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, endings and losses are a part of life, both positive and negative.
Whether joyously anticipated, bitter-sweet or all out heartbreak, discomfort is also an inevitable part of the process of those endings and losses that we can’t avoid.
And for the most part, it’s a simple as those endings and losses hurt, even the endings and losses we willingly choose for positive reasons; often hurting the most during the moment that the full reality of circumstances hits home the hardest. (No matter how many days, weeks, months or even years that moment is in coming.)
However and whatever the discomfort of endings and losses, seeing the reality of life and personal circumstances with all the pieces of the puzzle in place brings with it clarity, the opportunity for acceptance and a grieving process where necessary.
Many a time, reality bringing with it an opportunity to move forward from a positive perspective; via a newly formed fork in the road or even a path in a completely different direction that had not previously been considered, because reality needed to be accepted before that path could be revealed … Granted these can be painful or bitter-sweet steps forward, though they are forward moving nonetheless.
What if, the pieces of reality never fall into place because some are overlooked, concealed or even willfully discarded by other people — the reality of circumstances never fully becoming clear — acceptance of reality 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 medical context in the thoughts that I am about to share … I could just as easily be speaking about the need for acceptance of reality as marital breakdown tests how long a person can silence their own intuition when deception is at play; or how someone of faith finally opens their eyes to the reality of cult-like religious abuse that has slowly choked their faith to a soul crushing death; or coming to the acceptance that financial collapse is inevitable regardless of the blood, sweat and tears that have well earnt success far above the failure that is reality.
The scenarios are endless!
Acceptance of reality is simply a part of life that can only be denied for so long!
However, one thing is for certain about the denial of reality … When reality is denied indefinitely, with no option for acceptance of circumstances within that reality — life’s journey then becomes a fight that inevitably does far greater harm than the acceptance of reality could have ever done.
“When reality is denied indefinitely … Life’s journey then becomes a fight that inevitably does far greater harm than the acceptance of reality could have ever done.”
So where did all this pondering acceptance of reality begin, and where has it ended?
Last year, 2019, I began — what I intended to be — a short 3 part series of blog posts exploring Traumatic Brain Injury (TBI), Whiplash and Chronic Illness … A carefully thought out and researched series of posts to add my story of whiplash and head trauma to a growing conversation about how much damage even a “simple” concussion or mild to moderate TBI can do.
What I did not anticipate as I moved on from having written and published Part 1 to writing Part 2, (Part 2 still not yet completed) … Was coming to the heartbreaking realisation that I had been — and continue to be — denied the opportunity to accept the reality of TBI and whiplash as life changing injuries that have impacted my life since 1990.
Injuries and events involving both endings and losses that required acceptance and grieving. Which could have also allowed me to walk a far more beneficial road than the one I have been forced to contend with for what is now 30 years.
So I’m going to hit pause on writing Part 2 to digress and get these thoughts off my chest about medical acknowledgement and personal acceptance after sustaining injuries such as TBI and whiplash; along with the acceptance and grieving process that comes with chronic illness.
The Light Bulb Moment
During mid 2019, while I was listening to a podcast involving a group called Brain Injuries Matter, the reality of the life I had been living since my first car accident during 1990 hit me hard with one single statement.
That statement 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, causing tears to stream down my face as if someone had physically landed a blow that slammed against the pit of my gut and winded me.
Because in my case — and I would imagine the case of many other people who have experienced mild or moderate traumatic brain injury — there was no rehabilitation process! Much less was there any form of acknowledgement from the medical community regarding the severity of injury or the steady increase of post-injury symptoms once I was deemed fit and healthy; relatively soon after each accident.
“Because in my case, and I would imagine the case of many other people who have experienced mild or moderate traumatic brain injury…
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 a car accident.
- 1995 – Basic nursing observations for three days.
- 2014 – Physiotherapist cited TBI 1995 a concern.
- 2016 – Neurologist, brief dismissive acknowledgement.
- 2019 – A positive brief discussion with my current GP.
In that list above I have mentioned a Major Car Accident I was involved in on the 22nd of May 1995, in which I sustained what is now considered a moderate traumatic brain injury. A TBI that included loss of consciousness for a 90 minute period, the usual signs of concussion such as vomiting and headache, plus experiencing amnesia regarding the accident which remains to this day.
However, what I did not mention in that list above was my First Car Accident on the 13th of March 1990. An accident involving a significant whiplash that was acknowledged, while the signs of concussion with long term symptoms suggestive of post concussion syndrome have never been acknowledged — and certainly never believed.
A car accident during 1990 that had the potential to inflict a mild TBI through the force and motion of the significant whiplash that I experienced; in a car that had low back seats, no head rest and was stationary at a red light at the time of rear end impact at 60km/h (approx. 37m/h).
Sadly, 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 lying about the severity of my symptoms, while being labelled a malingering compensation fraud.
In the end, I was forced to “fake recovery” so I could remove myself from the abuse of the Work Cover Insurance system that I had been involuntarily placed within by my employer at the time of the accident — a system that did far more harm to me than the initial injuries of the accident — leaving me no alternative but to hide unending pain, along with simply adjusting to a life that included living with all of the symptoms that lingered.
Life just carried on, me never quite being the same person I was before that first car accident!
Then during 1995 when I went home from hospital three days after the second and most significant car accident in which I sustained the form of moderate TBI that I did — life just carried on once again!
You see, when it came to the 1995 car accident I had sustained enough of an injury to have lost consciousness for that 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, 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 head or brain injury beyond the fact that three days earlier I had experienced a head trauma and sustained the orbital fracture to the right side of my face. —There was certainly no discussions about the serious nature of an injury that caused 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 (especially not in conjunction with previous injuries).
During my three day recovery in hospital there were no CT Scans or MRIs ordered to assess potential injuries to my head, brain or even my neck and back.
The only images taken of my head during the hours and days after the accident were x-rays to assess the facial fracture — and that is it!
There was also no follow up required for any injuries, other than for an Elbow Fracture I sustained in the accident that was surgically repaired within 24 hours after the injury had taken place.
Let me clarify though, none of that is any slight on any medical staff in any way regarding my injuries from that accident — it was 1995 — it was standard practice during that era, based on the level of understanding of closed head injuries and whiplash at that time.
There was also the fact that by 1995 I was a consummate actress in functioning through extremely high levels of pain. Covering up physical, and (at the time) unrecognised cognitive challenges from the 1990 car accident.
In simple terms, I had sub-consciously developed techniques of compensation so that attention would never be drawn to my pain, physical limitations or the cognitive quirks and misfirings that had become a part of my everyday life … Symptoms I had been aware of since the 1990 car accident but felt I could not speak of and did not want any attention drawn to due to what I had endured through the Work Cover system.
The reality was, by the time of the 1995 car accident I had been living with chronic pain throughout my body for five years, including daily headaches that occasionally increased to become a gut wrenching migraine whenever pain chose to demand my attention fully.
And so, it really was not likely that any headache I was experiencing as a result of a newly sustained head injury was going to register as something I should be concerned about or make mention of.
Needless to say, I was also still pretty groggy during the three days of my hospital stay thanks to the accident itself, anesthesia from the elbow surgery, pain medications, and the fact that no patient actually gets any rest during a hospital stay after a serious car accident.
Honestly, pain and symptoms from car accident injuries were really just a normal part of my life and I hadn’t experienced anything I felt the need to make a big deal about during those first few days after the car accident of 1995 — not even with all the cuts, bruises and justifiable pain … Which meant, life did just carry on after the second car accident, the same way it did after the first car accident!
“…Which meant, life did just carry on after the second car accident, the same way it did after the first car accident!”
Looking back in hindsight — after my experience within the Work Cover system from 1990 to 1993 — I think subconsciously I didn’t want any attention whatsoever from any member of the medical community in relation to any car accident injuries, no matter how serious the accident was or how much pain I was in.
Finally, as anyone who has been following my story knows, I went on to have a Third Car Accident during 1996 which simply exacerbated all previous injuries … And life still just carried on!
The Price of Recovery At Any Cost
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, in relation to TBI and whiplash — was the chronic headache, acute head pains, blackouts and various other symptoms throughout my body. All of which strongly correlated with the whiplash of 1990, the head injury of 1995 and the nature of the car accidents in general.
However for me, as with many people who experience mild or moderate TBI, I didn’t know what I had lost during the days, weeks, months or even the early years after those car accidents!
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.
Likewise, questions surrounding chronic illness in the form of ulcerative colitis (an inflammatory bowel disease, aka IBD) also required answers, that were not being given. In fact it appeared the longer the disease that I was first diagnosed with mid 1996 remained active, with extraintestinal manifestations (EIMs, symptoms outside of the GI tract) increasing throughout my body from the early 2000s onward — the harder it was to have any questions answered.
Simply put … I had no idea that my life was going to be as marred as it has been by both injury(s) and chronic illness that would both be denied, dismissed and downplayed by the medical community for three long, painfully frustrating decades, and still counting.
And I would imagine for many with either injury or chronic illness, that the loss of quality of life does not even register for an extended period of time as life carries on or recovery is pursued.
Personally, I didn’t realise what I had lost for over 20 years!
The truth is, I was far too busy putting exhausting amounts of energy into trying to live as if no impairment from any injury existed and that chronic illness was not present in my life … 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 as permanent, let alone progressive in nature!
I just wanted to live the life I had dreamt of and prepared for throughout my childhood!
Instead of living the life I imagined I would as an adult, I was too busy pushing my body to literal breaking point as a result of perpetual dismissal from the medical community. Dismissal that often came with the insistence that I was nothing more than a fat lazy neurotic woman who was too stupid and undisciplined to eat right, exercise and take responsibility for her own health and lifestyle choices.
My desperation to end the cycle of pain and illness meant keeping my body and mind active, along with my spirit positive in every way possible! (And to prove I wasn’t the undisciplined, unintelligent, lazy malingering melodramatic attention seeking faker many in the medical community — and other people in my life — have made me out to be.)
“My desperation to end the cycle of pain and illness meant keeping my body and mind active, along with my spirit positive in every way possible!”
I was also too busy avoiding the acceptance of the limitations that my body was screaming at me to be heard. —Because those screams from my own body were coming from the fat lazy neurotic woman I came to believe I was, at the insistence of the medical community. —A view of myself that caused me to push my body all the harder, because I was never prepared to accept that brand of laziness, weakness or lack of intelligence as the way the rest of the world defined me.
Over the years I pushed my body hard, through countless treatments, therapies and weight loss regimes. Striving to achieve recovery, remission and a physical appearance that would garner me just a smidge of respect from someone within the medical community, should I not be able to bring wellness to my own body without them.
I used the knowledge I had gained during my training and short lived work as a career for people with disabilities to overcome various circumstances in my life. While studies I had taken in personal training & nutrition that included a module on rehabilitation also came in handy … Two sources of knowledge meshed together that became invaluable in creating my own self-help / recovery programs to work toward regaining a life worth living.
I tried many forms of pain management along the way and pushed my body harder the more it screamed exhaustion.
I did physiotherapy in more forms than I knew existed, cognitive therapies, behavioural therapies and plenty of walking … I did hydrotherapy, electroacupuncture, Chinese acupuncture, Chinese cupping and more walking … Stretching exercises, relaxation massage, deep tissue massage, I kept on walking, I even started riding a bike again at one point … I’ve had my back cracked, readjusted, realigned and snapped back into place more times than I care to remember, especially with one chiropractor in particular who did far more harm than good!
I threw myself into a gym junkie lifestyle for a few years. Indulging in endless health fads, severely restrictive diets and feeling my strength grow as the weights I lifted increased dramatically, while I also walked excessively — obsessively.
I spent thousands of dollars on personal training sessions, gym memberships, protein powders and supplements. (Until my body screamed, “Now you’ve pushed me too far!” and refused to indulge me in my gym junkie / weight loss obsession any further.)
I took notes from naturopaths and alternative practitioners, I carefully researched what foods, herbs, vitamins and supplements would help my body to function better — which all amounted to nothing, except producing large volumes of very expensive urine.
Spiritually, I ran myself ragged with committed attendance to church meetings, prayer meetings and good Christian works, hoping that I might eventually be someone with faith enough who God would choose to miraculously heal. While at the same time, I prayed for others to receive their miracles and supported people I knew who were battling to carry their own cross to bare.
I wrote Bible verses on my bathroom mirror to recite as positive affirmations throughout each day and remind me God would not allow me to suffer anymore than I could handle — or at the very least, that He would help me hold onto the belief that He would provide me with the strength I needed to see each day through, one day at a time.
I grabbed hold of every worldly statement of positivity I could, and I lied endlessly to myself about how much better off I was than other people.
Privately, I knelt down to pray on knees that ached, swollen with fluid and feet that would respond with the most crippling form of pain — all as an act of physical sacrifice in tearful desperation to be heard by the God I would eventually accept was never listening.
And still, I held onto every supposed promise of God and positive worldly statement far longer than any ounce of reasoning should have ever allowed.
But, 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 that I possibly could.
The endless streams of unsolicited advice on health and positivity from well meaning people who had no clue about my injuries or illness was just one more thing to avoid through wearing that mask! … A mask that was my only protection from the kind of well intentioned “encouragement” that is more akin with accusations of not helping one’s self, giving up prematurely or clearly choosing not to implement the option of hardening the f___ up!
Far beyond that exertion to heal my own body and hold myself together for the sake of avoiding judgement or unsolicited advice — was the energy I was exerting to do the job of the medical community for them.
“Far beyond that … was the energy I was exerting to do the job of the medical community for them…”
You see, I was managing the symptoms and complications of injury and illness the only way I could in the face of a continual denial, dismissal and downplay by almost everyone I turned to for help within the medical community.
That is to say, I was far too busy enduring without adequate medical assistance or care what no doctor would ever allow their own family members to endure, much less be prepared to endure themselves!
(Medical assistance and care that I might add was, and is, sought rarely in comparison to what I was, and do, experience on a daily bases. Because each denial, dismissal and downplay irrespective of history and physical symptoms has only ever heightened my increasing aversion to seeking any medical assistance at all.)
When push came to shove during 2006 my body broke spectacularly under the strain of my determination to live a normal life in a body that had been repeatedly traumatised, was chronically inflamed, chronically bleeding daily from IBD and battling various other injuries and life altering symptoms.
“When push came to shove during 2006 my body broke spectacularly under the strain of my determination to live a normal life in a body that had been repeatedly traumatised…”
(You can read the events of 2006 here in The Redefining of Life 2006.)
That breaking point during 2006 should have been another opportunity for many pieces of the medical puzzle to find their place through thorough medical investigation, more in depth exploration of patient history and me as the patient actually being listened to about my experience within my own body. Along with my family adding their own observations and experience to a much broader conversation regarding my health.
Notwithstanding! … It was just another opportunity for denial, dismissal and downplay from the medical community. This time not only insisting that I was nothing more than an fat, lazy, neurotic woman, but that I was a burnt out and depressed woman at that.
(Sure! … Because my not being able to put one foot in front of the other while walking as my body contorted with pain and dysfunction was most certainly mental illness, right!?)
Still, I never gave the notion that I would not recover from that life changing event, during 2006, a single foothold.
From that point, I was more determined than ever to win back the life I wanted to live, not settle for the existence my body was dictating!
And so, the therapies, regimes and walking continued, especially considering there was nothing wrong with me — apparently — well, apart from crippling pain, ongoing GI symptoms / symptoms suggestive of autoimmune issues and brief episodes of some kind of momentary paralysis that coincided with the start of chronic sacroiliitis and an increase of the cognitive symptoms I had experienced since 1990. (Of which the episodes of paralysis that occurred and cognitive symptoms have never been believed.)
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. —While being expected to deny the reality of events and circumstances that may allow for acceptance and a much more beneficial path forward.
The price I inevitably paid for relentlessly pursuing full recovery without understanding the fine print of the injuries or illness I was dealing with, much less listening to the body that was screaming at me to accept reality…
The price I paid … Was foregoing a quality of life worth living!
Instead of living, I have existed to fight every day as a battle for a future that would never come, a battle against the force of injury and illness that required acceptance and reconciliation as part of my future — integrated into my life, voluntarily or not.
The Reality Is…
Through all that fight to live and regain a life far more than an existence, I always knew — as did my family — that those car accidents played a major role in the unraveling complexity of pain, multi-system dysfunction and increasing disability that I have fought against since I was 17 years old. My family and I also knew that IBD was playing it’s own role in the unraveling complexity of illness and dysfunction throughout my body, a part equal to that of the car accidents.
However, the impact both injuries and illness were having, and continue to have on my life, is a reality I have consistently been denied the opportunity to accept and move forward from on an even playing field. Especially regarding whiplash and the high probability of TBI.
Quite simply, the reality was and continues to be, 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.
Throughout this journey I have looked to every avenue for answers outside of TBI or 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 TBI, could be the cause of so much dysfunction and pain.
(Setting aside for a moment all other injuries from the car accidents, the IBD and injuries from falls over the years due to balance, spacial perception and memory issues since March 1990.)
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 all of these years.
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, while also 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 for my life 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.
Acceptance of reality — “What Is!” — is not giving up or giving in!
Acceptance of reality is about accepting the reality of circumstance, moving forward with a balanced perspective and hopefully surpassing all expectations.
Persistent denial of reality, no matter which direction you come from, almost always creates a repetitive process of painful grief and perpetual hopelessness.
“Persistent denial of reality, no matter which direction you come from, almost always creates a repetitive process of painful grief.”
That is, repeated loops of grieving and recovery for the same circumstances or wound repeating over and over, again and again — long stints of hard work through grief to failed recovery, then going back to achieve what was never going to be achieved in the first place, again.
Isn’t that what many call the definition of insanity.
It may well be coming at the same set of circumstances or wound from a different angel … And there may well be some very valuable lessons learnt along the way … But eventually true acceptance of “What Really Is!” to bring about grieving in a sense of completion — or closing a chapter — is the only way to truly move forward one positive step at a time, as painful as that can be.
Taking Ownership of “What Really Is!”
Over the years if my health has ever become a topic for conversation, due to my body failing to compensate and allowing my mask to slip, questions inevitably get asked … “What is wrong with you?” or “What illness do you have?”
Which have always been difficult questions for me to answer!
I mean, with no doctor ever being willing to acknowledge the severity of the car accidents, the correlation of timing and symptoms that point toward whiplash associated injuries and TBI, much less the severity and duration of IBD with a whole raft of extraintestinal manifestations that have impacted my life tremendously — the answers to those two little questions have never flowed easily for me.
A denial from the medical community, through dismissal, downplay and the insistence that I am nothing more than a fat lazy neurotic woman, that has prevented me from the acceptance of what truly is the reality of injuries and illness in my life … Denial that has withheld the necessity for me to grieve what I had lost at each stage of injury and illness, and then move forward along a far more beneficial path as it revealed itself through the acceptance of a “new normal” each time my body and life changed.
Ultimately, a denial from the medical community that has held me in a perpetual loop of striving determinedly to recover, followed by inconsolable grief when recovery fails. A process repeated time and again whenever medical assistance has been sought through each stage of progressive dysfunction.
And it is that form of denial that I am no longer prepared to accept!
You see, I may be denied investigation, treatment, respect, dignity and the right to advocate for myself within a medical setting. However, the absolute facts regarding my medical history, the experience within my body, along with the illness and dysfunction family and friends have witnessed over the years as I have strived to “hold myself together” — can not be denied in the slightest!
Facts are facts! … Truth is truth! … And I don’t need a doctor or any other person to tell me that the physical and cognitive symptoms I have experienced since each of those car accidents means something had gone very wrong.
I also never needed a doctor to know that bleeding significantly through my digestive system, daily, for the majority of a 16 year period was a major indication of illness throughout what has now been 24 years of active IBD in one way or another.
And lastly, I don’t need any doctor to substantiate the contorting pain and spasms I live with on a daily bases; or even the instances in which I have battled to put one foot in front of the other simply to walk, while fall after fall goes completely ignored; I have an entire family who have walked that journey with me and know the absolute truth of the dysfunction and torture I live with on a daily bases.
What I do need now though, from myself — for myself — is to finally allow myself to take ownership of the reality that injury and illness have shaped (destructively impacted) the course of my life since I was 17 years old … Acknowledging and accepting that ongoing symptoms of both injury and illness that I have been strongly encouraged to ignore, deny and silence the valid concerns of — are in fact, very real!
“What I do need now though, from myself — for myself — is to finally allow myself to take ownership of the reality that injury and illness have shaped the course of my life since I was 17 years old…”
And here is the kicker of why people like me openly write declarations of acceptance like this while we tell our stories for all the world to hear…
When it comes to TBI and whiplash, for people like me who sustained these forms of injuries well before they were ever viewed with the same level for concern that they are now; having TBI and whiplash associated injuries acknowledged within the medical community, it’s not as simple as speaking to your GP.
“Having TBI and whiplash associated injuries acknowledged within the medical community, it’s not as simple as speaking to your GP.”
Firstly, there are many more than me who have been bullied, intimidated and shamed into denying the extent of injuries and symptoms by “professionals” within workplace / accident insurance schemes — such as Work Cover in Australia — who employ the most unscrupulous, intentionally damaging, financially driven “professionals” across medical and legal fields … An experience for an accident victim, that creates aversion to seeking any medical assistance at all through the experiential knowledge that your symptoms will likely not be believed.
Secondly, modern medical practice has no interest in complex medical scenarios that require in depth thought from outside the proverbial box, nor does it provide opportunities to create doctor / patient relationships in which a doctor has time to really get to know their patients … It is simply an industry, and as a money making industry, modern medicine has little time or care for patients who’s needs are viewed as a drain on financial resources, irrespective of symptoms, patient history or quality of life.
Finally for someone with an old TBI injury, these injuries tend to be hidden behind a complexity of long held “newly formed normals” to function in daily life. From silently hiding pain, to compensating through movement, physical tasks and weaknesses; life just carries on.
You have to find a way to carry on with it, there is no other choice when you are told it’s all in your head anyway.
Through both injury and the progression of illness I have learnt how to cover up what I can of the physical, the visible. But I also have speech issues, auditory challenges, and different forms of memory deficits that I have had to learn how to compensate for and hide as best I can from the rest of the world.
Since the first car accident I’ve also been covering up glitches where small moments of my life just disappear, lost through lapses of time that I have no idea where I go! And when it happens during conversation I’ve simply had to adapt to filling in the blanks of the words I have missed, for however long I’ve been gone — an art form I think I’ve mastered quite well, if I do say so myself.
Whether “new normals” are formed consciously through rehabilitation and retraining, or subconsciously out of a necessity to function effectively and hold dignity in place. —These strategies do exist to conceal dysfunction far greater than most people realise is occurring. Symptoms of injury or illness going unseen to a great extent, even by the people closest to us, and especially by medical professionals through time-poor medical practice.
And let’s be honest here … Everyone in this life, healthy, ill or injured, utilises strategies to cover each and every personally perceived flaw of their own, for the sake of their own comfort, dignity or even the kind of vanity that strives for popularity!
There is one other thing that TBI survivors from old head injuries don’t have, specifically…
I don’t have any medical imaging to illustrate the point of injury at the time of the 1995 car accident, because it wasn’t available at the time of my injury, and injuries like mine were also not viewed as significant enough for the expense of any imaging that was available at that time.
I also don’t have a medical record that indicates TBI was even a possibility beyond brief notes citing the initial head injury of 1995. Purely because, in my case, the symptoms and life long complications of both whiplash and head injury from 1990 onward were consistently dismissed as compensation fraud, psychosomatic in nature, 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 would not even realise they have ever experienced a TBI and that the life of chaotic free fall they are living through may be as a result of an injury they did not realise had occurred.)
Medically acknowledged or not, I do know without a doubt that on the 22nd of May 1995 I became a TBI Survivor! (Setting aside the significance of the injury from 1990.)
Quite frankly though, for all it has been worth, I often wish I wasn’t a survivor.
Honestly, death would have been far kinder than the life I have lived since that day, (not only from the perspective of injury), as much as I am thankful for the relationships I have had with my husband and my children … It has been a very long time since I have seen someone “survive” a serious accident or illness of any kind and believed they were lucky. I’ll reserve my belief in their good fortune for a time that I can know they actually lived a good happy life, free of torment from injury or illness for the remainder of their life.
Sadly, that is the harsh reality my loved ones have to accept (speaking of acceptance).
But I digress…
There comes a time when personal ownership of “What Really Is”, the facts and truth of any situation, can no longer continue to be shoved away in a corner — and this is my moment for taking ownership of “What Really Is” in regard to those injuries and illness that have impacted my life.
The Acceptance of An Easier Path
If I am really honest, acceptance and grieving has been a part of my life in more ways than should be expected of one person in a single life time, from far to many perspectives … But from the 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 (among other contributing scenarios) I did lose the best years of my children’s lives. I was unable to fulfill career aspirations and my home was often a source of embarrassment rather than the domain of the traditional housewife I proudly strove to be. 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. (Okay, so they are in another state, but it would be nice to have cuddles without someone else’s assistance, push a swing or scoop them up after tumble when we do spend time with them.)
I’ve lost the battle against my body in my efforts to enjoy cooking the way older generations of woman in my family taught me to cook. While hospitably entertaining from the heart of my home, my kitchen, I am now drained from exhaustion that fills my body with pain — rather than the act of hospitality filling me with the joy it once gave.
But in amongst all the crushing blows I think losing my independence has to be very near the top of the hardest limitations to accept in it’s current form. Because little do we realise — until it is gone — that independence ties in with almost every other facet of living this life.
As a career for people with disabilities I once assisted my clients with their housework, their hygiene and daily activities. A job that involved helping some clients to get dressed, do their weekly shopping and even attend social activities … Rarely did I give a thought to the lack of independence on their part, other than the occasional conversations on the topic with a specific client or with the loved one of a client who just need a shoulder to cry on.
But as someone who found the need to give up driving altogether several years ago — as a temporary measure — it is not easy to accept being unable to leave the house on a whim, even as an introvert who is entirely comfortable with their own company at home … It is not easy to accept that the lack of independence through not driving and the physical limitations of my body means I am unable to shop for myself and my family at any time of my choosing.
It certainly is not easy to accept that there are clothing items I sometimes need assistance with from my husband while getting dressed, or that I can’t keep up with the housework that I, as the housewife, long to do for myself.
I was once so independent, physically strong and wholly capable — I am not so sure that I can accept that I wont be that independent, strong, capable woman again!
And as much as I declare that acceptance of “What Really Is” carries the level of importance I have attributed to it, I still plan my life believing that I will one day be that strong, independent, capable woman once again.
I still aim to be driving again, even if it is only locally, for my own sanity and a small amount of independence that gives me some sense of freedom and worth.
In fact, my sights are firmly fixed on driving again before I am 50, because I am too young to accept that the life ahead of me is as small as the existence I remain trapped in at this moment — heck, I’ve even asked Daniel for an early 1980s Holden Gemini for my 50th birthday, in a little over 2 years … And there is that little dash of daydream!
“…because I am too young to accept that the life ahead of me is as small as the existence I remain trapped in at this moment … And there is that little dash of daydream!”
However now, rather than fighting for answers, fighting to be heard within a medical system that has been nothing more than a brick wall that I have been smashing my head against for far too long…
Now! … I can finally grieve the unfulfilled aspirations, the loss of the woman I imagined I would become but never became, the heartbreak of living a life that fell far too short of my expectations and all the bitter disappointments along the way through every ounce of illness, dysfunction and pain!
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.
I suppose 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 — maybe accepting the best I can give one day at a time is enough to be a woman of worth in some way or another.
Nonetheless, my acceptance alone, without acknowledgement from any 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 47 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 … Only now, along a new path through a new season of my life that may bring a few more sunnier outcomes and a whole lot more happiness.
You know I have a plan!
But that’s a-whole-nother post, for another day — before I digress…
How do you tackle accepting “What Really Is” when it’s on a painful loop?