This post has been brewing in my head for a while now. It’s taken time to get into shape, and some of the ideas have developed while doing so. I’ve written before about the restrictions in activity that come with a chronic illness like ME, but this post explores the impact this has on our sense of identity and value. It’s also a bit longer than most of my other posts – sorry about that.
One of the main impacts of ME and other chronic debilitating illnesses on their sufferers is that we are restricted in what we are able to do. The more severe the disease in anybody (or at any time), the greater the restrictions. It means we can no longer do what we used to do, or what we want to do, or what other people expect us to do; and this can have an impact on who we see ourselves to be.
These things might be for ourselves. In the most severe cases, this will even include the basic care of our lives: washing and feeding, needing help from others. For others, it may be the things we enjoy doing – walking, driving a car, going out with friends, when we have to make a huge effort to do something and be ready for the inevitable payback. Or it may mean limiting the time we spend doing things like reading, watching TV, listening to music, when we are sensitive to noise and light, or when our brains don’t let us concentrate.
Other things we are restricted in doing are for other people, especially when we have young children. Playing energetic games with them is likely to be out, or perhaps we can only last a few minutes; on bad days getting them ready for school and taking them there may simply be not possible. At times like these we may feel guilty, or even a failure as a parent or grandparent; and although we know deep down that that’s not really the case, and although we get lots of encouragement from others, and although we can concentrate on the things we can do for our children, this still hits us hard.
Or it might be work. Many people have given up work altogether, or can only work part time, or can juist about manage to work but at the expense of everything else. Work is also something that gives us a sense of identity, hopefully it’s something that we enjoy doing, and brings in money to support us and our families: so not being able to do this is a major blow.
Called to serve
And then there are lots of other activities that people do in their spare time: voluntary work in many different forms, helping out in the community, running sports clubs, being leaders of uniformed organisations, raising money for good causes, and many other things. Again these are things we might enjoy, and also help to shape our identity; but they also give us a sense of value, of self-worth. So what happens to this when we can no longer serve?
For many, this idea of finding worth through service is part of a religious faith (though of course it doesn’t have to be). As a Christian, I am reminded several times in the Bible of the call to service, to do whatever I can; and yet this is limited. I hear and read calls for volunteers and think, “I could do that” – and then reality kicks in and I know that I can’t.
I am currently part of a Twitter Bible reading group, reading Luke, John, and Acts from the New Testament, a chapter a day, and a couple of passages have emphasised this call. In Luke chapter 12, verse 48, Jesus says “From everyone to whom much has been given, much will be required” (New Revised Standard Version). I am conscious that I have abilities that have been used and appreciated in the past, gifts I believe have been given to me, which now lie dormant; that I am not giving in proportion to my gifts.
Or take the parable of the talents, in Luke chapter 19; those who use their gifts (in this case, money) to grow are praised, while the one who hides his away is criticised and punished. The New Living Translation puts Jesus’ comment quite strongly: “But from those who do nothing, even what little they have will be taken away.” (verse 26) – do nithing, and perhaps not just in relation to financial investment. Those who do nothing with what they have are held up as bad examples, not to be followed.
Or outside the Bible, there is the prayer of St. Ignatius of Loyola: “Teach us, good Lord, to serve you as you deserve, to give and not to count the cost … to toil and not to seek for rest …”. How can we spoonies, who have to carefuly manage our little packets of energy, live up to this?
Do what you can
But fortunately there are also other views, and one of my challenges is to listen to these rather than keep pushing myself. At some point in my illness, possibly when I had to give up practically everything outside work in an attempt to keep my job, I was reminded of the line “They also serve who only stand and wait”.
At the time I didn’t know where this came from, so I looked it up and found John Milton’s sonnet “On his blindness” (you can read the whole poem here). Interestingly, Milton also refers to the parable of the talents in this poem, and his fears of what might happen if he were no longer using his own talent.
So what does this mean when we feel called to serve?
Earlier in the #Luke2Acts series I looked at the staory of the widow’s mite (Luke 21:1-4). I have usually read this as a call to sacrificial living and giving; the fact that she gave “all that she had to live on” is supremely challenging. The contrast between her gift and those of rich worshippers is not on absolute but on relative terms: she pushed herself until there was nothing left.
But another way of looking at it is that her gift is valued in proportion to her means: she gave a little because she only had a little to give. This is also echoed in other parts of the Bible: for example, in 2 Corinthians 8:12 Paul (who is encouraging people to contribute to an aid programme) says “For if the eagerness is there, the gift is acceptable according to what one has – not according to what one does not have.”
So one way of dealing with a call to service during chronic illness, and the feelings of guilt and worthlessness that come with not being able to respond as we would like, is to focus on the things we can do, and be grateful for whatever opportunities there are.
But there’s more. There are times when we feel we can do nothing – not just a little bit, but nothing at all. When the pain becomes harder to bear, when we have to lie down to stop the dizziness from making us faint, when even having a shower or getting dressed is too great an effort, when the brain fog leaves us completely confused and unable to think, when we cannot concentrate on writing or reading or talking to others… The severer the illness, the more this happens, and even for me there are times when I feel this way.
Can we really serve by doing nothing? By just waiting?
I’ve touched on this a couple of times in my Twitter contributions to #Luke2Acts, raising it in the form of a question; and often get the response “at least you can pray”. This is true – but again, only some of the time. Prayer is still ‘doing’, still takes some effort, and sometimes the emotional energy is simply not there.
I’m not alone in this. One of the best books from a Christian perspective on what it’s like to have M.E. is “A Year Lost and Found” by Michael Mayne. He also writes of times when he foundf it difficult to pray, and of his need to be prayed for. He refers to another excellent book, “The Stature of Waiting” by W. H. Vanstone, which explores this general issue in more depth.
One of Vanstone’s points, echoed by Mayne, is that we are still human, still having identity, worth, and value, when we are passive rather than active; when we need to be prayed for rather than pray; when we are served rather than serving. It’s not easy for me to understand an accept this, but I think that it reaches the deep meaning of Milton’s line:
“They also serve who only stand and wait”.