Carer or Sharer

This is a personal account of how I have lived with chronic illness for over thirty years and how it has been used to change my life. A husband’s viewpoint.

My wife was a real carer. It was part of her make-up. She would have made a good nurse, but gave herself sacrificially to being a mother, wife and home-maker.

After about nine years of marriage we moved to the Cornish coast because of my work. To live by the sea was like a dream come true. We saw it as a new start. Within the first year however, things began to go wrong.

My wife was already experiencing pain in her feet and not long after arrival, she was diagnosed with chronic rheumatoid arthritis, a progressive and disabling autoimmune disease. This ‘sentence’ came as a shock for her and she was quickly admitted to a hospital in Bath for three weeks specialist treatment. Within days of returning home however, she had news of her mother’s deteriorating health and travelled up country to see her. Her mother had painfully struggled for years with rheumatoid arthritis and it was our plan for her to come and live with us, once we had settled in and prepared a room for her.  Unfortunately this wasn’t to be, as she passed away ten days later.

My upbringing hadn’t fitted me out to deal with chronic illness or suffering.  Indeed, any expression of emotion within the family was kept mainly under wraps, so my response to this unplanned, if not traumatic situation wasn’t surprising. What was happening left me feeling numb. In a way I was in denial. My way of coping with these sort of things, was to do something practical to try and hold things together and maintain the status quo.

That summer, we loaded up the car with the large frame tent and all the camping equipment, including my wife’s medical kit and set off for a much-needed camping holiday in France.  I will never forget the relief, arriving at the camp site after the long hot drive. The warmth and  refreshing scent of the acacia trees in full bloom and not another tent in sight!  All my cares and difficulties vanished at that moment.  It was so relaxing for us all, even my wife who was coming to terms with grief. The children could roam and play in complete safety and we had our meals outside alfresco style.  The escape was soon over however, when we returned home to reality.

As the rheumatoid activity increased, my wife became more physically limited and fatigued.  It was easy for me to leave in the morning and bury myself in my work, while my wife often spent the day lying down.  This was the side people didn’t see.  She found the pain, fatigue and physical limitations frightening and in her frustration there were frequent expressions of anger and despair. I found these outbursts hard to cope with and often regarded work as an escape. It was a long time before I realised that they were not really aimed at me personally, it was just that I was the closest.

I was once asked if I had ever thought of leaving. I can honestly say that was never ever on the agenda.  I loved my wife and was committed to our marriage.  On the other hand, I wanted to escape from the illness, I hated what it was doing. I found it increasingly painful to watch her, my loved one, in so much pain and distress.  I felt so horribly helpless and trapped. One night when it got so bad, I went down on to our beach in the dark and in desperation reached out to God from the depths of my being, imploring Him to help us and heal my wife.

Despite my wife’s  progressive disablement with R.A., we lived a very full family and community life. My wife especially joined in, or initiated, village activities. I continued to put everything into my work, which involved an hour and a half’s return drive, stopping on the way to do the weekly grocery shop. I also used to buy some of my wife’s clothes and became quite an expert in Marks and Spencer’s lingerie department. Fortunately, I was blessed with practical skills, as the home needed much repair and our garden had to be reclaimed from a steep gorse-covered field. Also, as ours was an ageing population, I often gave a helping hand, anything from clearing drains and decorating, to laying carpets.

The children attended the village primary school, set in a delightful clifftop location, with the playing field leading down to the beach.  We became involved with some of the parents and as time went by, I was increasingly pressed into service, to ferry our children and friends to their various activities.  When the sun shone it was always a tussle between the choice of working on the garden and house or going down to the beach.  The beach often won; we loved it down there. We had our favourite spot, where we could paddle in the rock pools at low tide and swim safely as the incoming tide covered the warm rocks.

My wife gave her all in the role of  wife and mother and being what she called a ‘home-maker’ – she had high standards.  She was also a good listener and it was quite usual for me to arrive home, to find the pile of ironing still untouched, as she had given several hours to someone in need. I found that hard to accept, as she was the one needing physical help, but apart from several notable exceptions, there was little of that.

Increasingly there were times I went off on my own, or with the children, for outdoor pursuits. My wife obviously found that very difficult.  I too found it painful, as I wanted us to enjoy the activities together, but these sort of feelings were pushed to the back of my mind.

Sometimes we were asked if it affected our children, having a mother with an illness, because they would hardly remember her when she was well.  Well one thing, she may have had a disability, but she did not act disabled and she has an adventurous spirit.  Yes, there were things that they missed out on, just as I did, but I believe that they were strengthened through these early lessons and have grown up with qualities that some other adults never have.  In the end of course, it is for them to say.

There is a thread going right through this story. Almost from the start, through our own need, God was drawing us to Himself and also into the Christian scene. Over the years we made new acquaintances and contacts. One of these new friends suggested my wife saw a Christian doctor, who had retired and lived with a companion in a large country house, an hour’s drive away.  When we arrived, they got straight to the point. They didn’t speak of medical matters, but about Jesus, gently but with authority. It seemed as if they could see right inside us.

The following day they took my wife to hear a visiting evangelist in the next county. I joined them in the evening after work and was riveted by the way he spoke so directly and simply.  There was a call for those to come forward for salvation and healing and the next thing I knew, was that my wife had obviously been touched in some remarkable way.  As we drove back that evening, we just knew that she had been healed. It was as if the car had wings, we were so overjoyed.

There was no doubting it was a miracle. We were over the moon and obviously wanted to talk about it. However as we tried to share our experience , we found locally, even amongst church people, that it was met with indifference or scepticism. Nevertheless, with her renewed strength, my wife became even more involved, wherever she saw a need. You could say she took on the village.

Unfortunately, after time, the symptoms slowly returned and that left us puzzled and acutely disappointed. No one seemed to have the answer and we felt on our own.

From what we had read in the Bible and from the many testimonies we’d heard, we were convinced that God still heals today and I wanted this for my wife! In our quest for understanding, we were led over the years along a path of Christian contacts.  We learned that healing includes not just physical, but emotional, mental and spiritual – they are all linked. Also how we can be healed of childhood traumas and past hurts, that can adversely affect our lives as adults.

We had times away where we experienced sensitive listening and ministry.  There were blind alleys, mistakes and mishandling too, but through all this I began to see my wife come into a new place. To put it in her words, “she had an illness, but the illness did not have her!” This became apparent and did not go unnoticed.

It slowly began to dawn on me that it wasn’t just my wife who needed healing. My work had become more challenging, with greater demands on my time, but desires and longings were emerging. I was getting in touch with long-buried feelings, that left me reaching out to God.

One issue for me was the feeling of loss. There was a lot to be thankful for, but we had been robbed of much of what a ‘normal’ couple can do. For example, we were invited to a colleague’s celebration barn dance. I had to go on my own and sat at the side chatting, but another colleague’s wife asked me to join in and wouldn’t take no for an answer.  What took me by surprise, was how agile and athletic she was, as we twirled around the floor. It just hit me, what I had missed out on. I could barely remember when my wife was like that. When I got home, I just sobbed and sobbed.

It was only after I had given time to face and feel the unresolved grief and even anger – some of which was rooted way back in the past –  and found healing, that I could look back and really appreciate all the treasures of the past years.

Another issue that I had to face, was the fact that I was not responsible for my wife. As her husband I have a responsibility, but I am not responsible for her, there is a difference.  I know it doesn’t sound logical, but in some way I felt it was all my fault and somehow I had failed. This had to be dealt with and then let her go the way that was right for her.

After successive company reorganisations, I was offered the opportunity of early retirement.  This was something I welcomed, as apart from giving me more time for home and marriage, it gave me the opportunity to explore what I felt God wanted me to do.  Because we had received so much, we wanted to give it back to God and became involved ourselves in ministry or what we called prayer counselling. We started together on these things, but my wife found it increasingly difficult as she was unable to keep up physically and took more of a back seat, not by choice but out of necessity. Over several years, my involvement grew. I found it all very fulfilling and really believed it was ‘what I was made for!’

The problem was that my workload was snowballing. I had spent hours and hours listening to others, but a voice inside me was pleading, “what about me?” I began to feel exhausted. There was an inner conflict between giving out to others and finding space for my own needs. It slowly dawned upon me that I could be heading for burnout. Something had to give!

After months of emotional turmoil and two bouts of persistent ‘flu, I was eventually diagnosed with Chronic Fatigue Syndrome (M.E.) which left me with depleted energy and strength and muscle pain. Bit by bit I had to let go of the things I could no longer do, including much of our Christian service. Also there would be no more walking in the hills and wild places, that I so much enjoyed. One hundred yards on the flat, with the wind behind me, was enough to start with.

This initial desolation left me reaching out to God for answers. He had my attention as never before. I also spent much time prayerfully working through the loss and associated grief. As part of my ongoing healing journey I began to find out what I really could do within the restriction and discover new ways of doing things that were less of a drain on energy. I also rediscovered hidden talents for writing and painting, which helped in the process. It was only much later, when looking back, I realised that God had done something solid inside me. In the transition from being performance-based, I had more of what I call a ‘sense of being’ cemented within me.  A beginning of that divine paradoxical state of having a God-given desire for more, but accepting ‘what is!’

Especially in the early days, when like me, she was most concerned about what was happening for me, my wife was most supportive and allowed me space to work things through. On the positive side, she welcomed the extra time we had together and the shared activities. It was only through my own experience of fatigue, that I started to understand firsthand, what it was like for my wife. Through illness I was changed from being a willing helper to a ‘sharer.’ In several ways, physically, we were in the same boat, except where one of us was weak the other was strong and vice versa. We compliment one another. So although we are two individuals trying to walk with God on parallel paths, we have been drawn closer together. Illness and disability could have had the reverse effect, separating us, but because there has been a third Person in our relationship we have been kept together despite our struggles.

In this shared experience we have known God’s provision and enabling us to do things we thought were impossible. In our weakness he has enabled us, often in amazing ways. The last two years have been particularly challenging. It’s been a bumpy ride, but we believe that the same God who has brought us through so far, will not disappoint us.

The Best is yet to come in our adventure.

For my wife’s viewpoint see“The Thirty Nine Steps”

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2 Comments

Filed under biography, Christian, disability, family, healing, health, health & wellness, illness, lifestyle, personal, relationships

2 responses to “Carer or Sharer

  1. Pingback: Carer or Sharer - 1 | jdTVu

  2. Beautiful, poignant post. Thank you for sharing.

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