TWIMUKYE Mushaka is a survivor.
“I’ve never let disability be an obstacle in my way,” she says. “I was diagnosed with multiple long-term conditions, including severe depression, many years ago, while I was the lone carer of four young children.
“I tell myself to keep going, whatever the problem is.”
Twimukye, a former Evening Times Community Champions awardwinner tells her remarkable story in a new book dedicated to those living with illness, disability or caring responsibilities.
Humans of Scotland is the result of a storytelling project by the Health and Social Care Alliance, which invited people to come forward to share their experiences.
Featuring Scotland rugby international Doddie Weir, who speaks candidly about living with Motor Neurone Disease (MND), and a foreword from First Minister Nicola Sturgeon, the book reveals what it means to live challenges such as mental illness, addiction and sight loss.
There are around 2.2 million people in Scotland living with one or more long term conditions. Thirty two percent of adults have a long-term limiting mental or physical health condition or disability and there are an estimated 788,000 people in Scotland who are caring for a relative, friend or neighbour.
Twimukye, who lives in the north west of Glasgow, was born deaf with a severe speech impairment.
“This improved when I got my first hearing aid at University and it enabled me to distinguish words and sound,” she explains.
“In 2012, I was diagnosed with diabetes and retinitis pigmentosa, which affects both hearing and sight. It means I will never be able to drive or navigate unfamiliar places in the dark without help.”
Nevertheless, with support from her employer, friends and family, Twimukye continues to work – she is a fieldwork development worker for the Poverty Alliance – and support her community.
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“I have always gone that extra mile to make sure my disabilities are not a barrier to what I want to achieve as a professional, an employee, as a mother and as a human being,” she says.
“Surviving and living with long term conditions is challenging, don’t let anybody tell you it is easy.
“My children have in many ways inspired me to live this fight, It’s all about keeping hope alive.”
Michael Byrne survived the Clutha Bar helicopter crash in 2013. In the book, which is available free in all libraries across Scotland, he explains his fight to overcome complex Post-Traumatic Stress Disorder.
“It was lonely and extremely painful,” explains the 50-year-old from Stepps. “I went off the rails and sabotaged everything around me. Those four to five months were my darkest days.
“The first time I went to a support group I was in tears the whole time. Now I write poetry, I go to support groups, they are absolutely my medicine.”
He believes his toddler son gave him a reason to go on.
“I love waking up my son in the morning,” he says. “It’s the most beautiful moment of the day, just lifting him up and giving him a kiss. He’s a beautiful boy.”
Imran Akhtar was a post office manager when one day, he lost the sight in one eye.
“No warning, no pain – nothing,” explains the 41-year-old from Anniesland.
“I finished my shift and thought it might get better. The next day I went to the hospital and they said my retina had detached. They don’t know why it happened to this day.
“I was going in for my third operation and I noticed a little speck in my other eye. The other retina had detached as well. I asked when I could get back to driving and they told me it was never going to happen.
“In the waiting room I just started crying. I went home and stayed in bed for two weeks.”
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With support from family and the RNIB, Imran picked up the pieces and now supports other people with sight loss through his job with Access to Work.
“I feel like I’ve come full circle,” he says. “It sounds weird to say, but losing my sight was one of the most positive experiences because now I’m helping people in a real way. Before that I was just plodding along.”
Professor Ian Welsh, chief executive of the Health and Social Care Alliance Scotland, says the book is a powerful look at the lives of those whose stories need to be heard.
“Living with a long-term health condition, disability or as an unpaid carer presents challenges that often must be overcome time and time again,” he explains. “It is important to us to highlight these issues as an organisation that champions the voice of people with these experiences. In sharing their stories, the contributors to Humans of Scotland have played a vital part in growing our understanding of what it means to face and cope with adversity.”
In her foreword, Nicola Sturgeon says: “In reading this collection, I was touched by the candid nature of the different pieces. By sharing their innermost thoughts and feelings, each contributor has demonstrated a huge amount of bravery – as well as great generosity. They have given us a valuable insight into lives and experiences we might never know.”
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