The 1001 things

Chronic illness, grief, and loss

One night late last year I lay in bed watching a TV documentary about a couple whose child had died a few hours after birth.

I watched as the grieving parents spoke about the whirlpool of emotions surrounding them after their infant daughter’s death.  They seemed swept off their feet; floundering in feelings of despair, anger, and sadness and love.

I cried not only with sadness but also, unexpectedly, with an overwhelming feeling of relief. Suddenly I could give a name to the emotions that had held me in their clutches for the past five years. I realised that I was in mourning. I saw with clarity that someone I’d loved and cherished had gone away and would probably never come back. I hadn’t lost a child, but I had lost ‘me’ – or the person I thought was ‘me’ - to a chronic illness.

People who have a chronic illness are often struggling with feelings of grief, but that this aspect of illness is rarely understood or acknowledged by either the person themselves, or by the people around them. Watching this documentary I realised that I was in mourning for myself; my life. I wasn’t just grieving the loss of good health – I was grieving the loss of a thousand and one things that good health enabled me to do.

I was studying at a University in America’s Mid-West when I first became ill with Chronic Fatigue Syndrome. At the time I railed angrily against the loss of an opportunity to travel to South America and to continue my studies. Now, as I watch my friends getting married, I wonder if I’ll ever have the energy required to meet my own needs, let alone those of a partner or child. Grieving the loss of the life that I watch my friends leading is painful and exhausting.  I struggle with these feelings everyday.

People with long-term illnesses can struggle for years, as I did, with anger and depression without recognising that what they are going through is a long grieving period.  Had I realised, earlier on, that the bitterness and despair I was feeling was part of a very normal bereavement process I think I would have been easier on myself.  I wouldn’t have thought I was a terrible person when I felt waves of envy and bitterness watching a woman jogging along the footpath in front of my house. I wouldn’t have told myself I was small-minded when I heard about a friend’s upcoming trip to the USA and felt jealousy towards her instead of good will.

I regret that I’ve never been able to say a sad but firm ‘goodbye’ to the life that was mine before I got CFS. Rather than becoming less intense it seems almost as if my grief is intensifying as the years of illness go by. The sadness I feel is strapped to my back like an old, threadbare, canvas backpack.  It’s a bag that I lug along everywhere I go. My bag of grief is so familiar to me that it almost feels comfy; its shape softened over time to mould with the contours of my back. I know that as long as I have this illness I can never completely let this bag go.  Part of me will always be in grief for the way things were and the way they could be.

I think it was Elizabeth Kublar-Ross who came up with the theory of the stages of grief: first denial, then anger, despair, depression, bargaining, and finally, acceptance.  It sounds great in theory – but does it allow for the messiness and confusion of real life?  Will the young couple I saw on television ever completely ‘move through’ the grief they feel over their daughter’s death?

Somehow I doubt it. Kublar-Ross’ stages are too neat and tidy and I doubt whether anyone really ‘gets over’ profound loss. There is no expectation that we will ‘get over’ the many joyous and wonderful things that happen to us in our life. You never hear anyone say ‘I met the love of my life twenty years ago. It was great and I’ve never really recovered from it!’ Happy events change us and we carry this change with us.   Why, therefore, is there an expectation that it’s possible to ‘get over’ terribly sad events or situations?  They also change us, and we carry this change with us – for better or worse.

I roller coaster through all of Kublar-Ross’s stages of grief in the space of one day.  For breakfast I have a dose of anger with my cornflakes, by lunchtime I’ve trudged through depression and graduated smugly to acceptance then by dinner I’m back down in despair. Every day I go through the same emotions with the monotonous regularity of a train that travels the same route, pulling into the same stations, day after day, year after year.

For years I saw my inability to accept my life as it is now as a character flaw; a shameful weakness of spirit. One day, suddenly realising that I would never completely accept being sick, I paradoxically reached my only true moment of acceptance. I accepted non-acceptance!

I realised that some days I would lie on the couch in a state of saint-like serenity, accepting whatever life had to throw at me.  On other days I would be angry and bitter, hurling pillows across the room in frustration.  I acknowledged that, as long as I was sick, I would seesaw between these two states.

It’s my experience that grief – and its accompanying emotions of anger, sadness, denial and despair – comes in waves.  The trick is to ride the waves.  If I’m going through a day of sadness and self-pity I try to keep in mind that it won’t always feel like this. I try to be gentle with these feelings, to ride them like a long, smooth wave- knowing that this wave will eventually subside and another one will come to take its place.  It’s not easy.  A few weeks ago I wrote in my journal,

'Was just listening to a Bach aria called ‘Ich habe genug.’ In English this translates literally to  ‘I’ve had enough’.  I thought to myself, ‘yeah...you and me both!'

Of course, there are personal gains from my struggle with CFS.  I’m grateful for them but regret they had to come at such a huge price.  The recognition that I cannot, by the sheer force of my will power and desire have my health back has ripped my heart open and exposed it to a new reality.  My connection to life is growing richer and deeper.

I can relate to strangers on a television documentary crying over the death of their baby girl.  I can empathize with my ninety-five year old grandfather’s soft bewilderment at losing his ability to read. Watching the SBS news I see worn-out victims of war and their pain is real to me.  It’s impossible now to turn away from the knowledge that terrible suffering exists in this world. I have found God in the acknowledgment of pain I cannot fix.

My experience of loss has allowed me to peer, tentatively, over the edge of an abyss. It’s demanded that I move beyond my comfort zone to sit in a space where I am keenly aware of my fragility; a space where I recognise that it is only the whisper of a breath and soft thud of a heart beat that allows me to be here.

It is not easy to live in this space; I have little control of the feelings that rage within me and I often feel like a frustrated and impotent witness to my life. I don’t know why I’m experiencing the ill health that has come my way. It doesn’t seem fair.

The only thing I can do is to be here.  To recognise that the island of loss and the land of birth aren’t on different maps. To appreciate the thousand tiny births and deaths in every day and recognise, as Kahil Gibran reminds me, that joy and sorrow are entwined:

‘Some of you say, ‘Joy is greater than sorrow,’ and

others say, ‘Nay, sorrow is the greater.’

But I say unto you, they are inseparable.

Together they come, and when one sits alone with

you at your board, remember that the other is asleep

upon your bed’.

Kalil Gibran – The Prophet

Note:  This piece was written about eight years ago; I thought I'd resurrect it for this blog. It's not terribly cheerful, but I hope it might be useful to someone out there going through the same emotions.