Merryn’s Smile Day
Merryn’s Smile Day is an annual event when we send Smiles to those affected by Severe and Very Severe ME in Merryn’s memory on her birthday, 13th May.
Merryn Crofts sadly passed away from Severe ME in 2017 just days after her 21st birthday. I was lucky enough to be her friend and thanks to her family’s blessing Merryn’s Smile Day was created in 2019 to celebrate her birthday. Smile For ME remembers Merryn by sending a Smile in her name to those suffering with Severe and Very Severe ME. Merryn loved sending little gifts and also loved it when happy post arrived for her so we are glad to be able to do this in her memory.
Merryn’s Smile Day Smiles
187 Smiles have been sent in Merryn’s name. Merryn’s Smile Day Smiles are different to our regular Smiles, the presents are not wrapped as opening presents with Severe ME can be difficult in many ways. The presents have included balloons, teddies, cosy sets, flowers, pamper sets and bedroom accessories. They were all sent with Merryn and Severe ME in mind. As Merryn was the reason this all happened we included some of her favourite things and every present was packaged with love which Merryn radiated.
In 2020 our Merryn’s Smile Day plans were unfortunately unable to go ahead due to COVID-19 so instead Clare Norton, Merryn’s Mum, kindly wrote something for us to share so you can get to know the wonderful Merryn more.
It was with sadness that I heard Smile for M.E weren’t able to send out their packages as normal due to Covid 19 as I know how important their work is and the effect it has on the recipient, and obviously that also meant Merryn’s Smile Day couldn’t happen. So when Alice asked me to write something about Merryn and share a little bit of the person behind the day it felt like a wonderful way to honour Merryn. But how do you describe a ball of mischief, love, trouble and gentleness, how do I encapsulate her love for life and her beautiful heart? I will do my best, although I’m sure I’ll fall short.
Merryn was a bundle of energy with an amazing joy at life. She didn’t walk into a room, she bounced. She would draw people to her and her infectious laugh could be heard by all around her. We’ve been told by school friends of Merryn’s that her laugh could be heard echoing down the school corridors, you could hear her before you saw her and this is an enduring memory of her.
She was fearless and a daredevil. The worst thing you could do was tell her she couldn’t do something or dare her. On a family holiday there was a HUGE inflatable slide. Amy dared Merryn to jump onto it. I remember saying to Amy “why on earth did you say that!” and Amy replying “even Merryn won’t do that” Minutes later we saw Merryn jumping high into the air and bouncing all the way down the slide!
Merryn had the kindest heart. No matter how ill she was she always thought of others, never forgetting birthdays, special occasions or a just because gift. If she knew a friend was going through a particularly bad time she would send a card, a little gift or her favourite – a balloon, as she always said balloons make everyone smile. It gave her joy to think she had made someone smile.
She was a fashionista with a style totally unique to her! She somehow managed to put clothes together that shouldn’t go at all yet on her they worked. She was approached numerous times when out and about by fashion bloggers and photographers wanting to take her picture and write about her style. Her hair – big, backcombed and usually topped by a big bow had its own Facebook page set up by someone at school, Merryn thought it was hilarious!
Merryn hated injustice and would always support the underdog. She was fiercely loyal and particularly passionate about supporting the homeless and homelessness issues.
Merryn was tenacious and stubborn. Once she made her mind up, that was it. She was relentless in her quest for a nose piercing and pestered me weekly from the age of 13. The answer was always the same- she could have it when she was 16 but she never gave up and in the end she did get it done slightly before her 16th birthday much to her joy. I think this tenaciousness helped her cope with the unrelenting suffering she endured with Severe M.E.
Merryn loved school, although more for the social aspect than the learning! She was devastated at missing a lot of her final year, and too ill to sit her exams was given leniency and awarded predicted grades based on her work. Her proudest achievement was receiving an A for drama, a subject she loved and was so good at. Her dreams were of studying Performing Arts at LIPA and pursuing an acting career with her dream job being The Dr’s assistant – she was a huge Dr Who fan, particularly Matt Smith. Merryn had amazing comic timing and one of her last performances at school was a Victoria Wood sketch (the exercise one). She was hilarious and fearless in her portrayal of it.
Merryn was fun, she wasn’t a stay at home kind of person, she wanted to make the most of every day and was always up early ready to take on the world. New adventures awaited and whether that was family fun or spending time with friends the day was never dull, it was sure to involve laughter and ridiculousness and be planned in the moment, although often that was too much planning – one such adventure involved London, pot noodles and no forks and is for sure the cause of some of my grey hairs, Em Foster you know what I’m talking about!
Merryn’s two mantras for life were ‘Count Your Blessings Not Your Flaws’ – the lyrics to a song by one of her favourite singers Lauren Aquilina and ‘Life Isn’t About Waiting For The Storm To Pass, It’s About Learning To Dance In The Rain’ – which was above her bed. Merryn lived by both of these and I am always in awe of her amazing courage and bravery, she was and will always be an inspiration to me.
In 2019 Clare kindly wrote a piece for us to share to mark Severe ME Awareness Day, 8th August. She dedicated this to Jen Chittick, Screw ME, who also sadly lost her life to Severe ME.
It’s so hard to know where to start writing about Merryn and M.E. How to condense 6 years into a readable account. However I try I feel I never fully explain the horror of Profoundly Severe M.E and what Merryn endured.
Merryn was a happy go lucky, very loving, huggy child, a bundle of energy, a people person, endearing and occasionally exasperating in her stubbornness. A stubbornness I have no doubt helped her endure throughout her illness. A stubbornness that made her ask me practically everyday from the age of 13 if she could get her nose pierced. The answer was always the same – “when you’re 16”. Still she asked and cajoled and I relented and she got it done a little bit earlier in the end!Severe M.E has a myriad of horrific symptoms but it is also an illness of losses. M.E is a thief, it robbed Merryn of the life she dreamed of, of studying Performing Arts at LIPPA, seeing her friends, a family of her own. M.E robbed her of these in increments as she struggled to be able to talk, lost the ability to walk, to even sit up at the slightest incline, becoming housebound, then bedbound, unable to care for herself in even the smallest ways, unable to swallow, unable to eat or drink at all due to gastrointestinal failure resulting in the need to be fed intravenously.
For the last 4 years of her life Merryn lay in a dark, quiet room. Light, noise, touch and movement (of herself and others) hurt her and caused Post Exertional Neuroimmune Exhaustion – a worsening of symptoms following any type of exertion. Movement hypersensitivity meant just someone being in the same room caused all her symptoms to worsen, leaving her unable to tolerate much of any social interaction without having myoclonic seizures, becoming confused, disoriented and her pain worsening. And this worsening of symptoms didn’t ease, each time it happened compounded and got worse causing further deterioration. With Severe and Profoundly Severe M.E every action has to be thought through carefully and the impact they could have. Even when in worsening pain and needing extra pain relief Merryn would have to weigh up the benefits of feeling some ease to her pain against the damage that would be caused by having a nurse in her room administering the injection.
So Merryn lay in the dark, tube fed, often catheterised and in such pain, pain beyond measure or imagining and unable to even have the comfort of a proper cuddle. We devised a way of me lying carefully on the bed next to her with my arms around her but not touching her except for her hands or face which were places that she could sometimes tolerate touch. Merryn was cared for by myself and our local hospice at home for the last 2 years of her life. Her hospice Dr had worked in palliative care for 10 years and she said she had never witnessed such suffering as she saw Merryn endure.
Many people use the battery analogy or the spoon theory to describe M.E, but how do you describe Profoundly Severe M.E where not only is there no battery left at all but it’s a negative battery?
For us, the best analogy is a bank account. A heathy person is in the black with credit, sometimes the account gets low but this is manageable. Merryn was in the red, drastically overdrawn and each interaction, however necessary, such as the District Nurse changing Merryn’s syringe drivers or giving desperately needed top up pain relief injections etc led to an increased overdrawal. Almost like a loan shark – the interest just keeps adding up, getting more and more overdrawn. There is no respite, the debt gets bigger and bigger, crueller and crueller.
So many losses and so much pain. M.E took so much from Merryn but it never took her giant heart, her gentle, loving, caring soul. She was, is and remains my inspiration and the reason I will always fight for health equality in M.E, increased funding for research and awareness.
And the sadness is this is just our story. This is still happening to thousands of Severely and Profoundly Severe people with M.E. Lifes lived unseen and in pain day after day, month after month, year after year. It’s got to stop.
I’ll end with some words by Merryn. She wrote these aged 18 years old (3 years before her death).
“Having Severe M.E is like being trapped in your own body every single day. There is no rest, you are bedbound all day every day.
It snatches the most simple things away from you like being able to wash yourself, even in bed. Being cared for in every way possible. In terrible pain, from everything. Not being able to talk on the phone or have visitors and feeling worse about saying no every time someone asks again.
Months and months in hospital. Severe infections. Breathing problems. Low immunity. Problems anywhere and everywhere in the body. Paralysis. Severe hypersensitivity. The list is endless, and if I was physically able to type I would carry on. Spread awareness and remember all of us and all of those who have lost their lives.”