n the past few weeks, there has been more severe M.E. awareness than I have seen in a long time. After it was announced that my book A Girl Behind Dark Glasses had one best non-fiction at The People’s Book Prize 2020, it had been featured in my local paper, the radio and on the local television.
Then a week later, Kara Jane’s stunning single ‘Baby Breathe’ was released, days before her album was too. Kara’s vocals are simply haunting and are truly beautiful.
Kara suffers with very severe M.E., she is bed bound, reliant on supplemental oxygen twenty-four hours a day and round the clock care. For anyone to release an album, is a huge achievement but for Kara to have recorded eight songs is incredible. She wrote all the songs and recorded them by singing a couple of lines a day for two years.
When I was as severely unwell as Kara, I remember how fogged my brain was, how I felt like I was existing and unable to portray my feelings and what I was thinking. Before I became unwell, I was always very musical. When the M.E. Monster struck and was at it’s most severe, I didn’t have the energy to do anything musical. My noise sensitivity was such that I couldn’t even listen to music.
In my time in hospital where I was suffering with a similar severity of M.E. to Kara, I came up with a Christmas song that I called Spread the Hope. I could hear the tune in my head and I painstakingly came up with the lyrics over many months. It took me months to create a small voice recording on my phone, and that was only singing four lines of the chorus!
So when I saw that Kara was releasing a whole album, I was inspired and amazed because I remembered how much one song had taken out of me.
The album was released on the 8th August, which is also known as Severe M.E. Awareness Day. It couldn’t have been a more perfect date. When I listened to the album, I understood every mood of every song. ‘This is Love’ depicted the gratitude and love for Kara’s family and friends and what their love and sacrifice meant. It made me want my family to listen to it and to listen to the appreciation.
I found ‘Baby Breathe’ overwhelming, because I felt like it was something I wanted to sing to my daughter, my nieces and nephews, who are so incredibly special to me. M.E. has made me realise what is important and how much those around me mean to me.
The pain and frustration from ‘Crushed’ speak for the thousands of M.E. sufferers who are desperate to be helped. ‘I want to scream and shout at everything’. The truth with severe M.E. is that you don’t have the energy to feel or have any emotion. It is too exhausting to cry or shout, and it bubbles inside us like ah erupting volcano. ‘Crushed’ reignites the frustration I felt when I was trapped in my one room.
Kara Jane’s album speaks to me on so many levels. ‘Lies’ talks about the horrendous treatment that M.E. sufferers have faced over the years. From when we were told that we had to do graded exercise therapy, to when we were told that M.E. was ‘all in the head’ and the medics were going to rename it as Chronic Fatigue Syndrome (CFS).
‘My soul bleeds’ and ‘For My Love’ are harrowing love songs demonstrating the devastation this disease has caused to Kara’s life. M.E. sufferers are unable to live as they want and can’t continue the hobbies and relationships that we loved to do before the condition. Everything stops with severe M.E… but the big wide world continues… we just get left behind.
‘For I will hide in your heart, I reside in your skin, I will live every time that you breathe.’
The album fittingly finishes with ‘Remember Us’. It is the perfect end to a spectacular album, an astonishing achievement and it is a timeless piece of art that will live for eternity for severe M.E. sufferers.
The fact that Kara has managed to beat Taylor Swift in the Top Ten Download Album Chart is momentous. It always incredible to see the M.E. community come together because although we are often unseen by society, we are a powerful bunch. It is even more amazing to see that able bodied people are also listening to Kara’s music. It is educating everyone about our suffering and on behalf of my family and friends, I just want to say thank you to you, Kara, for being able to express how we have felt for many years.