Heather Bellamy spoke with Emily Ackerman about ME, coping with life-changing illness, writing a book and being healed.

Emily Ackerman

Some illnesses begin with a bang; whipped off to hospital or flattened into bed. Other conditions creep in until life skills are suddenly out of date and work, socialising and hobbies are out of reach. It's a new and scary world. When Emily Ackerman fell ill, she felt like God had chopped her off at the ankles. Having trained and worked as a doctor before illness put an end to her professional career, Emily has now released her second book, 'The Amazing Technicolour Pyjama Therapy: and Other Ways to Fight Back Against Life-changing Illness'. To find out all about it Heather Bellamy spoke with Emily.

Heather: So can we start by just finding out, what was your illness?

Emily: I fell ill with ME, which is very little understood, even after all these years of people having it. It affected every cell in my body, so it really affected every aspect of my life. I had digestive problems, I had neurological problems, problems with balance, speech, memory and for the last 12 years of a 23 year-long illness I was using a wheelchair and mostly resting in bed. It was a substantial disabling illness.

Heather: So how did that first come about?

Emily: There was an epidemic of flu in my locality and approximately 30% of the population of Edinburgh fell ill with this particular flu. This was in 1990. My young family and I all went down with it and we lay in a pile in the double bed coughing. Then everybody else got better and I just didn't. It was a bit like having flu. For two years I was running fevers and all kinds of things. I was very poorly. We had tiny children and it was really a crisis. After that phase kind of burnt out a bit, I was left extremely fatigued and flattened into bed. When my youngest child started school I was able to rest more effectively and I started to improve just a little as time went by, but then because ME is a fluctuating illness, it can go down as well as up and that's what happened to me. As the years went by I felt myself increasingly disabled and more symptomatic than I had been to start with, which was very difficult to deal with.

Heather: So how did you handle all those life changes?

Emily: Badly. You have to start by grieving your losses and it is very difficult to grieve your losses when you don't know what they are. I was faced with an open ended illness that nobody understood; we didn't really know where we were going. I felt that God had cut me off at the ankles for a very long time. I felt that God had abandoned me and these are not thoughts that we are encouraged to voice at church, so really it all went underground. I just shut my mouth and tried to get on with it, but it was very difficult. I don't think there is an easy way to handle a day when you are substantially limited, when your children are not being sufficiently mothered and when you feel angry with God.

Heather: Did you lose your confidence?

Emily: Absolutely. I think in a sense you have to learn to re-establish your confidence on a different basis. I had to learn the hard way that what I do is not who I am. Over time I found out that people did love me even though I was not running around after them anymore. That was very threatening and very difficult to do. We don't realise how much we rely on our familiar roles; on our hobbies, jobs, titles, salaries; or perhaps ministries, or activities within church, or voluntary organisations. We don't realise how much we're resting on that foundation until it is taken away. We may think that we are resting on Jesus, but actually, we have got one foot on Jesus and one foot on a load of other stuff. I found myself standing on one leg suddenly and yes it was a very big adjustment.

Heather: So over the years what would you say are the main lessons you have learned through your illness?

Emily: Ooh that's a good question. I hadn't really thought about it that way. I feel as if I need to go and sit behind a bush and think about it, that's a really good question. What have I learned? I have learned that God is for us and not against us. That whatever comes into my life or anybody else's life, it does not take God by surprise. He was preparing me to handle the stresses of this illness and he is preparing us all for whichever challenges are coming around the corner. I also learned that God does not intend for us to face life's challenges on our own; he intends for us to draw close to him and take hold of the provisions that he is providing for us in his word and as we pray and the people around us who love us and care for us. If we say no, I am angry with God and it's all his fault; I am not going to reach out to him for his provision, then we still have to face all the challenges, but we are hungry and thirsty and tired as well and really that doesn't work at all. In my experience, the only way to make it work is to lay hold of God for all you are worth and to draw down from him the good things that he has to give us.

Heather: So is life still of value when you are that ill.

Emily: Absolutely. We have to learn in a Western culture, which is completely based on striving and roles and competition and how good you look that we, the sick, have got to learn to live without all of that and it is just a huge challenge. Terry Waite who was held in solitary confinement as a hostage in Lebanon over years, he said that with solitary confinement, you have to dig deeper every day; you dig deeper than you even knew you could dig. That was my experience of life-changing illness. You have to dig deeper, deeper and deeper; deeper than perhaps some people ever dig. I have never been anybody else, but I certainly had to dig very deep for personal resources to get me through that long challenging life-season.

Heather: You were saying how you had to let go of where your identity was wrapped up in work and the doing. Equally, it can be a battle when you are ill that your identity doesn't become your illness; so how did you manage to keep your identity separate from your illness, so you aren't your illness, but you are bigger than your illness?