Dave McTernan talks about living with epilepsy
“A woman said ‘people like me shouldn’t be allowed on public transport’”
Dave McTernan is an Edinburgh native who has spent all of his life in the capital. Dave has epilepsy and is prone to frequent, unpredictable seizures that have become part of his everyday life.
He was diagnosed at 17-years-old, and as a result has never been able to drive a car, meaning he’s spent a large part of his life reliant on Lothian to go to work, meet friends, and of course attend hospital appointments to manage his condition.
“I’ve used Lothian Buses my entire life,” Dave explains. “I remember when they were LRT [Lothian Regional Transport] so it’s been a long, long time!”
Due to the complex nature of Dave’s condition, using public transport makes him apprehensive. His seizures can come on at any time, which means he only uses the buses when he really needs to, and will never go on a bus unaccompanied.
“I have three types of seizures. The first is clonic jerking, which doesn’t affect me that much, other than I may throw stuff around the room occasionally,” he explains.
“I also have focal seizures, which are the type where there’s not much movement. Instead you’re in a sort of dream state where you’re out of touch with the world for a brief time.
“Lastly I have tonic-clonic seizures, which are the kind everyone automatically thinks about when they imagine an epileptic seizure.”
Throughout the pandemic, Dave has been pretty isolated, however he did travel on a bus once during the first lockdown.
“It was scary, although admittedly, at that point in the first lockdown everything was rather scary for everyone!” he says. “The majority of people adhered to the rules, such as wearing a mask. Sadly, there were one or two who didn’t. This added to my nervousness about using public transport.”
Dave is able to wear a mask, and does so to keep himself and those around him safe while travelling on the bus. Although he knows he’s following all the rules and is doing what he can to take all necessary precautions, one of the biggest concerns he has about using public transport is the behaviour of other passengers.
“Using the bus makes me extremely anxious. Going out at all makes me feel that way, even before the pandemic,” he says. “If I do happen to have a seizure, how other people react to it is the biggest problem for me.”
Dave has suffered many seizures on our buses, and sadly on some occasions he’s been met with disappointing reactions from his fellow passengers.
“It was a focal seizure that I had,” he says of one such occasion. “A woman sitting nearby noticed, and despite my partner explaining what had happened, the woman said that ‘people like me shouldn’t be allowed on public transport’.”
Most of the time Dave will come around from his seizures naturally, however in extreme circumstances he will require medication or medical assistance from paramedics. For this reason, he carries medication on him at all times, never knowing when a seizure will happen.
Often, he’s discovered, anxiety can be a trigger for his seizures. For this reason, Dave believes more awareness is needed for other customers on buses surrounding hidden disabilities like his.
“Maybe some signage on buses, reminding people of hidden disabilities would be a massive help,” he suggests. “I use the priority seats as often as I can, unless someone boards the bus who clearly needs it more than me. There’s more room on the priority seats, so it’s actually safer for myself and others if I have a seizure on a bus.”
Dave believes that the message is getting out there, and notes that Epilepsy Scotland have been vocal in their attempts to raise awareness for those living with his condition. However, he believes the stigma of disabilities is still there, and more information would help the public understand the complex nature of hidden disabilities.
“I just wish people could be more understanding of other people’s circumstances,” he says. “I understand people are not pleased if their bus is delayed because someone has taken ill – it’s not ideal in any case if the bus is stopped from travelling. But the buses are a public resource, so everyone should be able to access them, including folk with disabilities. More information would hopefully prevent people from being so judgemental.”
With people only being able to use buses for essential travel during certain periods of the pandemic, Dave believes many have been put off from going to essential appointments, for fear of not being received properly by their fellow bus users.
“I’ve had to cancel some appointments during lockdown, mainly because I’ve been put off by the reactions I’ve had in the past,” he recalls. “The biggest hurdles against using the bus are these reactions, absolutely.”
Lothian’s drivers undergo disability awareness as part of their training in the company’s in-house training school, but Dave has suggested that more focus is needed on epilepsy in particular. He commented: “I think that by training drivers to be more aware of epilepsy and seizures, they may be able to reassure other customers whenever one happens.”
Dave does have a lot of praise for Lothian’s accessibility performance in general, recalling one instance where he fell ill while on board a Service 33. “It was many years ago, just leaving Gorgie Road,” he says. “I took a full-on tonic-clonic seizure… It was a pretty violent one.”
The driver was quick to pull the bus over, reassure the other customers, and promptly seek medical help for Dave having recognised that he was in trouble.
“I didn’t come out of the seizure at all, so I was in desperate need of help. The driver was fantastic, and even followed up with my partner afterwards to make sure I was ok and that there had been a positive outcome.
“Although it was scary at the time, I’ll always remember the kindness of the driver.”
Our thanks go to Dave for sharing his experiences with us.
Lothian remains committed to providing an efficient, world class bus service for the people of Edinburgh and the Lothians. Within that commitment, we reiterate that our buses are accessible for everyone. We would like to remind customers that not all disabilities are visible, and for a variety of reasons some of our customers cannot wear a face mask during their essential journey. Please be kind and considerate while on our buses.
If you’d like to find out more about Epilepsy, please visit Epilepsy Scotland’s website.