A letter from the Collinson Family

Firstly, we would like to pass on our deepest thanks to all the brilliant people who have been integral to starting this great charity in Craig's name. And to all those who contributed and raised so much for the seat which sits proudly in Dartmouth Park in Morley, Leeds, where Craig would regularly take walks with his partner Rianna, and dog Ruby.

Craig was an amazingly kind, gentle, caring giant of a man. He made time for anyone, and not a single person had a bad word to say about him.

But even those words don’t fully capture the man he was. Craig had a way of making people feel safe, valued, and cared for. He was our real-life BFG — the Big Friendly Giant — and being around him just made life feel that little bit better.

He was funny and full of life, with a genuine love for people. He was passionate about health and fitness, not just for himself, but because he truly wanted to help others feel better in themselves too. He was determined to make a difference, always encouraging and supporting those around him. He also cared deeply about mental health, something he spoke about openly and with real understanding.

During lockdown, Craig put his heart into writing a book on health and nutrition — something he was incredibly proud of. It was simple, practical, and easy to follow, just like the way he supported people in real life. He went on to launch it and built a strong following, reaching and helping so many people, which meant a great deal to him.

Craig’s partner and family meant absolutely everything to him. He loved deeply, and that love was constant and unwavering. His mum and dad, and his brother, were such an important part of his life, and the bond he shared with them was something he truly treasured.

He loved the gym and took pride in being strong, both physically and mentally. That strength carried him through so much, and he held onto it even when life became incredibly difficult.

Towards the end of 2019, Craig began to experience symptoms that would go on to change his life. He was later diagnosed with a patulous eustachian tube in his left ear, which meant he could hear his own voice loudly inside his head, like a constant echo he couldn’t escape. He tried so hard to ignore the symptoms, but after several failed treatments, including having a grommet fitted into his ear to release pressure, filler injected into the ear, shims — you name it, he tried it — most of which often made his condition worse, the struggles, the torment, the torture were constant. Craig faced it all with determination. He tried everything he could — every treatment, every option — always hoping something might ease what he was going through. He kept going for as long as he possibly could. 

Craig did prove that it is possible to live with patulous with determination and support, as he did for several years, holding down work, gym, friends, and going on much-loved holidays with Rianna, his partner. Planning a family and looking forward to the future. At this stage, day-to-day he was coping. But his mental health was taking a beating. He was becoming more withdrawn, reducing his willingness to socialize. Often, his main outlet in life was the gym, but his symptoms were made worse when training, which he ultimately had to stop doing. This was something Craig found incredibly difficult to deal with. His only escape was making his condition worse.

However, despite this, Craig was a true warrior and was determined to get through it. He went on a family holiday to Tenerife in late 2023. He was fighting this, refusing to let it beat him, and Craig’s personality and smiling face had come back, showing his determination to fight the symptoms. Aside from him coming across as a little distracted at times, he seemed relatively okay, and we were overjoyed to see our old Craig.

However, it later emerged his distraction was due to his symptoms developing, except this time his previously perfect right ear had started with its own symptoms. He was now getting pulling sensations whenever he spoke, which he didn’t tell us at the time.

Shortly after we returned home, his mental health deteriorated significantly as the symptoms in his right ear got much worse. He could just about cope with the persistent symptoms in one ear, but now experiencing them in both ears, he found it impossible to cope. At this time, he stopped going to the gym, and in January 2024 went on sick leave from work.

As well as the pulling feeling, he was also getting significant pain whenever he spoke. This resulted in him refusing to speak to anyone to avoid the discomfort.

This was followed by patulous issues, clicking, popping, and pressure from the right ear, as well as the ongoing patulous in his left ear. The clicking was audible to people 6 feet away. Craig’s mental health deteriorated further. He withdrew from almost all of his social circles, keeping contact only with Rianna, his parents, and his brother. We arranged therapy for Craig, but it was too painful for him to talk through his struggles. With great support from his GP, Craig tried to fight the depression through strong medication and intensive pain management and acceptance therapy, but the symptoms were unrelenting.

Craig spoke to numerous specialists all around the world, ranging from ENT and pain specialists, to neurologists, from the UK, America, Spain, Portugal, Germany, and several others too. Despite lots of different treatments, including cutting nerves and tendons in his right ear, nobody could help with his issues. Several specialists described the symptoms in his right ear as baffling.

Craig continued to withdraw and would sit silently outside on his own, all day. This occurred every day for over a year. When Craig visited his family, he would either sit outside on a bench in the garden or lie on our sofa with his hat pulled over his eyes, doing his best to shut himself away from life around him. Then eventually, he would leave and go home.

Craig, being Craig, was always concerned about the effect that his awful state was having on those closest to him. As well as going through his physical problems, it brought him to an all-time low worrying about himself and those around him. It ranged from being upset (which I know he hid from us a lot) to fury and frustration. He fought incredibly hard to fight the symptoms and try to come to terms with it. It was the extreme issues in his right ear, plus the combination of the left-side patulous, that was impossible to ignore. It was nonstop, 24 hours a day. The symptoms even woke him while he was sleeping. The only way to calm the symptoms, even to a small degree, was to sit perfectly still and not move.

The combination of relentless pain, the constant noises, and the impossibility of finding a cure—or even a glimmer of hope—became too much for him. It was as if he was trapped in his own body. Seeing our formerly happy Craig endure such unending physical and mental anguish, knowing we could do so little to help, was heartbreaking. We had many conversations with him about how he felt. He was an incredibly strong person, but the endless popping and clicking noises were impossible to ignore, and the pain he felt when trying to talk made communication almost unbearable.

Through it all, Craig never stopped caring about the people he loved. His partner, dad, mum, and brother were by his side every step of the way — supporting him, standing by him.

What Craig and his family went through together is impossible to fully put into words. The strength it took, the love we shared, and the pain they all carried is something that will always be a part of Craig’s story. He was never alone in it.

We are left with a massive hole in our lives, but we do our best to accept that he now has the peace he was so desperate for. I hope sometime in the future a cure can be found so no one has to go through what Craig went through. Until then, please keep hope and keep battling. We send our love to all who have to live with ear issues.