Zak Begum loves spending time with her friends at Walsall’s Fair Oaks Day Hospice – but has her eyes on a bigger name with plans to see Ed Sheeran next year.
The 30-year-old, who lives in Palfrey, has been attending the centre every Friday for over four years as welcome respite from the conditions she lives with.
Zak was born with congenital muscular dystrophy, a muscle wasting condition, and also has scoliosis – curvature of the spine – epilepsy, respiratory failure and asthma.
Breathing difficulties mean Zak is placed on a ventilator every night and uses a machine called cough assist which brings up secretions.
She lives with her mum Khalida, 74, but the severity of her conditions means she requires round-the-clock care.
Zak’s ‘C’ shaped spine causes her to lean to the right and is getting tighter as she gets older; she takes painkillers four times a day and will require a new wheelchair soon.
Her deteriorating muscular condition means she is no longer able to write, feed herself and sit up straight. Zak also suffers seizures once or twice a month due to her epilepsy.
Despite her daily challenges, Zak has a zest for life that leaves others with less limiting conditions trailing in her wake.
Hugely popular at Fair Oaks, she gets on with staff and patients alike, joining in with the quizzes and arts and crafts patients are encouraged to get involved with.
“I feel like I’ve got a better quality of life and real purpose to life since I’ve been coming here,” said Zak, who is the youngest of six siblings.
“This place means a lot to me – I don’t know what I would do without it. It’s good for my mental health.”
It’s the support that loved ones can’t provide which many patients rely on at Fair Oaks.
Many patients have come to terms with knowing they have a life-limiting condition and their end-of-life plans, but not with what happens ‘in the middle’, ie from now on.
“I don’t think too much about what will happen to me, such as when it’s my time,” said Zak. “I can’t talk about that to anyone else but I can talk to the nurses here and I have bereavement counselling,”
Like many patients, Zak also takes advantage of the complementary therapy available at Fair Oaks and enjoys massages to ease her back pain.
Part of her willingness to live as full a life as possible is fuelled by the losses of brother Khalid at 49 from Covid-19 and father Mirza Khan in his early 80s – both this year – as well as two 21-year-old nieces, who both also had congenital muscular dystrophy.
After being educated in special schools in Walsall and Birmingham, Zak spent four years at Walsall College, studying maths, business administration and performing arts.
She got through her studies by being tested orally, as her muscular condition means she is unable to write as she has very limited use of her hands.
Zak dreams of becoming an events planner, but she has a real passion for the arts. A film lover, she would love to play a villain, while she makes resin-based art and posters which she hopes to sell on online platform for homemade goods Etsy and has aspirations to enrol on a graphic design course.
All of which brings us back to Ed Sheeran, who Zak reveals is just four days older than her! “I love arts and crafts – today I made a flower with tissue paper and card; I wish it was a heart so I could keep it and show Ed Sheeran when I see him in concert in Manchester next year!” she added.
“My dad always told me to look on the bright side of life. What has happened to my dad and my brother has taught me that life is too short.
“I haven’t been told how long I’ve got to live. I believe if someone tells you you’ve got a life-limiting condition, it doesn’t mean you’re going to die before someone who hasn’t got a life-limiting condition.”
Zak has shared her story as part of #HospiceCareWeek which runs until 8 October.