Living With Hidden Disability After a Brain Injury Copy
May I introduce myself. Once my name was Andy Nicholson and once, I was just your normal, average, run of the mill man. Name your cliché really. Twenty-five years old, with all the relevant life experiences that a quarter of a century of life brings. School, peer groups, family, training, jobs, it was all there.
However, although my name is still Andy Nicholson, there is a distinct difference. I am a further 25 years old, though the life experiences the second quarter-century has given me are only understood by a significant minority.
On 9th December 1994, I fell, and I fell hard…
I had left school at 16, an underachiever, a juvenile, an immature young boy with no real sense of purpose and absolutely no direction at all. I fell into a “career.” I say career in the loosest and quite wrong sense. I trained to become a hairdresser, achieving that goal three years later and duly left to start work on building sites. As a builder, not a hairdresser, I can confirm.
I was 19 years old and working on building sites. I was trying to make my way while hiding the fact that only weeks earlier, I’d been elbow-deep in perm solution and the problems of purple-rinsed octogenarians. I may not have possessed drive or maturity, but I did seem to be able to put on a front, to be accepted. It was an exceptionally good thing I had it too, because building sites are notorious for their lack of leg-pulling, savage banter and general mistrust of anyone who does not fit the norm. Oh, wait…
I put on the front for five years, on a variety of building sites dotted around my locality and sometimes further afield. I was officially a “ceiling fixer and dry-liner.” I was responsible for erecting those hideous paper-thin walls in homes and offices that fail to mask a mouse fart in an adjoining room. On other days I fixed the hanging tiled ceilings so familiar in shops, hospitals, offices, etc. About 50% of my working life was spent eight feet in the air handling sharp metal, fiberglass and tiles made from a variety of ingredients designed solely to react with human flesh on sight. Just when I thought it could not get any worse, I will be blunt, it did.
In 1994, the U.K. building trade was in a slump and regular work was difficult to find. Thousands of builders were looking to the stars and wishing there was a place where an entire nation was pulling together to rebuild almost from new. A rebirth if you will. If only such a place had existed. And then the phone call came, from an old colleague.
“Andy, if you’re interested, I’ve been offered a job for myself and a mate. It’s steady work, the money is great, and I can see it lasting at least a year.” Too good to resist.
“I’m in, where is it?”
“East Germany, Leipzig.”
And there it was, my life changed in an instant, though I was not to know to what extent for six months. I made my way to the old East Germany, a mere five years after the fall of the Berlin Wall; in fact, anniversary celebrations were in full swing the night of my arrival. In with the new and out with the old was the mantra that prevailed across the country. It was to ring true for myself too.
Work began, money was earned, friends made, troubles overcome, trips home to Blighty sporadically occurred. Germany became normality. And then…
The 9th of December, 1994. 6:30 a.m. I walked into a house on a building site in Markkleeburg, Leipzig. I was looking for a ladder we had been using the previous day. A simple task and yet the duty that would ultimately change my life forever. The building had a cellar and nobody in charge had thought to place safety barriers around the seven-meter drop into the depths of the house. That tiny detail coupled with the cold, dark December morning were hardly conducive to the safety of the workers on the site. And so, it came to be that I reached into the lucky dip of life and drew the shortest of short straws.
I did not know it, I don’t remember it, but I’m told I must have dropped like a bleary-eyed, pasty-faced British builder looking for a ladder and still yearning for his first coffee of the day. The next time I would drink coffee would be six weeks later and I would be using a plastic cup with a spout, the kind normally associated with toddlers.
I had landed on my skull, hard. As I slipped into unconsciousness and a four-week coma, a piece of that skull was wedging itself into my soft fleshy brain. A coma is a strange place to be. It is ultimately a living death — a demise I escaped after four weeks with the opening of an oblivious eye. The new life that greeted me was the beginning of the second 25 years of my life. A new world, a new normal.
“He has sustained a brain injury, and a severe one.”
My family was told the news in a mixture of pidgin English and harsh Teutonic tones. “We don’t expect him to make it through the night.” And that was the beginning. Happy Christmas.
Nine weeks later, after a coma and a lengthy spell of total confusion, I returned to England. Let battle commence. Because here lies the problem and the issue I have been trying to raise and have acknowledged for decades. And I am not alone…
I have brain damage; it will affect me for life. I am now partially sighted, with no peripheral vision on my left-hand side. My coordination, once again on my left side is shot. I experience crushing headaches. The specter of epilepsy appeared nine months after my accident as a direct result of the scar on my brain. I am cerebrally fatigued 24 hours a day. And that is just scratching at the tip of a large iceberg.
However, should I be standing before you now, you would never know. When disability cannot be seen, can it be believed? When a tree falls and nobody is there to see it, does it make any noise?
Yes, yes it does. Sometimes though, it must fight to be heard.
For 26 years now, I have been living my “new normal.” That normal is an overwhelming feeling of illness and fatigue 24 hours a day, 365 long days of the year. It’s one vast ocean of sickness, undulating waves of migraine, of seizures, of disabling tiredness, of confusion, of instability, of frustration, of loss. And still, the outsider would never know, and in far too many instances does not really care to know.
And that’s where I come in…
Four years ago, in a bid to give a little back, I hit upon the idea of making a short film about brain injury. In a few minutes, with the help of my wife, I did just that. A Bob Dylan-esque style film was devised of myself holding up sheets of paper describing what it is like living with a brain injury or other hidden disability. The film is titled “Some People” and has been viewed on my Facebook page over 200,000 times alongside another few thousand views on Youtube and Instagram. From there on, the page took off. I invented my alter-ego, “The Brain Damaged Baron,” and set about making many more films. Each one is simply me talking to a camera about aspects of life from the viewpoint of a disabled man who was once fit and healthy.
The page grew as more and more people in the same boat saw the films and realised that they were not alone. In the third year of film making and awareness raising, I had the idea for “Walk With The Baron.” During my recovery and certainly since I met my wife, walking had been my own choice of exercise. My partial blindness and epilepsy had consigned my driving license to the bin of irrelevance incredibly early on, and thus Shank’s Pony was the only option. Our walks grew in length, health permitting until we decided that Walk With The Baron would be a full marathon, 26 long miles. Word spread through my page and there were many walks in the U.K., one in Switzerland, three in the US, two in Australia and one or two others in random areas of the world.
The walk was always designed to raise awareness, but my home walk in Lincoln raised in excess of £1500 for Headway U.K. The others raised similar amounts for their own relevant charities. I was humbled and delighted when Headway U.K. honored me with the award for Achiever of the Year presented at the Dorchester Hotel in December 2018.
I could not stop there and thus Walk 2 a year later raised over £2500 for the Rehabilitation Unit at my local hospital where I was treated all those years ago. I have been interviewed over the years many times on both local radio and television discussing that oh-so-needed awareness. However…
Despite the trauma, despite the scar on my brain, despite the lengthy treatment, the fight goes on. In many ways, it never really began. Because, you see, I look fine and therefore, I must be. How does your average person in the street see me? Not to mention the thousands of others just like me being tossed around in that boat. Awareness? I/we have an awfully long way to go.
Currently, we find ourselves in the era of Covid. But many of us with hidden disabilities were isolated long before the pandemic, and even when it is at long last a memory, the fight for all of us aboard HM Hidden Disability will still go on. And few will listen, few will believe us and many simply will not care.
Where is the platform for people like me to spread awareness, to educate, to be heard? I have been shouting from the rooftops for so long that my throat is hoarse. Where are the MPs who care? Where are the reporters willing to tell the story? I’m so tired of the fight, I’m dragged down by the indifference and I’m utterly exhausted by the willingness of the silent majority to accept that I don’t exist. And by default, nor do those hundreds of thousands of people being thrown around the decks of HM Hidden Disability.
Brain injury and chronic hidden illness can feel like a pandemic that never ends. I have a story; I like to think it’s a story that needs to be told. If not for myself, then for those thousands of souls being cast aside and ignored every single day. Are you willing to listen? Are you prepared to help?