Q&A: Damien Coyle - "My memory was really excellent before I had my brain haemorrhage but now has more in common with the proverbial sieve"

My morning routine follows the same pattern. My alarm goes off one hour before I need to get out of bed, simply because that’s the amount of time I need to get out of bed each morning. I had a brain haemorrhage and a vestibular disorder that impact my balance so I wait for a carer to arrive to help with socks and shoes. Once that’s done, I hop in the car and drive to work in Belfast.

I never keep to my meal plan and my eating pattern is absolutely atrocious, so I usually miss breakfast.

Some days I skip lunch, too...

This is often my only meal of the day and will be mainly vegetarian-based, occasionally served with fish.

Nutrition is important to me but I don’t take any supplements.

I have been on diets in the past that worked and others that failed miserably. I’m trying to eat more healthily at the moment by cutting out bread and potatoes and reducing portion sizes. I have a more sedentary lifestyle these days and have gained a lot of weight. Crisps are my downfall.

I look forward to Friday nights when work is over and I can sit down and relax. I try to get to arts events or go to the cinema most weekends.

I am hoping to get to the point where I’m able to go back to the gym and do a bit of more exercise. Physical exercise is something I miss as I was used to being at the dojo two or three times a week. I’m challenging myself intellectually by trying to improve my memory which was really excellent before I had my brain haemorrhage but now has more in common with the proverbial sieve.

I would love to be able to walk more, but I accept I’m on a long, slow journey to rebuild that skill.

Team sport didn’t hold my interest and I was more interested in one-to-one sport like judo and karate. I continued with my interest in martial arts until health reasons intervened. My children were involved as well and they both achieved their black belt by age 11 – I was a proud dad.

I have refined my interest in booze down to Guinness, red wine or a gin and tonic when I’m on holiday.

I used to be a ‘stairs’ person, but the impact of my brain haemorrhage means I have difficulties with them – the problem is balance and fatigue. I find lifts claustrophobic but they’ve become a necessary evil.

Your Brain on Art by Susan Magsamen and Ivy Ross.

I don’t ‘do’ Netflix. I do Amazon Prime and will watch anything sci-fi-related. I recently spent the weekend watching the whole series of the Star Trek spin-off, Strange New Worlds.

That I am more self-sufficient and resilient than I thought.

My focus has been on trying to rebuild some of the skills lost, so I’m investing energy in painting and languages.

I try to practise meditation and mindfulness to help keep my mental health and wellbeing in good order. I also like to cook Chinese or Indian meals and find it a good way to deal with stress.

Personal goals include increasing the distance I can walk, do more painting and taking a holiday. As CEO of the University of Atypical for Arts and Disability, I’ve been working on the Bounce Arts Festival, so that is an important goal in showcasing the work of d/Deaf, disabled and neurodiverse artists.

A brain haemorrhage impacts on sleep pattern – alongside chronic fatigue – and this, along with the fact that I'm neurodiverse, means there are times when I’m not able to sleep as my brain is over-processing. Sometimes I’m not in bed until 3am but at other times I could go straight to bed after work and sleep 10 hours straight. On balance, though, I don’t get enough sleep but I expect to have a long one once the Bounce Arts Festival is over.

I sometimes sound like a broken record raising issues about the inequalities, lack of real access and exclusions experienced by d/Deaf, disabled, and neurodiverse people. One of the key issues is their low representation in the workforce. I believe this is something the government needs to seriously address as it is a poor reflection on our society. My regrets are too many to mention.

My priorities now focus on my own wellbeing and ensuring that I can have as healthy a lifestyle as possible. Many stroke survivors live with the concern of having another stroke, so positive lifestyle change is important.

Coronavirus gave us the opportunity to reboot our lives and for me this was compounded by having a brain haemorrhage just after the second lockdown. It showed me the importance of socialisation in our lives. Contact with other people was really important and the pandemic created the opportunity for me to invest more time in relationships that are important to me – especially with my own family in Co Tyrone.