Kay

When Kay made the decision to become a full time carer for her mum she had two concerns, “I was concerned about money and I was concerned whether I could do it without shouting at her”. But actually neither of these things have been the issue. Kay finds the hardest thing to deal with when looking after her mum, is not knowing what simple aspect of daily life her mum has forgotten how to do. “I don’t know if she’s forgotten how to wash up. I don’t know if she’s forgotten to put her knickers on”. It was just before Christmas when Kay realised that her mum had forgotten what the dishwasher was for. “She thought it was just a big cupboard. When my brother came around and put all his dirty dishes in (the dishwasher), she was taking them out, washing them and then cleaning the ‘cupboard’”.

Kay’s mum has Vascular Dementia, which is a condition where blood vessels in the brain thin, causing bleeding. Which aspect of the brain stops working depends on where these bleeds are. “There is no natural progression, so my mum has particular problems with her speech, but that’s just where it is at the moment.” Kay says it’s not like other forms of dementia where you can see the person deteriorating as the disease gets hold. “The prognosis is that she will either die of a heart attack or a massive stroke. It’s a bit of a ticking time bomb”.

“It’s so easy to take someone’s independence away from them.”

When Kay’s mum was diagnosed the doctor told her she wouldn’t be able to drive anymore, the first step down a slippery slope to losing her independence. Her mum could still walk to the shop to buy a few groceries, but if she needed to buy some heavier items or go further afield, she needed someone to take her. “It’s so easy to take someone’s independence away from them,” says Kay. She didn’t want her mum to miss out on going out and having the interaction she enjoys, “you’re crushing their independence even more and narrowing their horizons,” so she takes her mum out most days, whether it is shopping, to the garden centre or out to a cafe.

Kay finds it’s a thin line between realising there are some things her mum is unable to do and taking over every aspect of her mum’s life. She gives an example of her mum’s tablets. Her mum takes four tablets a day, which are in a box labelled for each day. Kay found out her mum was forgetting what day it was. She would think it was a Friday and thought she had forgotten to take Wednesday’s and Thursday’s tablets so would throw them away. In fact is was a Wednesday and she had just thrown two days of tablets away. Kay still wanted her mum to have the responsibility of taking her own tablets, but she needed to make sure her mum was actually taking them correctly. She found if she visited her mum every morning and gave her the box of tablets just for that day, her mum would then be quite capable of taking all her tablets throughout the day.

Kay struggles with balancing her own family life with her mum’s needs.

I think internally Kay struggles with balancing her own family life with her mum’s needs. Kay tries to keep Sunday as a day just for her, her husband and her 11 year old daughter. “I am quite precious about our Sundays now…we do try and do something with just the three of us.” Holidays have to be carefully planned so her mum can be looked after. Someone needs to be around in the morning to give her mum the right tablets for the day and then either at night or at lunch to give her a decent meal. Her mum is then able to make herself a cheese sandwich for the other meal. Kay, her husband and her daughter plan to go away over the Easter holidays for six days, but it seems the real challenge is when they want to go on a longer summer holiday. “We’re due to go on a holiday in the summer for 2 1/2 weeks and I don’t really know what’s going to happen,” says Kay as she trails off. It is something that is visibly playing on her mind.

I ask Kay if her mum has gone through any personality change, as some people with dementia do experience behavioural changes. This hasn’t happened and Kay paints a very lovely picture of her mum when she says, “she’s always been kind and placid and thoughtful and understanding.” Listening to Kay’s story I feel these are traits that her mum has passed on to her.

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Karen Joanne – Laughter yoga and First Dates

Without her prior knowledge, Karen Joanne’s best friend put her forward for the TV show “First Dates”. She thinks Karen Joanne has been single for far too long. She thinks this is the solution. Karen Joanne seems horrified at the prospect, but I wonder if secretly she thinks it might be quite fun. Don’t get me wrong, not fun as a match making exercise, as I can’t see she would enjoy the prospect of two million people watching her on a blind date. But fun because I think she would end up in an absurd situation, trying to get her stern date to loosen up by teaching him some of her laughter yoga.

“It was like being a battery hen.”

Karen Joanne used to work eight hours a day in a call centre, sitting down all day at a desk answering phone calls. It was hard to leave her desk, as it would show up in her manager’s office that she had logged out from the phone system. This was not looked on kindly by her manager. “It was like being a battery hen,” Karen Joanne states indignantly. One day at work, a colleague remarked to Karen Joanne that she was at her most animated when she spoke about her Thai boxing training and had she considered working in the fitness industry. “Honesty, it was like a light bulb moment. I literally went YES!” So over the next few months she enrolled in fitness industry intense courses to gain some qualifications, ditched her call centre job, moved out of London and started on her fitness career. “I didn’t care I’d taken such a big pay drop, I absolutely loved it, helping people to move”. That was twenty years ago, and thankfully she hasn’t sat down at a desk for that long ever again.

Karen Joanne’s teaching style in all her various exercise classes around Dacorum, is very much about having fun. “In classes you have to give a lot of instructions, so if you were to give instructions in the wrong tone of voice, people will just feel like they are being told off… As soon as I get in the class I’m like ‘ooh, you’ve got a lazy bottom today,’” she giggles. I wholeheartedly agree as I remember going to a yoga class and feeling like I was at school again. I never went back.

It is infectious and so this in turn makes me giggle.

Taking in mind Karen Joanne’s style, it is quite fitting that one of the classes she runs is laughter yoga. She says that in the class you don’t need to tell jokes or try to be funny, so if you were thinking about a career in stand up and thought this may be the class for you to try out your material, think again. She shows me the greeting game she does at her laughter class. She grabs my hand and shakes it and just starts giggling. Although I know this is fake laughing, it is infectious and so this in turn makes me giggle, until we are both genuinely giggling away. And as Karen Joanne says, the body doesn’t know the difference between the first initial fake laughter and genuine laughter, so you still gain all the health benefits. “If you laugh you lower your stress hormones, your cortisol drops, you get endorphins, you breath better and it feels good”.

But Karen Joanne is very well placed to know not to fake her own happiness. Ten years ago she left her last boyfriend because, in her words, “he wasn’t very nice, so that was good to leave”. And in those ten years she has spent a lot of time, “just being who I want to be, buying my house, deciding what I wanted from my business.” But she doesn’t come across as being cynical about relationships either. She tells me about the wonderful relationship her brother and his wife have. “They give me faith that I might actually meet someone who is perfect for me. They make my heart sing, they are so lovely together”.

I would still love to see her on First Dates, although I admit that it is from a purely selfish point of view. I can see her in the toilets at First Dates, giggling down the phone to her best friend at how mismatched her date is and hatching an escape plan. I think I would just laugh and laugh, and it certainly wouldn’t be fake laughter.

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Rebecca – Sport for All

Rebecca is a plodder. “I’m happy plodding,” she laughs. I immediately warm to her as I too am a plodder. We are talking running and I tell her I have long got over the embarrassment of my 10 year old son beating me at Park Run every week. Rebecca has run a few marathons; London, Chicago and New York, but to her it’s not about the time. “It’s a challenge, it’s a target and it’s that overwhelming achievement at the end”. Saying that, competitiveness, or maybe it’s pride, does still play a role in her marathon running, which she tries to do in just under five hours. When she ran the London Marathon she was pleased to be on track, and indeed finished in 4 hours 57 minutes. But it didn’t come without a moral dilemma in the race. Towards the end, she saw someone she knew. “I was going to stop and talk to this lady I recognised, who was struggling…I looked at my watch and I just thought I can’t. And even if I see her now, I feel guilty…She probably just needed a little ‘come on’ but I had twenty minutes to go – that’s awful isn’t it!” 

Her plodding running style is in sharp contrast to everything else she does. When I interview her she bounds in to the room and talks at a million miles an hour. Maybe her running is her way of slowing down. Recently she came home looking exhausted and her husband asked how a particular meeting had gone. “I just went blah blah blah blah blah…I just unloaded for 40 minutes”. But she has good reason to rant.

“I am really lucky to do the job I do. I really love it”.

Rebecca works at Sportspace. She has worked there for 34 years. “I am really lucky to do the job I do. I really love it”. She started as a teenager in an admin post and is now the Operations Director. She has always loved sport; team sports when she was younger and now running is her passion. The thing that really drives her, and her eyes light up when she talks about it, is how to get as many different people as possible, from all walks of life, more active. “It’s about more people, having more opportunities, in whatever way and whatever form works for them”. The way her and her team have done this is by appealing to the things people enjoy, not by forcing everyone to the gym. The XC Centre is a great example of this. By bringing together a skatepark, caves and a climbing wall, Rebecca and her team have encouraged a younger crowd who probably don’t think of themselves as sporty in the traditional school team sport way, to get active.

Just before Christmas it emerged that council had made a decision that Sportspace should to be taken over by a national profit-led company, ceasing the partnership they had with the local not-for-profit they had set up to run it since 2004. Rebecca and her colleagues were very emotional. They didn’t know what would this would mean in terms of their jobs and, importantly for Rebecca, what it would mean in terms of the philosophy to encourage sport for all, not just to those who could afford it. Under a company that is ploughing money back to shareholders rather than the community, what would happen in the future to people, like the elderly lady who told Rebecca, ‘this place saved my life’. One night at home she was completely overwhelmed by the whole situation, but didn’t want to talk to anyone. She just thought she would burst in to tears. But she tells how her 25 year old son was unusually tender. He said, “Mum I totally understand, you’ve been there before you had me, before you and dad. I totally understand where you are coming from”.

“It was an angry run”

There is one time when Rebecca hasn’t been a plodder. When she was furious about the situation with council, she went on a run to let off steam. “It was an angry run…and I vividly remember it”. Her sister, who often runs with her, saw her run on Garmin (an app that shares your running speed and other data). “I got a text later (from my sister) to say ‘what on earth made you run at that speed?’”. Rebecca giggles. “I don’t think I could ever do that speed again!” Maybe I need to get angrier to help with my running speed, and to be honest, reading all the details about council and how they have treated Sportspace, believe me I am. Depending on which way the council meeting goes on Wednesday, I may yet beat my 10 year old son at Park Run on Saturday.

You too can get behind the Sportspace staff and community by signing the online petition here.

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Michelle – Christmas Light Queen

Michelle and Ian have been displaying their Christmas light extravaganza outside their house for four or five years. “We started nowhere near on this scale.. it’s just got bigger and bigger!” says Michelle. Over that time they have raised around £2.5k – £3k for Rennie Grove. It takes around two months to prepare the lights and decorations. Ian then has to take a full week off work to put everything up. Michelle is quite relaxed about strangers walking around the front garden, looking at the display. She tells people to, “please come down the path and don’t be afraid!” Last year the ITV news weatherman, Martin Stew, presented the weather report from outside the house. “Suddenly all our neighbours wanted to come out!” giggles Michelle.

“When you’re told you’ve got cancer it’s the worst thing you want to hear”.

But the fundraising side of their Christmas lights is more than festive spirit. Michelle never forgot the support and advice that the charity Rennie Grove gave her when she was diagnosed with aggressive Stage 3 breast cancer in 2011. Her youngest son was six months. The doctor initially thought the lump in her breast was mastitis, common in breast feeding mothers, so the diagnosis came as a massive shock to her and her family. “When you’re told you’ve got cancer it’s the worst thing you want to hear,” says Michelle. She had to have a mastectomy, the lymph nodes in her armpits removed and multiple rounds of chemotherapy. “Just coping with having one breast and no hair at one point, I think that was the lowest I felt”.

Michelle and Ian didn’t want to hide anything about Michelle’s cancer from their two children. They also wanted their children to be familiar with how Michelle would now look. To a point the children were involved in that process. When Michelle started to lose her hair after her first round of chemo, Ian, helped by their eldest son, shaved off the remainder of Michelle’s hair. The children became use to her shaven head as she didn’t like to wear a wig. She found them itchy and hot. The children were also familiar with the scars of her surgery from her mastectomy.

“They know lots of people get better and lots of people don’t”.

Today Michelle is still on medication and will be for another three years. Her immune system isn’t as good as it should be and she picks up colds and flu more easily. The concern that the cancer will come back is always at the back of her mind. “You do always worry. It potentially could always be there, but you try not to think about it.”  Her children are very pragmatic about it, as children tend to be. They see that, “Mummy is better now”. When the children see something on the television, like Children in Need, highlighting children who have lost a parent to cancer, Michelle says, “they know lots of people get better and lots of people don’t”.

Michelle and Ian’s Christmas light show is an amazing sight. I am not sure how to even start to describe it. And it is so much more than the 100 or so light decorations. On the drive there is a Santa’s sleigh that you can sit in. There is a large Christmas lego scene displayed in the front of the garage. There are snowmen, angels, grazing reindeer, a train, penguins, three wise men and elves, all dotted around the front garden. There is Santa in his sleigh with Rudolph in front, perched on the roof of the garage. There is a polystyrene nativity scene on one side, which Ian’s dad built. There is a Christmas fun fair scene set up in the front window of the house. There are lights on the sloping roof and even Christmas music playing as you walk around. Ian has put together a quiz for the younger visitors, with a red post box to post your entry in for the chance to win a prize. Even the tree on the public pathway outside the house didn’t get away from the Christmas make-over, with a string of lights wrapped around its trunk. This description doesn’t do it justice so just go and see Michelle’ and Ian’s house on Blair Close for yourself.

“It is like a street party and we all love it”.

Like all good Christmas light displays, Michelle and Ian have an official switch on of the lights and invite all their friends, family and neighbours. This year the neighbours opposite organised mulled wine and mince pies on their driveway and Michelle organised a raffle and two tombola’s, with local businesses chipping in with prizes. One of the other neighbours was the MC for the evening – DJ Nick. Father Christmas even made a guest appearance. “It is like a street party and we all love it…It makes us feel quite blessed that people think of it like that.” The friends and neighbours all know the reason behind the fundraiser and, as Michelle says,”they know what we have been through”. To me, the coming together of Michelle and Ian’s friends and neighbours to light up this dark winter night parallels the community support that embraced Michelle and her family during one of their darkest times.

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Zane – Olympian basketball player

“The Olympics is still like a dream. It was amazing. You would be walking in the campus and you would see all these superstars from all over the world.” Zane is a 6’6’’ Latvian professional basketball player, and she is the last person I would have expected to find living at Amaravati Buddhist monastery in Great Gaddesden. She played for the Latvian national basketball team and represented them at the Beijing Olympics in 2008. At high school she had won a scholarship to play basketball in the US and was drafted in to the WNBA (Women’s National Basketball Association) after university. She married a professional basketball player in the States; “he was tall, he was good looking”. They were the envy of many, this perfect couple travelling the world, being paid well, driving expensive cars and following their passion. She was ticking off the list of her ten wildest dreams she thought would bring her the happiness she craved.

Zane felt her world had broken down

Zane’s early life was very different from this life as a globe trotting basketball star. She grew up in a suppressed environment in Latvia. For the first nine years of her life the country was part of the Soviet Union. Her family struggled with money and their attitude was that life wasn’t to be enjoyed, you just had to get through it. Her parents worked, but sometimes they didn’t even receive money, instead they were issued with ration tickets for food. The family grew extra vegetables in the summer and tulips in the winter, to supplement their income. Zane had a very difficult relationship with her father, who emotionally and sometimes physically, abused her, and she carries the scars of this today. Her father was very critical of her, instilling her with low self esteem and blaming her for everything, his actions included. Also being tall for her age she was bullied by her peers for her height. Growing up in this environment Zane felt her world had broken down. She had no where to go and was having suicidal thoughts. Her saviour was a teacher who had just graduated from university and wanted to coach a basketball team. She walked in to Zane’s maths class, looking for students to coach, and that was the moment that Zane’s life changed. Basketball made her feel useful for once in her life and good about herself.

Moving to the USA for her full scholarship, her basketball skills went from strength to strength and she started to earn good money, playing in the top women’s teams. But her insecurities her father had instilled in her were still there, just below the surface. She couldn’t believe she was worthy of this perfect lifestyle and every time she signed a new contract for a team, she would think to herself, “I am not this good to get this money”.

She found herself crying on the bathroom floor.

As her and her husband’s careers progressed and they started playing in different countries, Zane found out her husband was having affairs. Because of her low self esteem that had been conditioned in to her by her father, she felt the affairs were her fault. “I was always looking for the fault in me”. Her relationship with her husband was becoming like the relationship with her father, being bullied and criticised and always feeling she was the one in the wrong. “I was trying my best (in her marriage), until there was a point where I couldn’t move on”. She found herself crying on the bathroom floor, not knowing what to do. Eventually her and her husband agreed to divorce and although she knew it was the right thing to do, it was a very painful time for her. “I could feel my heart was broken”. The other hard part of her divorce was that her husband took all of their money, leaving her with 20 Euros to her name.

Zane first connected with the Buddhist principles when she heard the Abbot of Amaravati speak. She had stopped playing basketball in the summer of 2016, due to a knee injury. Having played professional basketball for 11 years, she really didn’t know what to do. Some friends were coming to the monastery for a short visit and one pulled out, so they asked Zane. She wasn’t really that interested at first, but decided to go. From the first day she loved the place. By the third day she asked one of the nuns if she could stay longer. She has now been there for over a year.

“Don’t believe everything you think”.

Zane felt the Buddhist philosophy was exactly how she wanted to live her life. It was “very close to my heart, even though I had nothing to do with Buddhism before”. For the first time in her life Zane felt like she was in the right place. She didn’t have to worry about what other people thought, a concern that had been conditioned in her since childhood. She realised she couldn’t live a happy life if she wasn’t happy within herself. And she realised she didn’t need other people’s approval to feel good about herself. Although the experience with her ex-husband was very painful, she feels it was one of her biggest lessons in life. It opened her eyes to her childhood conditioning. She needed to break the cycle of self criticism and low self esteem. Having lived for thirty years in one mindset, she knows now that “my mind is limiting me..I am learning to make peace with it”. And as one of the monks told her, “don’t believe everything you think”.

After her divorce Zane found her teenage list with her ten wildest dreams on. Although she had achieved 90% of them, even down to the specific detail of owning a BMW, what she realised is that how you appear to the outside world doesn’t make any difference if you are not happy within. Re-reading this teenage list, a year after her divorce, she still felt “in the same miserable place as before”. So now with regards to her future she doesn’t worry about what will happen. She isn’t looking to be a millionaire, which was the one dream she didn’t achieve on her list. “I just want to feel good, I want to feel peaceful, I want to feel happy. First I need to start with myself and make myself feel like that.” Only then will she be able to move on.

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Rebekah and Caroline – Living with dyspraxia

Rebekah had a traumatic birth. She was born with her umbilical cord wrapped around her neck and wasn’t breathing when she came out. After the initial panic though, there were no real concerns for her. The only sign that something might be wrong was that Rebekah never really babbled as a child, but Caroline thought it may be a genetic trait. “My aunt didn’t talk until she was five and she hasn’t stopped since!” It wasn’t until Rebekah went to nursery that her condition was recognised.

Rebekah has moderate learning difficulties and profound verbal dyspraxia, which means she finds it hard to make sentences and hard to remember words. She can’t sequence things, which also means she can’t grasp the concept of time, so any event she talks about is last week. There is no obvious pattern to her thought process, she will just talk about unconnected things. She also has slight physical dyspraxia, which means her brain knows what she must do to move her body, but the messages to the body parts gets muddled up.

“You always feel on edge, you have to say ‘this is Rebekah and she has special needs’”.

I ask Caroline about other people’s prejudices towards Rebekah and if this presents problems. She does find day to day encounters with strangers hard, because people do judge her and Rebekah. “You always feel on edge, you have to say ‘this is Rebekah and she has special needs’”. She remembers one time when Rebekah was younger and singing in the school concert. “She couldn’t say the words, she’s tone deaf and has one volume, which is loud. I was blubbing my heart out as I thought it was fantastic and I could hear other parents saying, ‘what is wrong with that child?’. You get that all the time.” She finds solace with other parents who have children with similar needs, and the various disability sports groups that Rebekah is involved with offer that informal support network. “It’s like therapy; we all chat together. You don’t feel like you have to justify anything at all”.

Caroline, and her husband Matthew, have made a conscious effort to treat Rebekah and her older brother the same as much as they can. They are disciplined the same and participate in family activities together; the family go skiing every year and run the 5km Park Run every Saturday. There are, of course, some ways they are unable to be treated the same. Rebekah wants her own house key and although her brother at age 12 could be responsible in the house by himself, Rebekah is not able as she wouldn’t be able to react to an emergency. “There could be a fire (on the stove) and she would just sit there and think it’s getting a bit warm, but not know what to do”.

The Special Olympics is a multi-sports event for athletes of all ages with intellectual disabilities.

For a girl of 12 though, Rebekah has already achieved so much. She competed in the Special Olympics in Sheffield in the Summer and was one of the youngest team members from the Eastern Region. The Special Olympics is a multi-sports event for athletes of all ages with intellectual disabilities. Rebekah entered three swimming races and won a bronze medal in the backstroke. I ask her how it felt to stand on the podium. “Happy. Sad”. Happy for the obvious reasons but sad because she is very competitive and wanted to win the gold.

Another benefit of training with the Special Olympics team, which is based in St. Albans, is that the team have a good social life. They go to concerts and participate in different activities, so as Rebekah gets older she can hang out with others who have intellectual disabilities like her. “Nick,” interrupts Rebekah. Caroline sheds some light, “She met him and had a bit of a holiday romance (at the Special Olympics)…she talks about Nick a lot”.

Caroline has recently started working at the school and has now become use to the normality of sheep walking through the corridor.

Rebekah now attends a Special Needs school, which has considerable grounds and is resident to numerous animals. Rebekah tells me about all the animals; rabbits, a snake, insects, a chameleon, donkeys and sheep. Her favourite animal is the red labrador, Maple. Caroline has recently started working at the school and has now become use to the normality of sheep walking through the corridor, a parrot perched on the shoulder of one of the staff members as he goes about his daily life at the school and a school nativity play with real animals. “The children don’t even bat an eyelid, no-one does,” laughs Caroline.

In some ways Rebekah is just like any other 12 year old. She argues with her older brother over incidental things, winds her parents up playing loud music (its Bars and Melody at the moment, which she plays “24/7” according to Caroline), participates in sporting activities and falls in love on holiday. But Rebekah’s journey to adulthood and independent living is full of a lot more hurdles and anxieties for both her and her family than the average teenager and their family would ever face. However Caroline seems to face these anxieties in a very practical way, and as she says, “you do have to have a sense of humour if you’ve got a special needs child”.

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Denise – Losing a loved one

“It’s very sad, but at the same time, to work together, then you fight together and then you die together, there is something poetic about that”.

When Denise started writing a story set in World War I, she couldn’t have anticipated where the journey would take her. There was something intriguing about that particular war that really resonated with her. She then discovered two great cousins and a great uncle had died in World War I. “It was almost like fate or an omen and it made the story more profoundly powerful and personal”. The protagonist in Denise’s novel is killed on the Somme; in real life, one of her great cousins, Clifton, was injured in the Battle of Pozieres in July 1916 and sadly died from his injuries. Clifton’s younger brother Hamilton was 18 at the time of his brother’s death. Two years later the same fate befell on the family, as Hamilton was reported Missing In Action after the Battle of Soissons; his body was never located. When Denise conducted further research, she discovered there was a war memorial in Apsley. It commemorated those who had worked at John Dickinson’s and had died in the war, including her family members. She located the memorial hidden behind the undergrowth on the Paper Trail Trust site and visited it one night, by herself. “I felt scared.. but I thought I am with all these men, with all these brave souls. I didn’t feel alone.”

Shining a light on those who were previously hidden in the darkness.

Not one to forgo a challenge, Denise felt she couldn’t leave the war memorial garden in its neglected condition, so she enlisted numerous volunteers and solicited generous donations of materials from local companies to enable her to restore and landscape the garden around the war memorial. “We had giggles and laughter and blood and sweat and bruises!” Even her mother, who is in her 70’s, helped by bringing sandwiches and drinks for the volunteers. The transformation in 19 days was astonishing and the design has been carefully thought through; a gravel path, a small stone bench and some wonderful small metal sculptures that represent the army, the navy, the air force and the paper mill workers. At night the memorial, and the names of the deceased, are lit up, shining a light on those who were previously hidden in the darkness.

The doctors said when he turned 16, they would be able to give him a new heart.

Denise has more in common with some of the soldiers that survived, and the families whose children died, than I first realised. At the age of five, her older brother, Carl, was diagnosed with a narrow aorta. It was the late 1960’s so initially there wasn’t the technology to perform any surgery that would help. When Carl was around 12, he had an operation to open up his aorta, which gave him more oxygen. “Once he had the operation he shot up, he got taller and could do a lot more things, he had the energy”. As his heart was so stressed, the doctors said when he turned 16, they would be able to give him a new heart. Weeks before his 16th birthday in December, he died. Denise was 14 at the time.

It was an extremely difficult period in her life, “so profoundly painful”. People around her, especially her parents friends, said she should be strong for her mum and dad,. “I felt I couldn’t mourn in front of my parents”. Her only place of solace was her bedroom. “If my mum came in, I would be begrudging her, as it was my isolated domain, that was my time to grieve. I would be wiping away my tears.. I didn’t know how to handle it really”. She could talk to Carl’s friends, and they were supportive, but when they came to the house she felt it was to see how her parents were coping, rather than how she was. She felt her parents grief was overshadowing her own grief.

“I think, is that what they really thought of me?”

She admits that she went off the rails, “I was a horrible teenager, not very nice”. She found her old school reports from the year before, and the year after, Carl’s death. The year before his death, her reports described how well she was progressing, noting how she was focused and keen to learn. The year after Carl’s death, her school reports describe how she was not learning and was being disruptive. In those days there wasn’t the counselling that is available now or the understanding of a student’s behaviour due to their circumstances. She sounds slightly bitter when she thinks of those reports, as it showed the lack of empathy from her teachers. “I think, is that what they really thought of me?”  She wonders how different her life would have been if her brother hadn’t died. “It took a lot out of me, psychologically scarred me”. To make up for her lost education, she went back to night school in her late twenties and studied for her English and Maths GCSE’s. She then went on to obtain a degree in Molecular Biology.

It took her twenty years to seek professional counselling. She felt that for the best part of that time she had lost so much of herself. “I needed to close one door..not on my brother. I closed the door on the pain and the confusion”. Like some soldiers who have lost friends in battle, there was also an element of Survivor Syndrome. “You start saying to yourself ‘You were so much brighter, why did you go?’ .. It’s almost like you feel guilty for living”.

“You could I say I am living for my brother, for them (the fallen soldiers), but I am living for myself ultimately.”

She now feels she is catching up on her missed opportunities. “You could I say I am living for my brother, for them (the fallen soldiers), but I am living for myself ultimately.” She recently walked the Three Peaks Challenge, over six days. She tells me this as if I shouldn’t be too impressed, because it wasn’t in the prescribed twenty four hours that climbers normally aim for. I am still impressed. She still walked up (and down) each highest peak in Scotland, England and Wales. And the first two peaks she went to alone. She initially embarked on the challenge to get herself both mentally and physically fit, as she would like to attempt Everest Base Camp. However she decided to do the challenge as a fundraiser for the British Heart Foundation, in memory of Carl. In May she participated in Women V Cancer – Ride the Night, a 62 mile bike ride. The other catalyst for Denise’s change in lifestyle was seeing her parents grow older and suffering from heart disease and diabetes through lifestyle choices. Sometimes parents become our role models in terms of what not to do.

Denise is still writing her WWI novel and I am keen to read it when she has finished. She understands the emotion of losing a loved one in the prime of their life, and a community who are unable to understand the pain that those who are left behind, are going through.

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