What does this have to do with CFS/ME? Firstly, the story validates my sense of the wrongness of being sick. My illness is an outrage not just against me but against all creation and even against God. This is not the way God intended the world to be, and my illness is one example amongst many of the brokenness of the world. Secondly, it gives me perspective. Other people suffer illness, deprivation, abusive relationships etc., and these, too, are part of the brokenness of the world. My situation is different from theirs, but to suffer is part of our common humanity. Moreover, I know that it's not up to me to conquer my illness. So many people feel a terrible burden to resolve their situation themselves, and fight against their inability to do so. I don't have to fight that fight. I know that one day He will overcome not just my illness but all the brokenness that everyone suffers from and make the world perfect again. Most of all, in the interim my life is not on hold – He will walk with me in my illness and give me a life worth living.
In this article I would like to tell you about how I experience God walking with me in my illness. I hope that this will give you hope that you, too, can have a rich and deep life in the situation in which you live.
Time to reflect and choose how to live
CFS/ME has given me one enormous gift: I have left the treadmill. Unlike almost everyone else, I am not frantically busy with no time to think and be. In addition, I am no longer exposed to either advertising or peer pressure. It's a bit like being a nun - cloistered away from the 'real' world. I have the freedom to choose my own life. Each day I only get out of bed three times, and I have learnt to use only two of those times to do 'active' things (showering, craft work, bits and pieces I do for the household etc.). This leaves one period for reflection. Being restricted to only two activities per day means that I choose them carefully, and probably spend more time doing what I really want to do than most able-bodied people.
Like a nun, however, this life also forces me to face up to who I am. When I try and do too much while I'm up and about, my health deteriorates rapidly – so it is essential for me to take time every day to just sit and think. On better days I work through issues, take stock of myself, feel my emotions and bring all of this to God in prayer. And God loves me, shows me myself, brings to light things I need to put right, and forgives me... Or I just listen to the birds and enjoy the sun with a good cup of tea.
In these times, one thing comes up again and again. God showing me that I am overdoing things because I fear that if I don't hold the world together it will fall apart. Again and again He needs to tell me that holding the world together is His responsibility! I need to trust Him that He will do just that - and let him bring me peace even though the house is a mess; I haven't sorted out a present for a close friend's birthday; there's no easy food in the kitchen; etc. Often, He then resolves the situation, shows me how it isn't the disaster I thought it was, or gives me the grace to accept help.
To remind myself to trust God in this way I also keep one day a week where I do no 'constructive' activities at all – both to give myself a good rest and to acknowledge that I don't exist just to get stuff done.
Depending on God and His faithfulness
Throughout this journey with CFS/ME I have been repeatedly surprised by how tenderly God has taken care of me. He hasn't made me well, but He's made the situation not just copeable but richly liveable. The first really big example of this actually came a full year before I got sick when, in February 2002, I had a strong sense that God was saying that one day I would marry Martin. This was odd. Martin was one of my brother's best friends, but he and I had never been close. Moreover, I was living in Switzerland and he was living in Canada, so how could we even get to know each other better! So I tucked that thought away, figuring that if I had heard right then God would make it happen. Over the following months we emailed each other frequently and then, when I moved to the US later that year, visited each other a couple of times and started going out. We saw each other only twice before I became ill with what turned out to be CFS/ME. The third time we got together, in May 2003, he asked me to marry him. At that stage my body was falling apart and every few days I noticed something new I could no longer do, plus my head was fuzzy and I couldn't think straight. It was a terrifying time and I was in no fit state to make such a major decision. But that wasn't a problem - I didn't need to. More than a year ago God had told me that this was what He wanted. There was no need for me to figure out if it was wise - a much cleverer head than mine had already done that. So I simply said yes. I am still enormously grateful to God for His graciousness in making His plan so clear to me when my head was still functional (and for doing so long before I was emotionally involved with Martin, so I could trust that it really was God I was hearing and not my hormones!).
Because of experiences like these, I know that I can trust God to provide for what I need. Unlike many people with CFS/ME, I don't currently have any financial worries: my husband has a job that pays more than enough for our needs. However, there are no guarantees that this will continue into the future – he could lose this job, become ill himself or even die, and we would become dependent on the welfare system. Despite this, we have decided not to save up all our excess income 'for a rainy day' but to trust that God would continue providing if the situation changed. We have figured out how much money we need to meet our daily needs, have simple luxuries and provide for certain contingencies, and whatever remains we give away. We view our possessions the same way, and from time to time God confirms that this is what He wants. For example, we recently gave away some valuable books that we weren't using to a library in the developing world that needed them. The same day we gave them away we were contacted by someone from Canada wanting to know how to return to us a book we really wanted that my husband had lent him five years ago! We gave away what we didn't need and received what we really wanted in return. However, despite such confirmations that God approves of this I still do find that I have to give excess money away relatively quickly after it comes in, as I am by nature cautious and am always tempted to hang onto it!
Responding to God
I come from a Protestant tradition where sober living, hard work, self deprivation and serving the marginalised are highly valued. From my bed, I can do very few of these things, and I struggle with the sense that that must mean I am of no value to God. From time to time, though, I remember an illustration from a church camp I attended when I lived in Switzerland. Jakob built a wall out of duplo blocks, each of which had the name of someone in the church written on it. As he built it, he talked about how each block supported those above it and was in turn supported by those below. He then asked about the top tier of blocks - who were they and what did they support? They were the people who simply 'were' - they couldn't support anyone, they could only be carried themselves - but were never the less a part of the wall. He was thinking in particular of the people in the old people's home attached to our church, many of whom not only had bodies that barely worked but who also had advanced Alzeihmers and couldn't really talk or even think straight. Yet they were still part of the wall, part of God's family and the Christian community. When I am too weak to do anything at all (and sometimes I am too weak to even hold a spoon to feed myself) I sometimes think of that. Just being, I am still part of God's family.
When I am feeling better, I do do a little more. I am so grateful for all that God has given me, and I am keen to spread that joy around. I love the beauty of this world, and I strive to bring it into my home. I enjoy sewing, and when I sew practical things for the house I try to make them beautiful as well. We have embroidered oven mitts, an appliqued peg apron, and so on. I also want to make our house a place where the love that I have experienced from God flows on to everyone who enters our house. So we've planted flowers by our front door to make it look welcoming and have people over as often as my health will allow. Unfortunately, that's not very often (I have good friends I don't see from one year's end to the next), but I try to let them know I haven't forgotten them by an occasional email, phone call or birthday card.
Finally, because God values all people equally, as His followers we try to do the same. I often remember that, if I lived in the developing world, my CFS/ME would likely be fatal, and I do my small best to even up the resource imbalance that makes that so. We live relatively simply, so we don't use up much more than our fair share of the world's resources, and we buy fair trade groceries whereever possible so that we don't force the poor of the developing world to subsidise our lifestyle. There are some resources that I simply have to use more than my fair share of because of my illness. I can't prepare food without using electricity for labour-saving appliances, and I can't leave the house without using petrol for transport on short trips that most people could walk or bike. So we try to be sensible about this, but every so often check our behaviour to see if there are places where we could live as well with less. On the other hand, because I'm so restricted by CFS/ME I don't have worries about work or other obligations to fill my mind, so I have time to gradually think these things through and find good ways to live.
I have tried here to show you how I understand my illness in the light of my faith, how I have experienced God's support since I became ill and how I have been able to respond to that in gratitude even though my capacity for 'doing' is very small. These are my personal experiences and illustrate my understanding of life. Your situation and understandings may be quite different from mine but I pray that as you go through your life with this illness you, too, will find contentment and will know meaning and love in your life.
Heather
August 2007