Reflections on the life of Esme

“I learnt that courage was not the absence of fear, but the triumph over it” Nelson Mandela

One thing that Esme loved was snow –as deep and soft as possible. She fixed on her first skis aged 4, in Norway, and near the end of her life was still on the snow, hurtling down the pistes of the French Alps in April this year. We live on a hill in Kinnesswood, with a sloping park between our house and Portmoak Primary School. From her earliest years, when the snow arrived Esme was out with her sledge or skis.

The hill helped Esme and me get to school. We waited until the school bell rang then sprinted down the hill, just in time to join the back of the line into Portmoak Primary.

Once inside school Esme got on well. Parents’ evenings often produced comments from teachers along the lines of “it has been a pleasure to teach your daughter this year”. I always wondered why similar comments never seemed to be made about myself!

Esme loved dancing and we sat through many shows at Perth Theatre where Esme performed with the Nikki Matthews Dance School. At home Esme and her close friend, Eilidh, were always putting on dance shows in the living room, with huge effort put into costumes and music.

It’s easy to see where Esme got the title for her Facebook page – ‘Esme’s Adventure’ – because we always went on adventurous holidays. From skiing trips in Norway to climbing and trekking in the Alps and in the Himalayas and searching for tigers astride an elephant in India.

At home she enjoyed nothing better than family gatherings and celebrations. She was always the one to bake a cake, make her own cards and set the tone for the party by getting dressed up. She loved her clothes, always colour coordinated and of course lots of purple. I remember one occasion when we went to Pitlochry for Grandpa’s 90Birthday Party, we arrived at the Athol Palace Hotel without Esme’s suitcase. Disaster- Dad was duly sent all the way back home for it and he arrived back just in time for Esme to get her outfit on.

Dark clouds, however, were gathering. One Saturday in November 2006 Dad and Esme enjoyed a short trip on their cross country skis in the Cairngorms. On the Sunday Esme lay on the settee with a bad headache. By the following Friday she had been operated on for a brain tumour. She lay in the Hospital for Sick Children in Edinburgh, completely paralysed apart from some small movement in her left hand. She could not even scratch her nose. It was all so sudden and devastating.

But Esme was a fighter, which is just as well to cope with the grueling chemo and radiotherapy regimes. Interestingly, her vocabulary proved to be somewhat more extensive than we had realised – she said she learned these words from our school bus! With no control over her body it is not surprising that she used her voice to vent her frustration. But the long journey of physio presented her with the sort of challenge that she would rise to and so the slow transition had begun - from bed and hoist, to big then small wheelchair, to walking frame and finally to a bright multi-coloured walking pole.

The hospital experience isolated her from friends, there was no Internet and you were not allowed to use mobilephones, Esme was unable to keep in contact with friends who found it difficult to understand what had happened to her. No wonder she expressed her feelings in a direct way – “Why has this happened to me? I am too young to die”.

Eventually, however, more time was spent at home instead of in hospital. Esme took to the water again, the hydrotherapy pool in Perth allowed her to feel a sense of independence again as did a trike bought for her by a charity.

A tandem appeared as well, donated by friends. This gave us the freedom to do trips as a family again and we were soon off to the Alps riding the bike trails. Esme, singing to herself once again. I was always surprised by the power Esme’s legs could generate from the back of the tandem, a testament to how strong she was.

One day Esme spotted on the internet that there were machines called “snowbikes” and quicly stated ‘I think I could do that’. A day with Darren the instructor at Aonach Mor was enough. Soon Esme had her own bike and over the next few years Esme and the snowbike were seen on ski runs in Scotland, Norway and the Alps, I will never forget Esme’s beaming smile at the ability to slide down the snow with us once again.

The Teenage Cancer Trust had become increasingly important. Regular get togethers for meals, film nights and general chat with cancer battlers of her own age, kept Esme going. Annual trips to Centre Parks in Nottingham, for “Find your Sense of Tumour” weekends, where the Trust brought together teenage cancer sufferers from across the UK, were highpoints.  And then there were sailing trips with the Ellen MacArthur Cancer Trust including the Isle of Wight Raceinvolving 1,600 boats, of all sizes. She was very proud to be one of the few people to survive without being seasick during the 9 hour venture!

Many people who have met Esme have commented on her cheerful nature and happy smile but there were dark times aswell. Returning to school after missing most of first year was particularly hard. Esme is brutally honest about what life was like at school. This is what she wrote in ‘her story’:

”Nobody really talked to me as I had changed. I was in a wheelchair, had no hair and I had an assistant to help me get around. I hated school not because of the work but it was just so lonely not being able to participate in everything people my age were doing.”

But school did have its high points. The support given by classroom assistants and teachers helped Esme to secure good standard grades. And great support and encouragement enabled Esme to complete her Duke of Edinburgh Bronze award. Then there was a triathlon – to some surprise she asked if she could participate – because in her mind she could walk, swim and cycle so why not? The teacher, Mr Urquhart, organizing this was enthusiastic and Esme completed the race with her usual quiet determination and strength.

This quiet determination, courage and perseverance were recognised by many. Awards from Kinross High School and Perth and Kinross Council were followed by an evening at the Usher Hall in Edinburgh. Esme was delighted to win the Radio Forth award for her fund raising efforts.

Music and art became an increasingly important part of Esme’s life. On today’s Order of Service there is a picture of a polar bear crossing ice fields at sunset. This was produced by Esme for the 2007 Portmoak Art Festival. Unable to hold a paint brush, Esme solved this problem by getting Mum to tear up strips of coloured tissue paper which Esme pasted onto card, before blending the colours together with oil pastels and adding the outline of a polar bear.

Music was a huge part of her life. She was always listening to music and had a very wide-ranging taste. This kept her going during hard times and she was never seen without her ipod. She had great fun going to concerts and she had tickets again for T in the Park this year but sadly never made it. And of course she continued to play her harp –the instrument she loved. She made regular trips to Edinburgh for lessons with Fiona and to play with the Edinburgh harp group. With her 18birthday money she was determined to buy a new more portable harp – this beautiful purple clarsach arrived from France four days before she died – hearing Esme play Silent Night on it will be an abiding memory of mine.

A real highlight for Esme in terms of re-gaining her independence was learning to drive and passing her test last October – first time – which was much better than me! This gave her independence to get to college in Kirkcaldy where she was getting on well on a business course.

She said “I thought my life was getting back on track”. But in early December some balance problems led to a hospital visit. The unexpected news was devastating – the same brain tumour had returned, treatment options were limited and life expectancy was less than a year. At the beginning of the year she bravely embarked on a clinical trial in Newcastle after asking if her participation would help other children in the future, whatever the outcome for herself. The weekly trips to Newcastle by train became like a holiday, and she experienced first hand the fantastic new TCT unit down there.

Participation in the trial gave renewed hope and Esme was able to celebrate her 18 birthday in style in February. She was out and about enjoying the freedom of life in her blue Corsa and always looking for a way to visit her Granny in Newtonmore, in March she decided to tackle the A9 on her own over a snowy Drumochter Pass. She arrived safely and was so pleased with herself. It was only after this trip that she got a letter from the DVLA saying that her driving license had been revoked in December because of her surgery. But the renewed hope of the clinical trial was short lived.  After two months a brainscan revealed that the tumour was continuing to grow so the trial was halted.

The next day we drove onto the ferry and on to Meribel in the French Alps. Before anything else happened Esme was going to enjoy one last week of snowbiking, including two days racing at the French Championships! She impressed everyone she met out there with her courage and determination even though it was evident that she was struggling with her balance. She came home to the rest of her life in a wheelchair. 

In early April Esme asked me to help set up a Facebook page ‘Esme’s Adventure’ which told her story of the cancer journey and listed people she would like to meet, activities to do and places to go. As she said “I am determined to live life to the full and enjoy every moment”.

In no time at all people were responding – Chris Hoy and his wife Sarra were the first to come over, Amy Macdonald and Emeli Sande both made time to meet her, she went hot air ballooning, she took part in fashion shows, she visited all the Teenage Cancer Units in Scotland – meeting Kevin Bridges on the way and all the while raising awareness and funds for the Teenage Cancer Trust. She did the Race for Life in Kirkcaldy pushed in her wheelchair by Eilidh. And finally Wimbledon – where we sat on the edge of the centre court, under the royal box, watching Andy Murray win his first match. Meeting Andy Murray afterwards was the icing on the cake for Esme.

Esme’s spirit of adventure was not dimmed even as her mobility deteriorated further and we had to use a stairclimber to get her around the house. She would click the safety belt and pretend she was in a plane, and announce where she was going today – New york, Sydney, Belfast…always somewhere she had not visited yet.

These adventures over the past few months kept Esme going and gave her renewed drive and determination to make the most of her short life. Just two days before she died we were out for a meal to celebrate Dad’s birthday. She ordered a huge glass of her favorite drink,orange juice, and after a bit of a struggle she spilt the glass all over thetable, immediately ordering another and beginning this struggle to drink from it again. All the while she told Dad and me off for trying to help her. She dropped this second glass, with it smashing over the table. When pudding came,much to our surprise, she ordered a latte and this, obviously, came in another huge glass. By the time her pudding was finished the glass was empty and Esme had not spilt a drop. This just shows her shear determination to live as full a life as she possibly could right up until her last day. Esme undoubtedly triumphed in the end.

Esme Morris Macintyre

14 Feb 1995 – 7 July 2013