Most of us would admit to finding some mornings a bit of a challenge, but for Jonathan Smith every day requires a massive struggle just to get up and get out.
On Monday (27 March), it will be 16 years since the fateful morning he woke up unable to walk or talk. He was 25 years old, an aspiring actor, working in the ticket office at Birmingham Rep. Rushed into hospital he was diagnosed with hydrocephalus, a massive build-up of fluid in the brain, and sent for emergency surgery.
It saved his life. Around 95 per cent of a malignant tumour was removed, but it left him partially sighted with a string of conditions – adrenal insufficiency, hyperthyroidism, hypopituitarism – and no growth hormone. It means his body is unable to regulate temperature properly and cannot control its responses to stress and anxiety – even the most ordinary nervousness can trigger an uncontrollable panic attack. He also has to be aware of potentially life-threatening adrenal crisis (he’s only had two) and suffers from chronic fatigue and every day must start taking medication at 6.30am just to be in work for 10am. His meds continue all day to maintain stability.
Regardless, Jonathan is laser-focussed on what he can do, rather than the things he is unable to do. He’ll happily explain why he carries a stick and is never far from a handheld, battery operated fan that keeps him cool, but he’d rather talk about acting, or the business of arts management and fund raising.
“My neuro oncologist told me recently he is amazed that I work full time,” says Jonathan. “But I think it’s quite common in young adults who have a brush with mortality to come out of it and really push themselves. It’s a second chance of life. I probably pushed myself a bit too hard at first – after a year in recovery I tried to work full time and started a Master’s degree. I’ve got a better balance now.”
Having worked casual shifts in the Ticket Office for the last 18 months, Jonathan was recently appointed to a new role at Lighthouse – Fundraising Executive (Individual Giving), working two days a week to grow our income from major gifts, appeals, memberships and legacies. The rest of the week he looks after social media communications for the Shine cancer support charity in Poole.
“I love my jobs; they are so important to me, and in this new role I enjoy thinking more strategically. Lighthouse has been so supportive in adapting to my needs so I have a hi-vis keyboard and zoom text software on my computer that will even speak to me if my eyes are too tired.
“The Access To Work scheme has been a real help, enabling me to work and contribute fully rather than being held back by the obstacles my body presents. In fact, it helps me make sense of everything if I distinguish between my body and my mind – sometimes my body prevents me coming into work and I’m incapacitated by nerves and fatigue.”
From childhood, Jonathan had aspired to an actor’s life. Encouraged by his close friend, Doctor Who actor Arthur Darvill, he joined drama groups in Birmingham where he grew up and enrolled in Manchester School of Theatre where he was steeped in the physical theatre of Song of the Goat company.
“Basically, I spent three years with no shoes on!” he laughs. “I loved it, but it was there that I first noticed my health wasn’t what it should be. I was always thirsty even though I drank litres of water. It got progressively worse and by 2006 when I was working at Birmingham Rep I was diagnosed with Diabetes Insipidus, which means I’m unable to control water retention. I had a brain scan that showed a small lesion on my optic nerve, which ultimately resulted in the tumour.”
Jonathan’s recovery is on-going, as is his quest for personal development. From Birmingham, he moved to London to work at Digital Theatre, producing plays for schools to stream, and completed his Master’s in Hospitality and Tourism Management.
“It was there that I spotted Lighthouse and actually applied for three jobs here before I was accepted as a casual in Ticket Office. When I joined we were still coping with Covid restrictions and a lot of shows were being rescheduled. I’d never seen a team cope so well under that much pressure, but I felt at home straight away. It demonstrated to me the importance of community, of not being alone; the sense of belonging is very strong at Lighthouse.
“And that’s hugely important to my sense of self.”