dismissive acknowledgement.
- 2019 – A positive brief discussion with my current GP.
While I have mentioned the Major Car Accident during 1995 above, which did involve what is now considered a moderate TBI, what I did not mention was my First Car Accident during 1990. An accident which most certainly resulted in signs of concussion and long term symptoms suggestive of post concussion syndrome, a form of mild TBI that may have occurred through the force and motion of the significant whiplash that I experienced.
When it came to the 1990 car accident, the majority of any rehabilitation I received for the whiplash injury consisted of me being continuously told I was a malingering compensation fraud. Until I chose to “fake wellness” and created a mask to hide unending pain, along with simply adjusting to what cognitive symptoms lingered.
Life just carried on, me never quite being the same person I was before that first accident!
Then during 1995 when I went home from hospital three days after the most significant car accident in which I sustained the form of TBI that I did … Life just carried on once again!
You see, I had sustained enough of an injury to have lost consciousness for a 90 minute period, had all the signs of concussion after regaining consciousness, along with a face that was smashed up and swollen with an orbital fracture to my right eye. However, within three days I appeared normal, happy and well enough to go home.
I mean obviously I was battered, cut up, bruised and I looked like I had just been involved in a car accident created by a pot smoking drunk driver … Nonetheless, thanks to family and a small close knit group of friends, I was in pretty good spirits for what I had been through.
The day I was discharged from hospital, on the 25th of May 1995, no mention was made of any possibility of head or brain injury beyond the fact that three days earlier I had experienced a head trauma and sustained the fracture to the right side of my face. I also had not had any CT Scans or MRIs to assess any damage to my head or brain other than X-Rays to assess the orbital fracture on the right side of my face.
At the time of discharge no discussions took place at all, with either my family or myself, about the serious nature of having experienced a 90 minute loss of consciousness, the subsequent concussion symptoms or that I may experience difficulties for the rest of my life as a result of that injury.
There was also no follow up required other than for an Elbow Fracture I sustained in the accident that was surgically repaired within 24 hours after the accident.
None of which is any slight on any medical staff in any way, because this was the 1990s and this was standard practice … TBI and the risk of lifelong impairment from these injuries was so poorly understood during that era, in comparison to what they are now, and the long way that is still yet to come in understanding.
Finally, as anyone who has been following my story knows, the 1990s series of accidents concluding with a Third Car Accident during 1996.
Looking back to the 1990s, it was then that I should have been able to acknowledge, accept and grieve what I had lost through each of those car accidents. If not then, at least when I started questioning doctors during the early 2000s in reference to ongoing symptoms, notably head pain/ache and blackouts, that I strongly believe were connected to both the whiplash of 1990, and even more so, the head trauma of 1995.
However for me, as with many people who experience TBI, I didn’t know what I had lost. I didn’t know that my life was going to be as marred as it has been by injury(s) that would be dismissed by the medical community for almost three decades and counting.
Which all leads to this fact … When it comes to life changing injury or illness, we often don’t think in terms of loss and a grieving process, unless death is involved or injury is to the extent that function is severely impaired in a visible way.
I would imagine for many, the loss of quality of life does not even register for an extended period of time … Personally speaking, I didn’t even realise what I had lost because I was so busy putting exhausting amounts of energy into trying to live as if no impairment from injury existed and that symptoms of chronic illness in the form of Inflammatory Bowel Disease where not present in my life.
In my case I spent almost 30 years far too busy fighting for the life I wanted so desperately to live that I had no time to think of any injury or illness I was determined to beat as something that I needed to sit back and accept.
It’s true, I was far too busy fighting, just to live a normal life … Pushing my body to literal breaking point through endless treatments and therapies, as well as trying to rehabilitate or heal myself … Along with utilising my limited knowledge as a care worker in disabilities and using what I had learnt in rehabilitation studies in personal training & nutrition.
I was desperate to end the cycle of pain through keeping my body active!
I threw myself into a gym junkie lifestyle for a time, indulging in endless health fads or pain management regimes along the way.
I ran myself ragged with committed church attendance and good Christian works, hoping I might be someone with faith enough that God would choose to miraculously heal.
Way beyond pushing my body though, were the masks I was using my energy to create … Feeling the need to hide the painful truth of my life from the overtly judgemental eye-rolls in reaction to the fact I was never “better yet” … The insinuations of being weak or an attention seeker who just needed to “harden the f___ up” … These were all reason enough to hide every form of dysfunction and pain I possibly could.
The endless streams of unsolicited advice on health, faith and positivity from well meaning people who had no clue about my injuries or illness were just one more thing to avoid through wearing that mask.
But more than anything, I was far too busy managing the symptoms and complications of injury and illness the only way I could in the face of a continual dismissal by everyone I turned to for help within the medical community.
That is to say, I was far too busy enduring without adequate medical care what no doctor would ever allow their own family members or themselves to endure!
(Medical assistance that I might add, was sought rarely in comparison to what I endure(d) because each dismissal irrespective of history and physical symptoms, only heightened my increasing aversion to seeking any medical assistance at all.)
When push came to shove during 2006 my body spectacularly broke under the strain of my determination to live a normal life in a body that had been repeatedly traumatised, was chronically ill and had a history that gave every reason to suspect at least one notable brain injury had taken place, The Redefining of Life 2006.
It should have been another opportunity for many pieces of the medical puzzle to find their place … But instead it was just another opportunity for denial from the medical community, with insistence that I was nothing more than a fat, lazy, burnt out woman.
Still, I never gave the notion that I would not recover from that life changing event, during 2006, a single foothold … Because I had to win back the life I wanted to live, not settle for the existence my body was dictating!
The strength of that determination is what has seen me defiantly push back against every symptom of dysfunction and illness in my body since 1990, while carrying a burden of torturous pain that no one should ever have to carry year in and year out in the way I have, and so many others do on a daily bases.
Through all that fight to live and regain a life far more than an existence, I always knew, as did my family, that despite the refusal of the medical community to even acknowledge the car accidents, much less the whiplash or the period of unconsciousness … We all knew, that those car accidents played a major role in the unraveling complexity of injury and illness I have endured.
It was a reality I was denied the opportunity to accept and move forward from on an even playing field.
The reality was … That I was playing a game where all the odds were stacked completely against me, because the most obvious players on my team to win back a life worth living, had been unreasonably and unwisely removed from the playing field.
But there comes that time when reality can no longer be silenced!
Throughout this journey I have looked to every avenue for answers outside of TBI and whiplash as a cause for the life I have experienced … Purely because no one within the medical community would even so much as remotely entertain the possibility that any injury from those three car accidents, including whiplash and head injury, could be the cause of so much dysfunction and pain.
But you know what! … The simple truth is that TBI and whiplash, in particular the 1995 TBI alone, are entirely valid possibilities in explaining much of the path I have walked for almost three decades.
(Setting aside for a moment all other injuries from the car accidents, chronic illness and injuries from falls over the years due to balance, spacial perception and memory issues since March 1990.)
No doctor can dispute the fact that my life changed irreparably on March 13th 1990. I have an entire family who have walked a journey with me that the medical community only ever saw fleeting glimpses of, with no desire to look at the entire picture.
No doctor can dispute the facts surrounding the 22nd of May 1995, trauma that caused a 90 minute loss of consciousness and amnesia surrounding the event that remains to this day … A horrific crash to the extent that a young man died, with the lives of each of us that were involved being set on new paths.
And one other thing no doctor can dispute, is the advances in the area of TBI and whiplash injuries that are only just beginning to be understood and acknowledged by a minority within the medical community … Predominantly sports orientated injuries though, because of course that is where the money is to be made!
Having lived every year of almost three decades believing that The Next treatment, The Next therapy, The Next regime and The Harder I Fight for my life … I’ll get back a life worth living!
It’s time to accept the reality that has long been denied!
Meaning, that after almost 30 years of trying to live life as a person who had not been involved in multiple car accidents involving whiplash and TBI, along with battling chronic illness … It is time to accept that recovery, quite likely, never was and never will be a reality in my life.
Not in the way I would like to think I could recover … And now, not from the perspective that my body has been attacking itself and compensating through injury and illness for so long that the complexity has become almost certainly insurmountable, while my energy to fight anymore has almost entirely depleted.
As defeatist or possibly even depressive as that may come across it is actually a sound, well reasoned acknowledgment of “what is”, to which there is no getting away from or denying the reality of.
I’m a realist, not a pessimist … I see circumstances for what they are, add a little daydream to head toward and hope to land somewhere between the two.
For what may sound negative … I am one of the strongest, most optimistic people you will ever meet … Because if I was anything other than the strongly determined, optimistic woman that I am, I would not still be here, fighting to drag my body out of the fiery hell of injury and illness that has tormented me for near enough to three decades.
Even when every part of my being wants to close my eyes one last time at the end of every day with a desire to never have to open them to another day of torment in this body again, much less the wasted existence I’m supposed to call life! … I am still the woman who defiantly drags her body out of bed the next morning, painstakingly cloaking myself in the pretense of pain-free wellness as near as I can. All the day through, pushing my body to comply with the appearance of a life well lived and everyday duties easily taken in my stride.
Acceptance of reality, “What Is!”, as a positive step forward isn’t giving up … It’s about accepting the reality of circumstance, moving forward with a balanced perspective and hopefully surpassing all expectations.
Denial of reality, no matter which direction you come from, almost always ends with a process of grieving.
That is grieving after a long stint of hard work, failures of what never was meant to be and all the grief that accompanies the journey through each failed attempt … Before the grief through acceptance can clear the way to move forward.
Over the years if my health has become a topic for conversation the questions have been asked, “What is wrong with you?” or “What illness do you have?” … They have always been difficult questions to answer because I’ve always known that my life changed the day of that first car accident, which became multiple car accidents, followed by chronic illness and progressive disability.
However, with no doctor ever being willing to acknowledge the accidents and any possible injuries the answers don’t come easy, especially regarding symptoms that point toward TBI and whiplash associated injuries.
The truth is, I don’t need a doctor to acknowledge what my entire family and I knew to be true right from the 13th of March 1990.
I also don’t need a doctor to confirm that the symptoms and my documented medical history lines up with every medical explanation and personal account I have read on traumatic brain injury, along with whiplash associated injuries.
What I do need however, is to be able to acknowledge and accept that whiplash and traumatic brain injury have shaped (destructively impacted) the course of my life since I was 17 years old … Injuries I was strongly encouraged to ignore, deny and silence the valid concerns of, while all the signs pointed toward whiplash associated injuries and TBI from the beginning of my journey on March 13th 1990.
For many people like me who sustained these forms of injuries well before they were ever viewed with the same level for concern as they are now, having TBI and whiplash associated injuries acknowledged within the medical community is not as simple as speaking to your GP.
Simply because it becomes such a complex issue of long held “newly formed normals” for the injured person to function, along with having had to compensate in every aspect of life, often for years or decades.
Never mind the misfortune of those of us whose injuries or accidents forced us into an Accident Insurance scenario, involuntarily, which began adding to the injuries and rather than being rehabilitated by medical professionals … Further harm was done through denial of injury and accusations of malingering by medical and legal professionals who were more concerned with game play and their financial gain.
TBI survivors like me don’t have medical imaging to illustrate the point of injury because it wasn’t thought of or available at the time of our injuries. We don’t have a medical record that indicates TBI was even a possibility beyond the initial injury, because the symptoms and life long complications of TBI were dismissed as compensation fraud, psychosomatic, depression or some other form of mental illness.
But what many unacknowledged TBI Survivors do have, is a clearly fixed point in time and the knowledge of an identifiable event that changed their lives irreparably. (Sadly though, many others do not realise they have experienced TBI and that their lives are in free fall because of an injury they did not realise had occurred.)
For me personally, I do believe without a doubt I am a TBI Survivor … In fact, that Neurologist back in 2016 who briefly acknowledged the 1995 car accident and period of unconsciousness, before swiftly brushing it to the side … He made this statement to me in front of Daniel, “You are lucky to be alive at this point, either the 90 minute loss of consciousness in that accident or the year in & year out daily blood loss from IBD, each on their own, are enough to have killed you!”
And quite frankly, there have been many times along the way I really wish the head injury had killed me, for all I have endured … As hard as that truth is for my loved ones to accept (speaking of acceptance).
That neurologist’s statement aside, I still find myself unable to acknowledge traumatic bran injury outside of the closest family members who have walked this journey with me … All because the medical community continues to dismiss … Or rather, refuse to entertain the possibility that significant injury did occur.
Beside the fact it is so long ago that it would be hard to prove those injuries now.
Acceptance and grieving has been a part of my life in many ways, not just from the perspective of injury and illness … But from that perspective of injury and illness I have had no alternative other than to grieve many losses through the limitations of my body and the independence I have been force to relinquish along the way.
Throughout the years of increasing physical limitations and cognitive difficulties I lost the best years of my children’s lives, I was unable to fulfill career aspirations and my home was often a source of embarrassment. All of which was just the icing on the cake.
More recently I’ve experienced the heartbreak of grandchildren I’ll never be able to hold unassisted or care for as my parents did with my children. I’ve lost the battle against my body in my efforts to enjoy cooking among other activities, the way I once enjoyed them all … While almost three years ago I found the need to give up driving altogether, with the aim I’d some day drive again … And there is that little dash of daydream!
Accepting what truly is and allowing myself to grieve for the path I wish I could take, while heading down the path I know is the realistic one to walk along at this time in my life … Maybe less fighting for what never was going to be possible will usher in more moments along a brighter path somewhere between the daydream and reality.
Sometimes accepting reality is a far more positive move forward than banging your head continuously against a brick wall that was never going to be moved, no matter how many times or how hard you threw yourself at it!
Because banging your head against a brick wall that keeps on denying reality while withholding acceptance, does far more damage than the pain of accepting reality could ever have caused through a valid process of grief and a new beginning with a brighter path ahead.
So where does all this realisation and acceptance leave me personally?
Well … I’m not really sure about that!
On a very personal note I suppose it allows me to move forward through that acceptance and grieving process … While also giving me the freedom to be a tad kinder to myself … Instead of beating up on myself for being anything other than the woman I always believed I could be once I achieved recovery, and was determined to fight endlessly to become.
However, my acceptance alone, without acknowledgement from medical professionals … Does not help me in the slightest in regards to my ongoing decline, treatment and accessing medical services.
Then there is also the very frightening reality that if, heaven forbid, Daniel should leave this earth ahead of me … I will have no grounds for accessing any form of financial assistance. I will be forced to seek employment, even though I can only barely tend to the necessities of keeping my household functioning, while increasingly becoming a greater burden on Daniel and our children already (At only 46 years of age!).
For now, all I can do is learn what I can, accept “what is” and continue on as I have since this journey began.
Oh yes! … And continue with telling my story in an effort to connect with others battling along their own journey in the same way I have, while adding another voice to a long overdue conversation … Part 2 of that little project on TBI is still on it’s way, if I can just get the cognitive dysfunction I’ve been trying to write about to ease off a tad for a week or two it would be helpful.
Tags: Chronic Illness, Chronic Pain, Confronting Medical Apathy, Disability, Exploring Brain Injury, Inflammatory Bowel Disease, Injury, Journaling, Traumatic Brain Injury, Ulcerative Colitis, Whiplash Injury