"I am The Brain Damaged Baron. I was once a happy go lucky young man, finding his way, until the event that lead me in an entirely new direction. While working on a building site in Germany, I fell down an unconstructed stairwell and landed on my skull. I woke three weeks later and my life had changed forever. Now brain damaged, suffering with epilepsy and numerous other ailments caused by an enormous scar on my brain, life must go on. But not around me, with me as an active player."
Andy Nicholson, The Brain Damaged Baron
Lincoln, United Kingdom
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,’
‘You’ll never walk again,’ or…
‘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, forever and a day the truth can never be seen. Just like that building, the damage done 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 wont manage that much.
The headaches are still striking will 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.
It’s 4:37 Am.
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.’
Tweet, tweet, tweet. Good morning world, how are you today? The sweet birdsong knows no snooze function. Another day, another dollar, yet another trial. Bleary eyed, weary heart, the daylight is calling you once again.
Eight hours sleep? It’s a myth, a rumour; an old wives’ tale designed to frustrate, annoy, or even, to anger. There’s more chance of plaiting jelly than there is of drifting through the night in blissful slumber. Instead, there is a never ending cycle of an hour here, an hour there, punctuated by varying degrees of exasperating insomnia. From brief minutes that seem to only exist in order to prevent prolonged sleep, to hours of quite staggering consciousness. The frustration only prolongs the agony.
That myth slips ever further from the grasp with every passing night. Eight hours sleep? If only. You can barely remember the last time. An irony if ever there was one.
And then, the weary eyes open, the even more fatigued brain attempts to clear a route for the days tasks that lay ahead of you. Those pathways have become overwhelmingly cluttered with simple undertakings such as, well… functioning. Awakening becomes an issue, a chore.
Task one. It must never be forgotten. Let it slip from the mind at your peril.
Medication. It sits on the bedside table like a tribute to all that has gone before. A tiny bottle, containing even more diminutive objects. And yet, it is a monolith, a monument to the day that changed everything. The tablets soon find their way into the blood stream and set about their dependable work. The tiny capsules are your best friends, your comfort blanket, your crutch through life. Without them, the nefarious headaches and the sporadic visits to the land of epilepsy would interject into the day with gay abandon. They must be stopped.
Well, you can try.
Epilepsy is a most confusing world to be a part of. So often the landscape is unchanged, the world keeps turning, and people continue with their day to day business. Everything is just as it should be. The intricacies of existence continue unabated.
From nowhere the horizon fades and the sky starts to turn. Then it spins, slowly at first, becoming ever faster as the oncoming seizure takes a hold. People talk but can’t be heard, wind blows but can’t be felt, the sun shines but the light can’t be seen. Life becomes a kaleidoscope, a whirling maelstrom of insane confusion in your mind. Nothing makes sense, absolutely nothing. And then, just as the mind can’t take any more punishment, the body just might join in the ‘fun’. A twitch here, a jolt there. Another twitch here. Another jolt there. Soon the brain has ceased to be able to control the body in any way shape or form. The twitches become excruciating shudders, the shudders increase in their ferocity. Intense pain battles to dominate the mind. The painful trembling is only masking one simple truth. You can feel and hear your own heart attempting to beat with such ferocity that it may just leap out of your body. It’s a war twixt agony, confusion and visceral fear. Just as the shaking takes over the body completely…
Darkness. Terror is finally overcome by a shroud of unconscious oblivion. It won’t last long.
Into the void…
Light. Fierce, extreme, blinding light. It careers into the eyes and crashes into the mind like a runaway train. Post seizure is a violent world. Any diversion from darkness is a voyage into a world of intense pain. And what of sound? Sound is the worst nightmare, the devil with a loud haler. Pain; agony you will beg to be free from. You are acutely conscious that there was a reason for the blackout just at the point where every muscle in your body could take no more punishment. It was to allow Beelzebub the chance to steal your misfiring brain. To pilfer and replace it with something that feels akin to a red hot brick. Any movement of the skull, any movement at all causes the brain to shake and vibrate like a rattlesnake on a sugar rush. You can feel all too clearly the brick crashing against your skull. You beg for it to stop, silently. Sound was once your pal, a series of waves enlightening the brain to the noises occurring in the world around. However, post seizure, sound waves are shards of glass, missiles of burning coal that hurtle into the brain. They cause pain so severe that you are easily convinced it will never cease. Ever.
Pain, confusion, the seconds tick by. Those seconds become minutes and reality dawns. Confusion is replaced by the truth. You’ve suffered yet another seizure. But then, darkness again. Only this time it’s not due to an impromptu bout of blacking out. This time; only sleep exists. Every thought in your mind, every shred of your life centres solely on the desperate yearn for recuperation. And this time there WILL be eight hours of uninterrupted slumber. Eight hours and in all probability, beyond. The body simply must rest. The exertions have taken their toll in the most extreme sense.
Goodbye world, wake me when it’s over. Please.
Into the void.
You’ve been unconscious for what feels like days, time is suddenly irrelevant. Sleep kidnapped your awareness and swept away all before it. There was never to be any escape, it simply wasn’t possible. You couldn’t have fought it, even if you’d had even the tiniest inclination to. Now though, the seizure has been and gone and only the scars remain. Fortunately, that monument beside you remains in place, unmoved. The sweet nectar of medication soon enters the blood stream once more. The pain will drift away into memory, eventually. With a little luck, the pills will extinguish the pain that remains. Vague memories blur your reality. Hazy recollections of what went before soon bring about stark reality.
Yes, Epilepsy is a strange and confusing place. Thankfully you won’t be visiting again. For a while.
Minutes turn into hours, hours to a day, maybe two. Real life, or real life as you know it returns. You have little memory of the previous hours, little or none. However, there is only a slight difference twixt a post seizure world and normality as you know it where memory is concerned. The memory is a muscle, apparently. Frequent exercise strengthens it, helps to prolong and strengthen the ability to recall information. However, what if the muscle has been violently injured? Bruised and scarred like old fruit dropped from a great height. What then?
There are times in life, far too many to mention, they number in their thousands. You struggle to remember a detail. A name perhaps, a moment in time, an event, etc. That struggle may lead to frustration, intense irritation at the inability to recall. Now though, the horizon has changed. The distance to the far off reaches of your memory has shrunk inward to an entirely new vanishing point. What was once a capacity to search deep into the far recesses of your mind now struggles to even open the doorway to those same alcoves.
Two minutes ago, one hundred and twenty seconds, a tiny speck in time. Barely worth noting. It’s no longer true however. Now, your memory has imploded, collapsed inward alarmingly. There are no longer boundaries, no defined margins within which the memory presides. The short term often becomes unattainable. There is no forewarning of exactly when the mind will cease to attain full recollection. And there is no logic behind the timing of the anomalies; if there were, they would be almost understandable, bearable, even. Those one hundred and twenty seconds become an eternity. What occurred only brief moments beforehand may as well sit firmly in a different age in time. But it’s fine, it’s not a worry. You have a lifetime of recalling mundane moments in time; names, dates, events, putting the kettle on, running a bath, putting on both socks. It is only a matter of time until recollection thrusts its way to the fore…
Sadly, it really isn’t.
Some people exercise by walking, others by jogging. It may even be their ‘thing’ to frequent a local gym in order to work up a sweat. Each to their own. Whatever the chosen form of exercise is, the mind and body will only benefit from the effects. It comes as a great surprise to learn that simply remembering where you were an hour ago can completely wipe you out, leave you shattered, completely spent. Flexing the memory muscle was once second nature, a part of life to which you never gave a passing thought. Now you are left scrambling for memories as your brain takes more time to connect that a dial-up broadband connection downloading a full length film. And just like that buffering, eventually the connection might not even complete the cycle, leaving you angered, annoyed and hugely frustrated. Occasionally a thought slips so far from the mind that the efforts to retrieve it can you leave you in exactly the same boat as you found yourself drifting back in post seizure world. By now you are sick of the sight of it, sadly there is no other option…
Into the void.
Emerging from the involuntary cocoon, at least your verbal dexterity can convey your emotions. It’s been some years now since you managed to grasp the skill of conversation. Even at five years of age you could make your point; albeit that you wanted food, the toilet, or sometimes both. Now, some decades later, the skill still remains. Ironically, so does the infrequent need for food, the toilet, or both. Part of your internal dictionary is the word ‘glitch’. Only now you have no need for a definition. Glitches are thrown randomly into your dialogue for no apparent reason.
Say hello to aphasia.
It’s a common theme after a traumatic brain injury. You can search in vain for the words hiding away somewhere in your educated mind. In an even crueller twist, at the precise moment you recover the word you were looking for, your mouth refuses to play the game.
The ‘braumatic train injury’ is a bit of a trickster, it seems. Or, a tit of a brickster. The rotten sod.
Still, at least you’re awake. That alone is a bonus. Fatigue curses your every waking moment. It comes as no surprise. Part of your brain has been irreversibly damaged, you know that much. What takes time to realise is that it is still performing the tasks to which it is well used to. Now though, all is different. The remainder of your brain is also deputising for the damaged section. Less brain doing far more work every single second of each day. Tiredness, you’re fighting it constantly. The overload is unremitting, the stress, enormous. Your vision may be affected, the brain compensates. Hearing not what it was? More compensation. Balance shot? More strain and more burden. The headaches that dominate your life are worsened by the ongoing fatigue. Into the void? Not yet, you can’t afford to sleep forever, you’re not ready for that level of blackout. Not just yet. There’s a life to be lived.
For the rest of that life you are faced with the daunting prospect of relying on a smorgasbord of potions to get you through each day. It’s a small price to pay. You are however safe in the knowledge that your memory is so poor you’ll probably forget you need to take them anyway. And that’s if you can stay awake long enough to function.
It’s maybe not life as you knew it, but now, it is your life. Each of the obstacles you now have to face since your injury must be adapted to. They are simply hurdles you have to clear, problems you have to face. But then everybody has their problems in life don’t they? You are no different in that respect.
At least you have your sense of humour and it gets you through. Smile, because if you don’t, the other option doesn’t seem bearable.
by ANDY NICHOLSON