THE POWER of positive thinking allowed an Edinburgh man with
Duchenne Muscular Dystrophy to find independence.
At only three years old Neil Robertson was diagnosed with
the disease – a genetic condition that caused his muscles to progressively
weaken and lose function.
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| Neil Robertson with his sister, Rachel, and mum, Lindsay. |
The ravages of the disease finally took their toll and he
died, age 30, on April 5, 2014.
His mother Lindsay Robertson, 60, explains how she has found
comfort in her son’s legacy: “Neil can help others even though he is no longer
with us.”
His early childhood she said was normal and he enjoyed
playing on his bike and kicking a ball around. But by the time Neil was eight
he was wheelchair-bound and later required a ventilation unit to breathe.
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| Neil, age five, photographed riding his bike. |
She recalled the signs that suggested something wasn’t quite
right: “I noticed when he was young that he wasn’t able to move as well as his
two friends who were the same age. They were all running about daft and
suddenly I saw he wasn’t keeping up with them. I took him to get checked out.
“It was shocking and a terrible thing for parents to live
with but I was determined to make sure his life was full.”
She feels that her experiences as a primary school teacher
already gave her a rounded approach to child development.
“In schools we try to develop a ‘go for it’ attitude.
Positivity is important to everyone but for someone with major challenges it
can be more difficult.
“Neil didn’t always have a positive attitude; he could moan
for Scotland. As he became older he did, with encouragement from those around
him, become more positive in his outlook.”
Lindsay separated from her husband, Gordon, when Neil was
eight and she brought up Neil, and his younger sister Rachel.
Lindsay and Neil’s dad came from sporty backgrounds and she
feels that her decision to encourage him in that direction was an important
one.
“I realised that Neil wouldn’t be able to participate in
sports. But, I made a conscious decision to get Neil involved at a spectator
level.
“Not taking part must have been frustrating for him but he
was passionate about football and got on with it in terms of his disability.”
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| Neil, age 10, photographed with Alex Ferguson (right). |
Though possibilities for children with disabilities to get
involved in sport are limited her approach worked well for Neil who became
‘sports mad’ and a life-long Celtic fan.
They attended Celtic Park for all domestic and European
games and Murrayfield for Six Nations rugby.
Lindsay added: “It’s so important to encourage the child to
be proactive in any way possible. It doesn’t have to be sport - it could be
collecting things or going to the theatre or live music events.”
Neil attended mainstream schools including Balerno High
then, at Telford College, he completed HNC’s in Tourism and Sport Coaching.
Lindsay paid a heavy price in terms of her own health
through his teenage years.
“Looking after Neil was pretty difficult because I didn’t
have any support for him. From age 15 he needed a high level of care, and a lot
of turning during the night.
“I didn’t get any sleep for about three years, I was a
zombie and my health suffered. It’s such a stressful thing to watch your child
fading like that.
“At that time his life expectancy was early to mid-20s and
the pressure was on me because we knew the future wasn’t looking great.”
In his late teens Neil could still lift his arms a little
and control his electric wheelchair but needed help with personal care.
“It was not easy. Any parent will tell you the same thing.
You wouldn’t believe some of the rubbish we had to deal with. After lots of
meetings where I more or less pleaded that I couldn’t cope on my own anymore.”
Lindsay fought long and hard for help to be provided and
eventually she made a breakthrough.
“Put it this way I was a quiet person, and became very
assertive because it was the only way to achieve anything.
“When Neil turned 18 he was awarded 24 hour care with a
social work package which was the best thing that ever happened.”
Lindsay was proud of Neil when he got his own flat on Lauriston
Place at age 24. She said he enjoyed taking care of his own household – bills,
decorating and having friends over, adding that it was a chance for him to be
in charge of his own destiny.
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| Neil celebrates with a drink with his younger sister Rachel. |
Lindsay helped with applications for Disability Living Allowance
and Housing Benefit to enable him to move into the flat. But stressed that the
system was ‘very wrong’ with regular re-applications, reviews and lengthy forms
to fill in.
Neil thrived in his new flat and although his physical
condition worsened his character grew. He was described as keen to learn, smart
and humorous. He loved socialising on nights out and carers who had helped him
through the years would join in the fun.
The flat had a central location meaning he could take
advantage of the city’s Fringe Festival shows, local pubs and cafes. The Odeon
and Cameo cinemas were regular haunts.
“When he got his independence he had very much a better
life. He went out to bars and enjoyed cocktails on a Friday night. Many’s the
night I’d get a drunken phone call.”
His favourite cocktail bar was Tigerlily’s where he
celebrated his last ever birthday when he turned 30.
In January 2014, a few months before his death Neil attended
a Burn’s Supper. There he met two 17 year olds with Muscular Dystrophy who were
in awe of his ability to function in his own flat. They determined there and
then to pursue this option in future.
Neil campaigned against bedroom tax after it came into
force. People with a spare room faced tax charges for extra bedrooms – even though
many disabled people required the extra room. Housing stock was not available
for people to move and so many people were driven into debt. He protested
outside Scottish Parliament for the policy to be scrapped.
Lindsay endorsed this campaign: “We were unable to find a
flat with two bedrooms. This was a pest when I needed to stay when he was
unwell.”
She also encouraged him to become a councillor, and said:
“He never quite got around to it but I think eventually that’s what he would
have done. I used to say: ‘you can’t use your muscles but you can use your
voice’.”
Neil’s interest in politics developed and as an active
member of the SNP. As a staunch believer in independence in Scotland and in
life he often visited his local branches to air his views.
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| Neil at a campaign for Scottish independence. |
Shortly before his death he wrote about his visions for the
future in his piece entitled ‘Our Scotland’ - where he expressed his wish for a
country where disabled people are seen as vital members of society.
It read: “Westminster, through the bedroom tax system, has
shown that it doesn’t care about the disabled.”
He signed off by writing: “Things won’t always be perfect.
Sometimes it will be winter but we will have our summer one day.”
In the end Neil’s life came to an end in hospital where he
was awaiting a new wheelchair. He stopped breathing in his sleep.
Lindsay said: “He died of Cardiomyopathy- his heart couldn’t
cope anymore and stopped working.”
She added: “The funeral was lovely, all Scottish themed with
pipers, and lots of people there.”
Neil was buried at the Woodlands Cemetery where Lindsay was
off to next to visit and plant some flowers.
Neil was able to live beyond his life expectancy with the
help of family and carers. But ultimately he was driven by his own
determination to take on the world.
His mum summed up: “He did it by keeping busy and positive.
He did have his down days. He was pretty brave, you have to be.”
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