Forty years ago this week, on 17th April, my friend Emily Collingridge was born. She was a warm, caring and spirited young woman, whose fierce determination helped her carve a path through a life of tremendous suffering. On that spring day in 1981, no one could have imagined the impact that her short life was to have – not only on those who knew and loved her, but on many thousands of strangers too.
Emily died of severe ME at the age of 30, after nearly a lifetime of illness. Every year on the anniversaries of both her birth and death, we, her friends and family, join together in remembrance. Marking her 40th birthday this year seemed especially important. An occasion that is a landmark in life, also takes on significance in death. It prompts reflection on the years that were lived, as well as regret for all that could not be.
“I remember her as a strong character who was also sensitive and vulnerable,” says Emily’s mother, Jane Collingridge. “Emily had a tremendous capacity to love. She cared about other people and was always prepared to stand up for what she believed in. She had such potential.”
Emily’s strength of character was evident not only in the way that she faced her own illness, but also in her desire to make a difference to the lives of others with ME. When I first knew Emily, in the late 1990s, she was working as PR officer for AYME, a charity (now disbanded) for young people with ME. Despite being largely bedridden at this point, the energy she brought to her role was always evident. Media coverage of ME in those days was scarce and often derogatory, but Emily helped generate countless newspaper, TV and radio items about young people with ME. She wrote a regular page in AYME’s newsletter, enthusiastically detailing her work and describing her future plans.
From AYME’s newsletter, 1999
In later years, after a period of such severe ill health that she nearly died, Emily drew on her experiences to write a highly acclaimed book, Severe ME/CFS: A Guide to Living. Offering detailed guidance on every aspect of managing severe ME, it has helped thousands of people around the world, who have turned to it for guidance in the bleakest of times.
Kara Spencer has a severe, life-threatening form of ME, and requires specialist nursing care twenty-four hours a day. “Emily’s book is the legacy she left behind to support us all,” she says. “I don’t know how I’d have coped without it. It has been my ME bible. I wish I could thank her, but no thanks could ever convey the depth of my gratitude and admiration for what she achieved whilst suffering so much. We should never forget how many of us are in her debt for all that she did.”
“Emily had a tremendous capacity to love. She cared about other people and was always prepared to stand up for what she believed in. She had such potential.” – Jane Collingridge
“I think Emily would want to have been remembered as somebody who was loving and was loved,” says Jane. “Somebody who made a difference and achieved, despite the difficulties she faced. Somebody who was respected.”
For those of us who were her close friends, this is abundantly true. Cathy remembers Emily’s “remarkable intelligence and insight” and “great personal kindness”. Annabel describes her as “indefatigable and hard working, with a fierce intellect – but above all, empathetic and kind.”
Kelly, like me, knew Emily for many years. “Emily was strength, hope and kindness,” she says. No matter how ill, she was a guiding force. Emily was the bright light in her own darkness, and she brought light to mine too.” When Kelly married shortly after Emily’s death, she had candles and pink roses on the tables at the reception, in honour of Emily. Pink roses were Emily’s favourite flower, and are always central to our remembrance of her.
When Emily turned 30 in 2011, she invited her friends to celebrate with a virtual spa day. That birthday was to be her last. Ten years on, we have chosen to mark her 40th birthday in a similar way, with her friends treating themselves to something special on the day. We will eat a slice of cake and raise a glass to our dearly loved friend, knowing that she would approve.
Emily enjoying a brief spell of better health
And yet. Celebration is painful when the person central to it is no longer present. When their light was extinguished not only by agonising illness, but also by the ignorance surrounding it.
It could not be more movingly described than by Jane. “To be honest, all my memories of her are painful. Not just the extreme suffering, the hurt and the constant fight to get recognition for the severity of her illness. But the happier times as well, as they were too short-lived.”
Emily is a lasting inspiration to me, as I have described before. But I too find that my happy memories – of her sparkle, her determination, our shared love of Wimbledon, her joy in Christmas – inevitably walk hand in hand with the knowledge that she suffered appallingly, especially in her final months. And I know that she would want the world to be reminded of this, particularly when so many others continue to suffer as she did. As Vikki, another mutual friend said recently: “Nothing has really changed since Em died.”
In her final months, very seriously ill in hospital, Emily wrote to me: “This really does feel like a nightmare because it’s so horrible, so shocking and so unbelievable that you’d think it could only ever happen in a dream.” (Emily described her illness in more detail in Emily’s Appeal, written a year before her death.)
One of Emily’s many hospital admissions
Her suffering was compounded by key members of her medical team struggling to accept that she could possibly be so ill. With considerable prescience she had written to me some months earlier: “I can’t register complaints about all of the bad treatment I’ve received. But I am going to try fighting the hospital over their regular refusal to meet my basic needs as an inpatient. It results in suffering which most people would find incomprehensible, and puts my life in danger.”
Yet even as she feared life slipping away from her, Emily’s spirit remained strong. “There’s so much I love about life. Even when very severe ME is putting me through sheer hell, there are almost always small things that will make me smile for a moment,” she wrote to me, a few months before she died.
Among all who loved her, there is a determination that neither Emily as a person, nor the fate that she suffered, will ever be forgotten.
“You know that I’ve faced up to the reality of death, which involved emotions too big for me to contain. But I’m still fighting as hard as I can to have a good long life – it needs to be long, as you wouldn’t believe the size of my to-do list!” That list consisted largely of ideas for improving the lives of others with the illness. “If I can, I will work to do all possible to lessen the unnecessary suffering of severe ME,” she told me.
As she recovered from one particularly traumatic hospital admission, Emily was mentally drawing up plans for designated rooms in hospitals where all sensory stimulation could be kept to a minimum. And for teams of nurses offering specialist domiciliary care for severe ME patients, to reduce the need for damaging hospital admissions. Such services could have saved Emily’s life.
Emily and her devoted mother, Jane
In the week when Emily would have turned 40, we remember her with love, admiration and grief. A vibrant spirit trapped within a body crippled by suffering, and badly let down by the very system that should have protected her. But a spirit which nonetheless found a way to shine in life, and which continues to shine in death. Among all who loved her, there is a determination that neither Emily as a person, nor the fate that she suffered, will ever be forgotten.
It is only fitting that the final word should go to Jane, who lost her only child when Emily died. Her devotion ensured that Emily’s life, despite all its hardships, was one that was always filled with love.
“I miss our animated discussions and our giggles. Tiny moments, that to others would seem insignificant, snatched from us. I remember her as my beautiful daughter, my best friend, my ally. She enriched my life in so many ways.”
I have written several times previously about Emily, in the following pieces:
Severe ME Awareness Day: Emily’s Appeal
Image credits: all photographs courtesy of Jane Collingridge.
Image descriptions:
Main picture: A portrait shot of Emily Collingridge, smiling at the camera. The image is on a background of pink roses.
Other images: 1) A cutting from AYME’s newsletter, with a photo of Emily and a short piece written by her about her role as PR officer. 2) Emily Collingridge sits at a table in a conservatory, eating a snack. She is wearing a bright dress and sunglasses, and is smiling at the camera. 3) Emily lies in a hospital bed, holding a bunch of flowers. 4) Emily lies in bed at home, with her mother Jane sat beside her. Jane is holding Emily’s hand and both are smiling.
A Life Hidden 