Having lived with a brain injury for 26 years, the turbulent cycle of emotions is now all too familiar for the Brain Damaged Baron. Here, the blogger and YouTuber shares his powerful reflection of the internal struggle to reach acceptance, while the sun still shines and the birds continue to sing
Sweet birdsong flutters through the clear and crisp air, shattering the morning peace.
An unrehearsed symphony heralding the day with its joyless melody. The glass of the bedroom window and the thick, lined curtains are no match for its piercing, deafening cry.
Like a hot knife though soft melting butter, there is only ever going to be one victor. It is white noise, a cacophony of sound, nothing more than an irritant.
Every morning, every damn morning. It’s a part of life, like breathing, eating, suppressing wind, the quest for love or even the fearful headaches that have overtaken life.
Ah, headaches. From the mild discomfort of a mere background soreness through to the agony of a pain so severe that it feels as if a scalding dagger has been plunged into the temple. And twisted. Disabling and seemingly unbearable until the blissful release of an intricate blend of medications eventually sweeps away the pain.
The incapacitating pains are now as much a part of life as the infernal birdsong that welcomes the day with all the subtlety of a sledgehammer. Every day, every single day.
‘You have brain damage, and severe brain damage at that. The effects this will have on your life will become apparent, but only in the fullness of time. For now, we must wait’
As statements go, it’s right up there with,
‘You have a degenerative disease,’
‘A close relative has died,’
‘Those Ant & Dec fellas, they’ll be immeasurably popular for decades.’
They are just words; however their significance can never be lost.
Sure, the statements are difficult to comprehend, almost impossible to believe. Nevertheless, they are undeniably true.
The sooner the brain is trained to accept them as just that, the sooner life can continue unabated. But that brain is already immensely overloaded, burdened by the enormous task of almost starting from the very beginning. Again.
Some of the lessons that need to be learnt are thankfully brief. Flickering embers in the mind relight when the flame is fanned. But others, others can’t be relit even with a burning match. The blaze has long since died and a fire hotter than the sun would fail to even raise a single weak spark.
Grief for the life once had, the death just lived through. No longer the person who grew, who learnt, who matured, who loved.
The person who lived.
Now gone, a hazy memory, a distant afterthought. The images are printed on the glossy paper of memory, paper that faded with the passing of time. Soon the images are so distant, so worn that reality and memory simply fades into one amalgam. It’s a blend so intricate that reality is unattainable.
An alloy of memories, loves, losses, abilities, smiles and tears that falls from the grasp. Clutching, reaching, feeling, ultimately dropping…
And there you have it. Back to that square, the gloomy square marked with a huge and ominous ‘One.’
Thrust there not by choice, but by an event or a series of events over which there was never any control. An illness, a vessel burst, an impact, whatever the array of causes, the outcome is never the same.
One thing does however expose the outcome, the condition, the aftermath.
Ironically that tell-tale sign is invisibility.
The chasm within is betrayed by the façade. The strong outer walls become the enemy. Inside the building the walls have crumbled and rot is plaguing the structure. It soon becomes simply a shell of the construction that once proudly stood.
People casually walk by and see those outer walls; the impenetrable shell that hides the truth. The walls become a fortification, a barricade. It’s impressive but it’s all that can be viewed. The stark reality of what that building contains is undetectable.
And so, for forever and a day the truth can never be seen. From the outside, in the clear light of day all looks well.
However, the fight within is neatly tucked away out of sight and nobody, nobody will ever believe the stories of the turmoil hidden away inside.
It can’t be true, it isn’t true. The building looks so well, so strong that it is somehow utterly impossible to conceive that all is not well inside. And yet, they never ask, they never question. The judgements are set in stone and there they will stay.
Onwards and upwards. Or… sideways.
But the privileged few know the truth, the secret. It never needed explaining to them, they didn’t need to be told. They just knew. That alone is an enormous comfort and a huge relief from the doubters and cynics who continue to add to erosion within. It is far from a deliberate act, how can they ever know?
Without peering inside, nobody will ever see. And there is much work to be done to get that view, to see within. Much care is required and for most a casual walk by is by far the easiest option. Look but don’t touch, view but don’t enquire. And walk away.
Life goes on, the clock continues to tick. And every day, every single day, that birdsong slices through the air like a hungry eagle hunting its prey.
Square One is a lonely place. There are long days and even longer nights.
The mind is a complex organ. It has an uncanny knack of flexing its muscles in the hours where only the all-consuming darkness resides. The minutiae of life fills the thoughts, the tiniest detail has become so important that it must be dissected with surgical precision.
Sleep constantly battles against the powers of deep thought, of worry, of an astonishing lack of self-awareness. Intense tiredness becomes an ugly force intent on overtaking every aspect of life.
Sometimes the searing pain of that hot dagger in the temple works in tandem with the mind to stamp on any chance of sleeping. The night draws out like a long, lonely road devoid of all life.
Every night, until the chill of the birdsong. That damn birdsong. Tweet tweet.
Occasionally, very occasionally, light pierces through the darkness. A beacon, to reach for, to yearn after.
It glistens, it shimmers, but virtually as soon as it appears, it is gone. Brief, very brief.
That darkness is so intense that any light must force a path and the task isn’t an easy one. Within the days, weeks, months and years the light appears infrequently. It is a welcome break from the monotony of the gloom. Lessons are soon learnt. The brightness will not be around for long, cherish it while it remains a part of life. There might not be any more along for quite some time. In the meantime memories are all that remain.
Memories that flutter like litter in a strong wind. A damaged brain simply can’t distinguish old memories from new. Soon the refuse of life becomes one enormous and utterly confusing mixture that can’t be controlled or understood. There just isn’t a sweeping brush large enough to cope with that amount of debris.
Ain’t life grand.
Another morning, another day. Tweet, tweet, bloody tweet.
And then, when the search for any semblance of normality has reached a natural, almost welcome conclusion, it happens…
Sunlight, bright blinding sunlight. It is summer and it’s a summer like no other. It is the perfect storm. Time, understanding, more time, acceptance. Then, a smidgeon more time, a dash of medication, a splash more time, a drop of self-awareness and a sun so bright that no amount of lotion will repel its rays. Even a winter coat won’t manage that much.
The headaches are still striking with fearful regularity, the pain is mostly agonising, now and again, tear-jerking and in rare and blissful moments they are merely just painful.
The sun’s rays bathe all around in their warming glow. The pain matters not, the sun still shines brightly.
‘You have brain damage, and severe brain damage at that.’ The sun still shines.
‘You will never work again.’ The rays of light grow ever stronger.
‘Your condition will never improve.’ It’s warm out there…
‘Fatigue will plague your every waking moment.’ And still the sunlight burns through the misery.
Those words still have their respective meanings, but they don’t matter. The sun doesn’t judge, it doesn’t care. It carries on shining and lighting up life.
The moment seemed so far away. The years had passed by in the blink of a weary eye.
More often than not it had been an Olympic achievement each morning to place a single foot on the floor. The mattress was a much more welcoming prospect when those damn feathered and flying blighters began their detestable chorus.
And slowly, very, very slowly, there is the fresh wind of change in the air.
Acceptance. One single word and a simple concept, yet there had been times when it was so far out of grasp as to be unattainable.
The meaning of the word had been lost, drowned in the rough undulating sea of recovery and the indolence of loneliness.
The dominant feelings were of strain, of illness and their power was colossal. However, the outsider never sees it; they still only see the shroud, the front, the veil that rarely lifts. Time has become irrelevant.
Each day became the same as the next and indeed the one preceding it too long ago to even care. Routine is a cruel mistress.
The wait is over. The time that seemed so unlikely, so distant has now arrived. The light at the end of the tunnel is shining so bright. A bright blue sky has replaced the dark and starry night sky.
Tweet, tweet. And there it is again… The birds are awake once more. The collective alarm clock has tolled; each and every one of the feathered beasts is fighting to be heard. Now, however, it is different. For too long to contemplate the din has been nothing other than a nuisance, albeit a break from one of countless sleepless nights. Something has changed.
Where once lay restless, frequently disturbed nights, peace now reigns supreme. Eight blissful hours earlier the demon sleep at last allowed itself a visitor. The guest needed no second invitation and leapt right in, feet first, head first, whichever first it took.
The wish for acceptance had been granted and was thus no longer a bar to the world of sleep. Along with it had come a sense of self-worth that was previously merely a dream. Ironically.
And still the birds tweet and chirp, ignorant of the impact they were having. They weren’t to know, they’re only birds after all. They’d just carried on tweeting on the odd occasion when they’d be yelled at in the silly hours.
Now, all is different. The song has become precisely that, a song. Where there was once horror, now there is a melody, a ballad. A symphony of nature in all of its glory. Life’s rhapsody of which you are now a part. No longer a bystander, a bit part player loitering in the background waiting for life to grab you by the throat. Now, a time to live.
The birdsong is now wonderfully deafening; the sun is shining as fiercely as it has since the dawn of time. With a yawn, the day is seized. And after one tired roll of the body the warming glow is in vision, in all her accepting beauty.
‘Good morning, sweetheart.’
“I wouldn’t wish it on anyone, but I’m glad my brain tumour happened in a way”
After Helen Bulbeck’s daughter Megan was diagnosed with a brain tumour, the whole family was left isolated with little to no support. Now she is using this experience, plus her own journey with cancer, to help run the UK’s leading brain tumour support charity Brainstrust.
“It was at the time when Rohypnol was doing the rounds in the local pub, so I just thought maybe her drink had been spiked.”
This was Helen Bulbeck’s initial reaction to her daughter, Megan, collapsing after a night out and being omitted to A&E in 2006.
She later realised that it was the start of a lengthy battle, as MRI scans revealed Megan had a brain tumour.
To complicate matters, surgeons opted not to operate unless the tumour showed signs of developing.
And so began Megan’s monthly brain scans, all while she was completing a History of Art degree.
“University was where Megan’s priorities were,” Helen tells NR Times. “The main focus at that point was to get her epileptic episodes under control.
“We weren’t referred to a neurosurgeon until the following January – that’s six months after her first episode.
“We were completely out of our depth; we had no idea what was going on. We had been told in October that she had a brain tumour, but that was it.”
It was the lack of available support that really concerned and surprised Helen.
“There was nothing,” she says, when asked about the help they received after Megan’s diagnosis. “We were just left in a vacuum.
“That’s what I couldn’t understand, because if you’re diagnosed with breast cancer, you’re assigned a clinical nurse specialist. We didn’t have that.
“I spent a long time on the internet trying to find where the support and information was and I desperately needed to talk to somebody about the impact that this diagnosis had, but there was nobody.”
Helen was left on her own in search of a solution for Megan, spending countless hours learning more about brain tumours and possible treatments.
This led her to discover neurosurgeon Peter Black from Boston, who agreed to operate on the tumour after a consultation.
The severity of brain tumours is graded from one to four. Black was the first surgeon to tell Megan she had a grade two tumour, but it could transform into a higher grade within five years, with the consequences being potentially fatal.
With that in mind Megan decided she would have the tumour removed. Because of the risks involved with the surgery, however, the procedure was delayed until after she had finished her studies.
Through all this Helen was fighting her own battle after being told she had head and neck cancer.
She quickly underwent radiotherapy and surgery, knowing she needed to stay strong for her daughter.
“I was just focused on getting fit so that I could go with Meg to America for the surgery.”
Helen was able to make a full recovery, but then faced the challenge of funding Megan’s £30,000 surgery.
Megan’s group of friends were desperate to help and agreed to do some fundraising, eventually smashing their target and generating £70,000.
After this, things finally started to run smoothly. Megan was able to finish her degree and successfully underwent surgery in 2007 which saw her tumour removed.
“We had such a good story and we’d learned so much,” Helen says. “We thought we’ve got one of two options; we can either go back to our lives as they were and donate what we’ve got left to another charity. Or we can use those funds to set up a charity which was going to close the gap in the marketplace.
“Who do you turn to the day you’re told you have a brain tumour? There’s nobody out there and we didn’t want people to feel as lost as we did.”
From this Brainstrust was born.
Starting off simply as a helpline, the charity has evolved into a support trust with UK-wide reach, developing communities to reduce isolation, build resilience and enable people to live the life they want.
It focuses on providing evidence based information around brain tumours and its support specialists can point people to the correct resources, without forcing anything upon them.
“The only other charities that existed at that time were all to do with lab-based research, there was no charity out there where you could pick up the phone and ask for help.
“Because we have that experience, we knew what the information was that people would want to hear.
“Meg and I knew what it meant to be both a patient and a caregiver, so we used that 360 degree perspective to support others.”
Since then Brainstrust has gone on to support thousands of patients and their families.
The vast majority (93 per cent) of those that contacted the charity reported a positive outcome, with nearly 1,000 new patients engaging with it in 2019.
Since its founding in 2006, care around brain tumours has drastically improved.
It is the most common form of cancer that affects those under 40 and it is one that is rising at the fastest rate in over 65s.
Discussing how attitudes to brain tumours have changed, Helen says that new technologies can lead the way to better outcomes.
“Your first line treatment with a brain tumour should always be, where possible, neurosurgery. That was what saved our daughter’s life.
“I think the technology is absolutely key and probably until the last five years, that’s been hugely ignored, but it is catching up.
“In terms of the actual therapies, I think with radiotherapy we’ve made huge advances.”
Despite this progress, Helen says there are still huge differences between the treatment of brain tumour patients and those with other cancers and conditions.
She draws on the example of post-stroke rehab and the general care stroke survivors receive.
“Stroke patients get a wonderful wraparound reablement service and I’d love to see brain cancer having a parity.
“I find that some of the attitudes are a bit nihilistic, as in if you’re diagnosed with a glioblastoma people tend to see this as life limiting with a poor prognosis so it’s not worth investing in. I think it absolutely is.
“That’s the one thing I would love to be able to transform, the day somebody has a brain tumour,
they immediately get that same wraparound care.”
Megan is currently living a happy and healthy life since her surgery, being able to get married and gifting Helen with two granddaughters.
She still undergoes regular brain scans and, after becoming a qualified coach with Brainstrust, she is now training to become a psychodynamic psychotherapist (a discipline involving the interpretation of mental and emotional processes rather than focusing on behaviour).
Reflecting on her journey Helen describes her pride in the work they had done so far, but admits there is still much work to be done.
“It’s been a highly emotional rollercoaster at times, we get very tired but it’s not a job it’s a vocation.
“It’s important not to forget that before we’re patients, we’re people and I think the more we can get clinicians to recognise that sitting in front of them is a person not a patient, then that person is going to be much more resilient.
“Just hearing the testimonials of the impact that our work has had is what keeps us going.
“I will always remember Meg saying to me ‘I would never wish a brain tumour on anybody, but in a way I’m glad this has happened because of what we’ve achieved.’”
Loneliness in lockdown – how have survivors been impacted?
Loneliness in lockdown among brain injury survivors is the subject of a new research study which hopes to shine a light on the ongoing issue of isolation.
While loneliness for the wider population was something rarely previously experienced prior to the COVID-19 pandemic, for those living with a brain injury, the everyday reality is often very different.
And through this new study, researchers hope to discover the true effect the pandemic and its necessity for survivors to stay at home – and in some instances shield for several months – has had and how their protective factors have impacted on that.
The project, by the University of Sunderland in conjunction with Headway, is currently gathering participants for its pioneering research, which will compare the experiences of people living with brain injury to those without.
Led by Dr Stephen Dunne, who has a long-standing research interest in social factors which affect brain injury and stroke survivors, he hopes it will both raise awareness of the ongoing issue of loneliness many people face, as well as helping to inspire action.
“There is a dual focus to this project – loneliness is something known to the masses now more than ever before; it’s not just something felt by a particular part of the population. For a neurotypical individual, I think it has shown what life can be like to be lonely in ways they may never have known previously.
“An important point of our research is to try and understand how, for people with brain injury, their loneliness and their perceptions of loneliness have been affected during the pandemic – has this been heightened over the past year and been exacerbated by lockdown?
“Or have they actually felt less lonely than neurotypical individuals, as they have had the experience pre-pandemic of adapting to life like this, and already have the support strategies in place?
“But crucially, the future of this project isn’t to define loneliness, understand its impact, then drop it – we want to understand it so that we can facilitate the removal of barriers so we can bring about strategic improvements to the wellbeing of people living with brain injury.”
Dr Dunne and his team are seeking brain injury survivors nationally to take part in the research, which will be done by a survey: https://sunduni.eu.qualtrics.com/jfe/form/SV_czH5B8R5kieDgQR and an optional additional interview with the team remotely via Microsoft Teams.
“We’re at a crucial stage now where we appear to be coming out of restrictions, but the experiences of the past year are still very real for so many people,” adds Dr Dunne.
“We want to do this at the right time, before reintegration into society starts to happen and we are looking retrospectively, so we’re keen to hear the experiences of as many people as possible.
“We want to better understand loneliness and its impact, so we can help to bring about change for the future. Understanding the journey of brain injury survivors over the past year is a key part of us being able to do that.”
For further information about the research study, or to share experiences through an interview with the research team, contact Stephen.Dunne@sunderland.ac.uk
Temporary concussion substitutes ‘must be introduced by June 1’
Temporary concussion substitutes must be included in the current trials underway in the Premier League to safeguard the safety of players, players’ unions said today.
FIFPRO and the PFA have called for the introduction of temporary substitutes no later than June 1, and for the scope of the 18-month trial – which enables a team to replace a player who has sustained concussion, but on a permanent basis – be extended to include parallel trials for temporary substitutions.
In an open letter to IFAB, football’s lawmakers, FIFPRO – which represents over 65,000 professional footballers worldwide – and the PFA highlighted the cases of West Ham United’s Issa Diop and Sheffield United’s George Baldock in making their case.
“Player safety and welfare is paramount, and should be the only priority,” they say in their letter.
While both bodies were supportive of the permanent concussion trials when introduced, such incidents – added to the new FIFPRO poll, which shows 83 per cent of 96 professional football club doctors at top-flight European club believe temporary substitutes should form part of future protocol – have shown that action needs to be taken.
“In England, since the trial began, we are aware of two incidents where a temporary substitution option would have better protected players,” states the letter.
“In each case, the players suffered from a head injury but, following an initial on-field assessment, continued to play. They were subsequently removed when it emerged their head injury was worse than first thought.
“These cases underline our concern that permanent substitutions do not give medical teams the appropriate environment to assess a player with a potentially serious head injury.
“The reality of the in-game situation is loaded with pressure. Medical teams can be presented with a situation where a globally broadcast match is on hold, awaiting their assessment. They have to make a potentially game-altering decision in a multi-billion-pound industry.
“We have no doubt medical teams act in the sole interests of the players. However, the rules do not do enough to support medical personnel. Pressure on them will be amplified with the return of crowds.”
The letter states that the inclusion of temporary concussion substitutions, which they propose should be tested in parallel with the current trial, will:
- Provide medical teams with additional assessment time
- Allow for the assessment to take place in an appropriate environment
- Permit a match to restart with neither side numerically disadvantaged
- Reduce pressure on players and medical staff to make quick decisions.
“In December 2020, we welcomed the decision by IFAB to invite competitions to trial permanent concussion substitutions,” FIFPRO and the PFA state.
“At the same time, we have remained in favour of testing temporary concussion substitutions. This has been our position for many years.
“Since the beginning of IFAB’s permanent concussion substitute trial, we have seen several incidents where the new laws of the game have fallen short of their objective and jeopardised player health and safety.”
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