In May this year, I wrote about my friend Kara and her dream of recording an album. Gravely ill with ME, Kara had written a collection of songs that expressed her emotions as her health declined. With the help of a family friend, she had recorded the vocals one line at a time – a process that had taken years.
When I wrote about Kara in May, it was in the hope that musicians might come forward to help finish some of the songs. Doctors had warned her that her life expectancy could be very limited, and she feared that she wouldn’t live long enough to see her album completed. We couldn’t have imagined that, just three months later, I would be writing again with the album finished and ready for release.
Kara’s songs have been brought to life by an incredible team of musicians and producers, who responded to a BBC appeal that followed my blog post. Led by sound engineer Liam Hicks, they have donated their time and talent for free, amplifying the voice of someone who would otherwise never have been heard. I cannot recall anything like it before: a group of people with no personal experience of ME, giving so generously of their resources to a cause that can hardly be said to be popular. Those with severe ME are unseen by the outside world, and very often forgotten. It has been moving to see these musicians mould Kara’s heartfelt lyrics and vocals into full recordings, with no expectation of reward.
The resulting album, It’s Still M.E, is an expression of Kara as a person, and a powerful voice on behalf of all with severe ME. It is a beautiful musical creation that stands confidently alongside the works of more established artists. Although Kara’s songs are inspired by her suffering, this is not an album about illness: her music encapsulates the experience of being human. The album will resonate with anyone who has known the pain of loss. Anyone who has lived through the anguish of dreams destroyed. Anyone who has felt the wary flicker of hope in darkness. It will also touch all who have known love: from the ache of its being denied, to the joy and comfort it brings when all else is lost.
Kara recording from her bed
Kara describes her album as being about “love, loss, anger and pain.”
She has channelled rage and despair into songs such as Crushed:
“I want to take a mallet to the stained glass. I want to rip up every flower, every tree.”
In This Is Love, she cries from the depths of suffering:
“You have hope, but I can’t cope. Let me go. Let me go.”
To the beloved nephew she fears she might not live to see grow up, she promises, in Baby Breathe:
“I will hide in your heart, I’ll reside in your skin. I will live every time that you breathe.”
There are songs specifically about the experience of having ME at a time when medical understanding and media portrayal of the condition have been poor.
“So many lies. So many lives,” she mourns in Lies, a song about the scandal of the PACE trial.
The album ends with Remember Us, a moving plea to the world on behalf of all with ME. “You saw my face, you touched my skin. Couldn’t you feel the pain within?” she asks the doctors who disbelieved her. The song recalls the loss of her close friend Merryn Crofts, and asks the world to remember all who have died and all who continue to suffer from an illness so terrible it is beyond most people’s imagining.
I have had the privilege of seeing Kara’s music grow from short voice memos recorded on her phone and sent to me from her hospital bed, to the professionally produced songs that they are today. It has been a remarkable journey, driven by a tentative dream and the generosity of strangers willing to make it a reality.
Kara’s music touches deeply and will have a profound effect on anyone who listens, no matter what their circumstance in life. I’ve wept when listening to her songs, but in a way that has felt strengthening rather than depleting.
The true gift of Kara’s album is its reminder that, despite the suffering and injustice that exists in this world, there is still love. Indeed, the abiding memory of her music is its astonishing beauty. When one considers that it originated from a place of crippling suffering, in the face of a devastating prognosis, it is nothing short of musical alchemy.
All profits from the album will go towards establishing a ground-breaking post-mortem facility for research into the most severe cases of ME. In this respect Kara’s album leaves a legacy of multiple layers: the beauty of the music she has created; the important message behind it; and the hope that others in the future will not have to suffer as she and countless others have.
Kara’s album, It’s Still M.E, is released on Saturday 8th August, which is Severe ME Awareness Day. It can be pre-ordered now. Her single, Baby Breathe, is out now.
Anyone interested in buying her music or learning more about her aim of raising £100,000 should visit her website: www.karajanesings.com
A Life Hidden 