God, music and ME
Christian singer-songwriter Helen Jayne McKellar’s career was cruelly ended when she developed ME/CFS back in the nineties. But now she’s back with a new mini-album and a heart warming story of hope and faith. She talks to Sarah Bloodworth
Imagine feeling jetlagged and hungover. You’re restless and desperate to sleep but can’t. You have intense pain in your muscles and joints. Worse still, you feel flu-like, nauseous and you can’t tolerate light or sound. You have brain fog. You can’t think or speak, and even though you sweat, your feet are like ice. Just getting to the toilet is like trudging through treacle on a rubber floor. Scared and helpless, you fear God has forsaken you.
This is the daily reality for Christian singer-songwriter, Helen Jayne McKellar, 41, who has endured these symptoms for nearly 15 years. But Helen isn’t jetlagged, hungover or suffering from flu. Helen has a severely debilitating illness that affects mainly the nervous and immune systems. It is called Myalgic Encephalopathy (ME), also commonly known as Chronic Fatigue Syndrome (CFS), which no doctor can explain and there is no cure. And, sadly for Helen, this awful condition struck her down right in the midst of a flourishing music career.
“My dream was to secure a deal with a record label and make a professional album of self-penned songs. After six years of writing, recording, performing at Christian gigs and on TV and radio, an A&R man saw me perform in London. He signed me to Word Records and sent me to Nashville, USA, to record my debut album Safe.”
Tragically, the dream was short-lived: “After a stressful recording process lasting weeks, I went on holiday to Zimbabwe and, as advised, took anti-malaria drugs. Immediately I fell ill with terrible diarrhoea, vomiting and weight loss, so we flew home early. At home, I collapsed, became bed-bound and had to be carried to the toilet. I wore a dressing gown and hat in bed as I was freezing cold. I felt like I was dying.”
Helen’s doctor claimed it was a holiday bug, diagnosed depression and prescribed anti-depressants. This was confusing and distressing to Helen as, far from being depressed, she desperately wanted to return to her music. Eventually, Helen’s husband Doug suggested she might have ME/CFS. But it took years before Helen got her diagnosis.
“The diagnosis was a relief, but no-one could tell me how to get better. The only help I received was the loving care from family who saw the devastation first-hand. Friends just didn't understand. I felt totally isolated and was housebound. And, of course, I had to give up my record contract which had another two albums planned.”
Besides the terrible physical symptoms, what makes ME/CFS such a cruel illness is that, to the untrained eye, sufferers like Helen can look the image of health.
“ME/CFS is an invisible disability. I dread the words ‘you look well’ and ‘how are you?’. These days I usually say ‘Oh, I’m fine’ because most people won’t understand and don’t really want to hear.
“The truth is my symptoms are fluctuating and unpredictable. I may get to the shops and then people think I’m better. In reality, I suffer in bed for the next few days. ME/CFS is no ordinary tiredness – it’s chronic, as the name says – and it never leaves you.
“Also, sometimes during conversation, suddenly I can’t concentrate or speak. It’s embarrassing and my confidence gets shattered. It is such a difficult illness to manage.”
Sadly, although the World Health Organisation classes ME/CFS as a neurological condition, some UK doctors deny it exists. This means many sufferers are not getting the proper advice they so desperately need. A sufferer may be labelled as depressed or work-shy. Ironically, it is often the hard-working perfectionist who gets ME/CFS. The latest US research that a retro-virus may be responsible, together with genetic studies give a ray of hope to sufferers worldwide.
“Depression does not cause ME/CFS. I certainly wasn’t depressed when I first got it - I was busy building up my music career. But now, like any chronic illness, I get low moods sometimes because I can’t do what I want to do in life.
“I can no longer gig which is something I have grieved for. Seeing a massive crowd sing along to my songs was an amazing feeling - knowing God was using my music to help others was a real joy. It is not something you choose to give up. This illness has left me saddened and, at times, despairing.”
It is no surprise that the effect of ME/CFS on Helen has been devastating, and her faith in God tested. Brought up singing in church in Wales, Helen was aware of God’s love and became a Christian at 11. There have been no singing lessons. “Just a gift from God”. But Helen is honest about how her illness has put a strain on her relationship with God.
“It’s a struggle and sometimes I can’t pray. My faith has been tested to the limit, but I don’t stop trusting God to take care of me.”
On reflection, Helen believes God allowed this illness so she can learn valuable lessons. “Perhaps I was striving for the wrong things. Health is the greatest gift. I now understand long-term suffering and I’ve become more compassionate to those in genuine need. God has helped me to accept my loss and move on.”
Despite the ongoing struggle, it is ultimately God and the love from family and close friends that helps Helen to cope.
“God sees life in eternal terms. Maybe one day I’ll understand why he allows suffering to happen. But now I feel his presence in everyday, simple things – cuddling my dog or watching the birds in my garden. He’s everywhere and his love is available always.
“Also, my husband, Doug, is my human rock. The love we have for each other is sacrificial. I pray that God will allow me good health in future to be an amazing wife in return!”
With Doug’s loving support and collaboration, 2009 saw the release of Helen’s new mini-album It’s Not Too Late. It is a thought-provoking collection of songs of diverse musical styles, from edgy rock/pop to simple acoustic ballads. After a terrible decade, it marks a milestone for Helen - a success for human faith and spirit over grief and adversity.
“I feel close to God when I am writing and believe these songs were sent to help others. I am thankful to God for his inspiration and guidance. Being unsigned meant I was in control and could take two years to make a record I truly believed in. So it’s been excellent therapy and cathartic, and I feel this album is more mature. The whole process has been rewarding and fulfilling.”
Her album of six beautifully crafted, self-penned songs is, Helen says, “a deep, thought-provoking and heartfelt call to lapsed Christians to return to God.
“I wanted to inspire people who are experiencing difficulties and encourage them in their journey with God. I hope the songs reassure people that it is okay to be real, honest and admit to struggling. We do not have to be superhuman to be Christians. God will never leave us.
“I pray that when people listen to my music, they will take away hope, comfort, peace and permission to be human. I am hopeful that a diagnostic procedure and cure for ME/CFS will be found. My goal for next year is to get healthy and help others as much as I can.
“The positive feedback and thanks I receive for my music makes it all worthwhile. I feel privileged that the music I’ve made has connected me with so many lovely people worldwide.”
* It’s Not Too Late is available to buy now from the website www.helenjayne.com
Take it further ( set as box)
For more information on ME/CFS, contact Action for ME (0845-1232380, www.afme.org.uk) or The ME Association (01280-818968, www.meassociation.org.uk).