Kneeling on the bed in the early hours of the morning, I cradled my boyfriend Tim’s head in my lap as his body shook violently, his legs jerking and arms flailing.
I put a hand behind his head to stop it banging on the wall and with the other, held his clenched fist to stop him punching himself in the face. It was last August and I felt surprisingly calm as I helped control his condition. I was pleased I’d caught him before the force of the electricity surging through him propelled his 90kg body out of the bed and on to the floor.
But then the blood came. As it started running out of his mouth and dripping on to my leg I began to cry. There was nothing I could do to stop him biting his tongue. I would have to wait until the seizure ended and cruelly on this occasion, it seemed to be taking its time.
The very first time I saw Tim Reedy he had a black eye. It was June 2012, we were both 39 and we’d arranged to meet after exchanging emails on a dating website.
As I stared at the purple bruise that spread to the cheeks of his perfect olive skin he told me he’d banged it on his bedside table having fallen out of bed. “I have epilepsy and I had a seizure,” he told me matter-of-factly, before nipping off to get a menu.
I mulled it over and when he returned, I asked a few questions, but Tim seemed unperturbed by the damage to his face. “Oh, I’m always falling out of bed,” he said with a shrug. So I shrugged it off too.
I certainly didn’t want to spend our first date discussing chronic health conditions. We had a brilliant evening. I really felt as though something had clicked between me and this clever, funny man.
It wasn’t long before both of us realised we were embarking on what would be a long-term relationship. Yet the epilepsy was never going to go away and I soon discovered, it could never be ignored.
According to the World Health Organization (WHO), around 50 million people worldwide have epilepsy. It’s a neurological condition in which nerve cells release abnormal bursts of electricity into the brain. It has a number of triggers and causes that are most often related to some sort of brain damage, injury or genetic condition. According to WHO, one seizure does not signal epilepsy (up to 10 per cent of people worldwide have one seizure during their lifetimes).
For Tim it developed after being struck with meningitis the summer before he turned five.
It was 1977, the year of the British Queen Elizabeth’s Silver Jubilee, and while children his own age (including me – there are only four months between us) celebrated her 25-year reign with street parties, he was stuck in hospital.
Meningitis is an infection of the membrane that surrounds the brain and spinal cord. As well as epilepsy, it left him with severe hearing loss. Within two years he would be completely deaf.
By the time I met him, Tim had lived with epilepsy for 24 years. And while the eight pills he takes each day minimise their frequency, regular seizures are inevitable.
In the first year of our relationship, we saw each other mainly at weekends. Every now and again he’d cancel our plans as he’d woken that morning bruised and on the floor next to an upturned bedside table, having suffered a fit.
I felt utterly helpless and of course was worried and upset that he had hurt himself.
Yet at the same time I was angry that this condition was robbing me of precious time with Tim.
Only occasionally did the seizures happen when we were together and when they did they were relatively small. Until I saw Tim experience a major episode, I couldn’t sympathise fully with his suffering.
A single seizure can sap as much energy as running an entire marathon, so afterwards all he can do is sleep. It also leaves him with an excruciating migraine and stiff muscles for days. Add to that the injuries sustained from colliding with furniture and the painfully deep carpet burns and Tim wouldn’t be out of bed for a day. It could take three or four days for him to recover.
In September 2013, Tim moved into my flat in North-East London. We loved spending evenings together and settled into a rhythm of cooking, watching films and playing chess.
Knowing his epilepsy tends to occur at night I seizure-proofed the bedroom as best as I could. I put protective foam on the sharp corners of wooden furniture, insisted he slept on the side away from the window and kept the floor free from objects.
He gave me a list of his medication and explained that, in an emergency situation, this would be one of the first things a doctor would ask for.
My first hands-on experience of Tim’s epilepsy happened six weeks after he moved in. It was the weekend of his birthday and we celebrated with a meal with friends.
In the early hours of Sunday morning, Tim experienced a massive seizure. I held on to him as his back arched like a cobra’s; his body’s response to the sudden burst of electrical activity in the brain.
“Tim, Tim, Tim!”, I repeated, desperate for some response. But he was unconscious and his glazed green eyes looked right through me. After what seemed like an age, he stopped moving and fell back on to the bed. Relieved it was over, I tried to get back to sleep. I must have dozed off, as next time I awoke Tim was face-down on the floor with a trail of blood on the carpet. I tried to find the source of the wound but was scared to lift his head. I rolled him into the recovery position but he was a dead weight. I panicked and called 999. By the time the paramedic arrived I was hysterical.
After completing some checks, the paramedic hauled Tim back on to the bed. His face was covered in blood – he’d bitten his tongue. Then the ambulance arrived. Tim had never liked the idea of recuperating in hospital, yet I knew there would be a chance that he’d wake up in a hospital ward. I handed the ambulance workers his list of medication and told them about the Friday night celebrations. They decided Tim was in no immediate danger and said the decision to send him to hospital lay with me. Was I, they asked, confident that I could cope with his recovery? I said yes. I was convinced the worst was over.
Tim spent the whole day in bed while I busied myself. Then around 5pm, I heard an almighty thud. Heart beating, I raced into the bedroom and found him once again on the floor.
I panicked. Why had I refused the offer to take him to hospital?
He came round quickly and I managed to get him back into bed. Then I placed every single spare pillow, blanket and duvet on the floor to cushion his blow if it happened again. I endured a sleepless night but thankfully there were no more fits.
Sometimes my anxiety gets the better of me. One day when I couldn’t get hold of him, I reported him as missing. I was convinced he’d had a fit in the street. In fact, he’d been stuck on a London tube train with no mobile signal. Another time, I was asleep when I felt his body thrash. Quickly I embraced him in my arms only for him to shrug me off – he’d been untangling his legs from the bedsheets.
Tim tells me not to worry. He says the seizures will happen when they happen. He keeps himself as healthy as possible to ensure he’s physically fit for whenever they do.
As time goes by, all relationships settle down and the honeymoon highs are replaced with calmness. We bicker like any other couple but epilepsy prevents me from ever taking Tim for granted. Whenever he suffers a seizure, especially when it leaves his face bloodied and wipes him out for days, it’s like seeing him emerge from a terrible accident; one that leaves you thinking: “Please get better. I promise I’ll never be horrible to you again if you do.”
But then I watch him bounce back and slowly I’m beginning to accept that with time, he will get better.
Tim is open about his epilepsy. He’s a cartoonist and illustrator and has been known to feature it in his work. We both agree that the more it is talked about, the less of a stigma it will be.
We’re both 42 now and planning our future together. We hope it includes children and travelling the world. We’re determined to not let the epilepsy stop us from fulfilling our dreams.
What is epilepsy?
Epilepsy is a chronic noncommunicable disorder of the brain that affects people of all ages.
It is characterised by recurrent seizures – brief episodes of involuntary shaking that may involve a part of the body (partial) or the entire body (generalised) and sometimes accompanied by loss of consciousness.
Epilepsy is defined by two or more unprovoked seizures and is one of the world’s oldest recognised conditions.
The most common type – for six out of 10 people with the disorder – is called idiopathic epilepsy and has no identifiable cause.
The causes of secondary (or symptomatic) epilepsy could be – brain damage caused by a severe blow to the head, a stroke that starves the brain of oxygen, or an infection of the brain such as meningitis.
Nearly 80 per cent of the people with epilepsy are found in developing regions of the world.
Epilepsy responds to treatment about 70 per cent of the time, yet about three quarters of affected people do not get the treatment they need.
For example about nine out of 10 people with epilepsy in Africa go untreated.
People with epilepsy and their families can suffer from stigma and discrimination even today.