| Personal Stories | | | | Norin's Story | | | On May 27th, 2008 the McGarvey family’s life changed forever. Sonia and her two children, Noirin (4 years old) and Aodan (2 years old) were driving to their grandmother’s house when a car veered across the road and hit them head on, causing a devastating collision.
"The car was on fire and the side of the car where Noirin was sitting had suffered the worst impact from the crash. Thankfully, the two children had been well secured in the correct child car seats or the outcome could have been worse,” said Sonia.
An ambulance arrived to the scene and both Sonia and Noirin were admitted to the intensive care unit at Letterkenny General Hospital. Later Noirin was transferred to The Royal Victoria Hospital in Belfast. Aodan, fortunately, suffered just a few minor cuts and bruises and was swiftly released from the paediatric ward into his grandmother's arms.
Doctors soon discovered that Noirin had a T1 complete spinal injury. “The surgeon told us that Noirin’s spine was completely severed. She is paralysed from the chest down but thankfully she has great use of her hands.”
Sonia spent two weeks in Letterkenny Hospital following the accident and during this time the responsibility fell on her husband to break the news of the extent of the injury to Noirin. The hospital provided him with a child psychologist who was instrumental in guiding the way through the process.
“Noirin may have been just four but she fully understood what she was being told. She cried out and asked a lot of questions. She had just started ballet classes and she was fully aware that ballet would no longer be an option for her.”
Noirin spent two months in the Royal Victoria hospital and then transferred to Stoke Mandeville Hospital in Aylesbury, Buckinghamshire where she spent two months being rehabilitated. The McGarveys found the hospital a vital point of contact where they received invaluable advice on Noirin’s condition. When the family returned home they were visited by a counsellor for families with special needs children who helped them fill out a never ending list of essential forms.
Sonia says: “I’m an occupational therapist with some experience in this field but I still found the whole processincredibly overwhelming. Apart from Noirin and us having to come to terms with her paralysis, there was a huge amount of red tape and changes to be made. We had to make adaptations to our house to make it wheelchair friendly and we also had to contact the school where she was due to start and it also had to make changes. The principal and staff were very supportive and the necessary adaptations were made there also.”
The local community carried out two rounds of fund raising and the money garnered from the process has helped the family pay for building works and other expenses associated with Noirin’s condition.
“Apart from basic adaptations such as resurfacing the ground around our house and a through-floor lift we also built a car port so she could go from the car to the house without getting wet. We installed agym and a hydro-pool which has jets that she swims against. She uses this once a week because she is very susceptible to urinary tract infections when she uses a public pool.”
The McGarveys were delighted when Noirin reached her goal of joining junior infants just weeks after leaving Stoke Mandeville. “Thankfully she had spent the previous two years at the Naionra belonging to the school so she had a firm group of friends established already in the class. They rallied around her so much and still do today. In fact, Noirin has, on occasion, told me that she wishes they would treat her just like one of the gang instead of fussing over her so much. She just wants to blend in. However, it’s not a bad complaint. Her
friends have been wonderful,” Sonia says.
The local ballet teacher, who is the mother of one of Norin’s friends, encouraged her to return to ballet class after she left Stoke Mandeville. Noirin joined the class in her wheelchair and was taught how to use her arms and move them to the music. Noirin remained in the class until recently. “She didn’t give it up because of her paralysis; she just lost interest in it.”
Noirin’s greatest passion is horse riding. She rides once a week, often on the beach. She
recently learned how to trot and has progressed from needing two people to support her to just one person who stays close by but doesn’t actually hold her. When she first began, a special saddle was made for her but now she rides bare back and holds onto a strap that crosses around the horse’s torso.
After developing some unusual symptoms, such as pins and needles in her hands, Noirin was brought to Stoke Mandeville with queried Syringomyelia, a cyst that forms in the spinal cord.
Sonia and her husband decided to get a second opinion from Shriners Children’s Hospital in Philadelphia which specialises in spinal cord injuries. The doctors at Shriners discovered her symptoms were related to her original injury and were able to treat the problem within a week.
They also noticed that she had scoliosis (curvature of the spine) and they made a back brace so as to delay further progression. "The treatment we received at Shriners was invaluable and we are returning there at Easter.
We also recently travelled to a clinic in Baltimore for restorative therapy where they recommended the Functional Electrical Stimulation (FES) bike. The bike helps to maintain muscle bulk and reduce spasm. Although it didn’t make a massive difference to her, we learned what the best therapy is for her and received a very good home program.”
"We bought a Functional Electrical Stimulation bike which we try to use twice a
week. Like any child, there are times where she just wants to stop and do normal things.”
Aodan is now five years old and resents the time his mother and sister spend away from the
home when they are travelling abroad. “I’m very conscious of his needs and I try to limit the amount of time spent away from the family home. I don’t want to treat him unfairly.”
The family was given access to a child psychologist after returning from the hospital but never felt the need to call on his services until recently. Last Christmas, Noirin broke her leg and developed pneumonia. “She has her moments when she feels that life has been unfair to her. There’s usually a trigger, like an illness, and then she asks the necessary questions
before moving on. However, this time around the low moments went on for a little longer, so she has started seeing the child psychologist and enjoys the sessions which largely revolve around play.”
Noirin has recently started Spanish classes, takes keyboard classes (where she proudly got full marks in her first exam)and loves art. Sonia feels it is worth stressing that
parents are also put in the role of being care co-ordinators, nurses and therapists and it leaves very little time to be just mammy or daddy. If services were more streamlined with the necessary professions and investigations all under one roof, with a co-ordinator of care and regular review instead of crisis care, things would be a lot easier.
Sonia is now working hard to promote awareness and raise funds for umbilical stem cell research, particularly the work done by Dr Wise Young, who has driven the field of spinal cord injury (SCI) restorative research for the past two decades. “SCI Network USA is raising funds for stem cell research through its organisation www.justadollarplease.org.”
| | | | Top of Page | | | | Tom's Story | | | Tom Chambers is a man who is well able to look after himself but he is much more interested in looking out for others. Following a car accident in 1981 that left him paralysed from the waist down, the straight-talking Co Mayo man has become a very vocal campaigner for the rights of disabled people.
“I don’t worry about myself. I have a carer for 20 hours a week and she always comes in with a smile on her face – you can’t buy that,” he says. “I’m independent – I like to do as much as I can.”
Born in 1945 near Newport, Co Mayo, into a family of 16, Tom left national school with only a basic education. He became very involved in the local GAA but like many a man of his generation in rural Ireland, he took the boat to England in the early 60s, finding work on the building sites of London.
He worked long, hard hours “doing whatever paid well” including tunnelling and carpentry on the new M25 motorway. It wasn’t all work and no play, he enjoyed the dances and the pubs – he was a man who always has, and still does, love the craic.
He returned to Ireland after almost 20 years, when the country was enjoying a mini-economic revival. He had no way of knowing his life would change so suddenly and permanently after a night out with friends from London in a hotel north of Dublin.
“It was around half-three on Sunday morning in March, 1981. I was getting near Drogheda. A girl we all knew in London who was working at the hotel asked me to stay – she told me I looked tired and I had had a few pints. Typical Irishman, never listens. I was tired and I remember telling myself ‘pull up, pull up’ for a sleep when ‘bang’. I don’t remember much but it turned out I had crashed through a big stone wall. It fell on top of the car, so nobody even knew I was there. It was four-and-a-half hours before they found me. I’m only glad there was nobody else involved.”
After a few hours in intensive care at Our Lady of Lourdes Hospital in Drogheda, Tom was airlifted to the National Rehabilitation Hospital in Dun Laoghaire, where he would remain until the end of that year. It took a while to dawn on him how much the accident had changed his life.
“I told the nurses I needed to be out by Monday because there was concrete coming to the job,” he recalls. “It took me a long time to sink in that I wouldn’t walk again – nobody ever told me directly, I was given some literature but I didn’t even know what a spinal cord was for; they never teach you that at national school.”
Yet, even from the outset, there was never any self-pity. He remembers a young Cork dentistry student in the same ward who had suffered a horrific accident while playing rugby.
“They say there is always somebody worse off than yourself and I saw it there first-hand – a lad with his whole life before him and this happens,” he says.
Although unmarried, Tom had more than himself to think about - he was in a serious relationship at the time.
“I was living with a girl and we were engaged but it is different when you have to live in the community and there wasn’t much support so I felt it just wasn’t fair on her,” he says. “I had to make a decision so I told her to ‘find a right man’.”
In December 1981, Tom returned to his native Newport, where he moved back in with his parents. In 1986, after many years of being a constant thorn in the side of Mayo County Council, he was allocated a house in the town, where he could begin living independently once more.
He has since moved to a small bungalow just outside the town but it would appear he spends most of his time there updating his website and lobbying councillors on various access issues.
He emails county and town councillors regularly but rarely receives a reply from most of them. Like water on a stone, he is determined to ground them down.
“I’ll keep at them. Over the years I learned you have to keep at it and there’s no sense losing the head.”
While there have been some improvements over the years in terms of access awareness, there are deficiencies in even these facilities. He is particularly disdainful of lack of width when it comes to designated parking bays for people with wheelchair access, pointing out these should be wider than standard bays to account for a wheelchair being placed beside a vehicle.
Tom is a whirlwind of activity and his knowledge on mobility issues is in constant demand by county planners, Knock Airport and community groups.
Lack of mobility has never extinguished his natural athleticism and he has finished several Dublin City marathons. Now, even as he approaches his 65th birthday, he doesn’t find it odd that for the past three years he has been making the seven-hour round trip in his specially adapted car to Dun Laoghaire to attend a self-defence course.
“I’ve been floored before and they tried to take my wallet,” he recalls. “Many disabled people are mugged every day, so this interested me.”
Tom is certainly no soft touch – and it sounds like he would be more than capable of handling himself. He waxes lyrical about the many ways to fend off a would-be attacker and has particular relish for the martial qualities of the humble pencil when used as a defensive weapon.
Although his car is his prize possession, he loves to travel regardless of the mode of transport. In a few weeks’ time, he will be heading off to his nephew’s wedding in Poland and in September he will be in Strasbourg for the annual Freedom Drive, when people with disabilities from various countries meet to lobby the European parliament.
“We call ourselves Freedom Fighters but we are fighting for our rights,” he says. “I’ll be there in my Mayo jersey singing all the way to the parliament ... We always end with the Martin Luther King anthem ‘We Will Overcome’ – and we will.”
Like any of us, Tom knows hindsight is a wonderful thing. While facilities have improved somewhat in the 30 years since his accident, there is no shortage of work still to be done. He is especially passionate about the rights of people to live as independently as possible in the community “rather than being thrown into institutions”.
However, he believes his main contribution could yet be his experience in dealing with the life-changing nature of sudden disability.
“When I left Dun Laoghaire, I thought I was going into a different world – you’re always worrying if you can do this or that,” he recalls. “There are things you don’t bother about in a hospital like ‘can I get on a plane? I have conquered those fears now but peer consultation would have been better and that is something I would really like to get involved with.
“There is a whole range of activities open to people nowadays – scuba diving, fishing, surfing and so on – you don’t need to be glued to a computer all the time. There are loads more options out there if you have the right attitude. I’m not saying it isn’t hard and you won’t get down sometimes but life is still worth living.”
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