Immediately after I did my Ice Bucket Challenge I jumped into a swimming pool. The water felt wonderfully warm; much more pleasant than it normally feels. This made me reflect upon the icy moments that accompany the ravages of a terminal disease, but also on the warmth in between the ice: the positive experiences – moments of real poignancy that you appreciate as you appreciate sunshine on a rainy day.
I have kept the focus principally on the adults in this story out of respect for our children’s privacy. But, suffice it to say that their welfare has to come first even though they cannot be insulated from painful circumstances. Every son or daughter hurts massively when losing a parent to a ghastly disease; but it is especially difficult when they are young and dependent but old enough to understand. I would be happy to discuss our experience privately with parents facing a similar situation. Just send a message in the Contact Me section and I’ll be in touch.
Clare, Jack, Ben and I were living in Kenya in 2006. In May of that year Clare twisted her ankle while walking in the Mount Kenya area. The ankle resolutely failed to heal. She was also becoming more and more easily tired from day to day exertions ("knackered and grotty" as she so eloquently put it). Nothing serious as far as I knew but unbeknownst to me Clare was becoming very concerned. We were on holiday in UK during the summer of 2006 when Clare stumbled several times for no apparent reason. After seeing a doctor it was pretty clear that there was cause for concern. Clare stayed in UK for tests while I returned to Kenya. In September the icy water dropped and Clare received the diagnosis of MND. Her life had been turned upside down.
Clare and I have always been optimists of the incorrigible variety. Our cups are half full, crises are opportunities, losing your job is a career break - you get the picture. We knew that Clare’s condition would deteriorate but we had hoped that the process would be slow. Those hopes were in vain and Clare’s light faded rapidly as autumn turned to winter.
Those months tested our optimism to breaking point. MND relentlessly and systematically robbed Clare of things that most of us take for granted – first her ability to walk, then to drive, then to write, then being able to stretch. Soon she was no longer able to hold a cup, or scratch an itch, or give somebody a hug, and eventually her voice left her. Every liberty lost was a mini death; a source of grief both in itself and for the fact that it presaged her inevitable and all too imminent death. And the grief flowed by the bucket load. But every single time the anger, despair and frustration from each liberty lost was transformed into acceptance – not fatalism, not resignation but acceptance of the situation in which she found herself. This allowed her to embrace life until the very end.
A few days before New Year Clare could no longer bear any weight on her legs. I bore the weight and I cracked. It was no longer OK. I couldn't put a positive spin on this anymore... But Clare could. “We’ll sort out more care, get a hoist to lift me in and out of bed, I’ll stay in the hospice for a day or two to give you a break and we’ll be fine and dandy” is the gist of what she said once those initial phases of grief had done run their course. And Clare was right; it was okay. She stayed in the hospice, not for a day or two but for five weeks - the final five weeks of her life. This period was to become one of our most precious times together.
For some time since the diagnosis Clare had been convinced that she was not going to live for much longer. I continued to hope that things would stabilise. I had planned to contact loved ones who did not yet know about Clare’s condition once she was on this plateau. As the New Year approached it was clear that I could no longer afford to wait. At this point I wrote a letter to far flung family and friends to break the news. I did not want people to hear about things only after Clare had died.
Even though it was hard to put the words on paper, I was so glad that I wrote that letter. Our loved ones responded with wonderful tributes to Clare, which I read to her as we shared her final weeks. In my opinion obituaries are wasted on the dead and in life we invariably forget to tell people how much we appreciate them. To be able to really know how much Clare was loved while she was alive was of massive comfort to both of us.
The letters, together with our long and tender conversations were very much part of the grieving process - letting go and surrendering to the inevitable fact that your time together on earth is coming to an end. This process actually began when Clare received the diagnosis. The fact that we had time and space to talk about the things that really matter in life - the love you share and the people you care about, as well as the day to day stuff like paying the mortgage or ordering name tags for the boy’s PE kits - helped me so much as I came to terms with life after Clare. I got a sense of how precious this time was through my communication with friends and relatives who reflected on the loved ones they had lost. Several people expressed their sadness about having their nearest and dearest snatched away without warning and not having the chance to talk to them properly. Others spoke of the gradual loss that comes with a degenerative mental disease. MND does many things but it does not take you suddenly, and it does not rob you of your mind. At least it gives you some time and you can communicate authentically to the end. It gives you permission to say goodbye.
Shortly after my update to family and friends Clare wrote her final letter dictated to me through tears and smiles. She spoke of her appreciation of Weston Hospicecare and everything they did to make things as good as possible in the circumstances, the challenges faced by the family in coming to terms with her death and her fear of the unknown.
I continued to write mainly because those who had sent their wishes, and (as I was to find out later) those who could not bring themselves to write, wanted to share Clare’s journey; and to help us feel a sense of connection. But I also wrote for myself, as a way of processing – to help me to crystallise my feelings and lighten the weight I felt whenever I kept things bottled up inside.
The hospice environment, created by its amazing staff, gave us the time and space to explore the emotional peaks and troughs and seemed to provide Clare with a new lease of life. Visitors poured in and for a while there was a party atmosphere in Room Number 3. It almost felt like Clare was in the hospice under false pretences, and I began to dream of the plateau again. But the disease never relented and soon Clare’s spirit could not overcome the dictates of her body.
In those final weeks and months Clare and I discussed pretty much everything of relevance to our lives, and the imminent reality of her passing, even to the point of planning the funeral to the last detail. I hope this doesn't sound morbid or paradoxical but thinking about the music, the readings and flowers was actually an incredibly moving and life-affirming process. And the fact that we had planned it together helped to give me the energy to organise the process in the certainty that I was helping to implement Clare's wishes. A small recompense I know, but helpful nonetheless.
In the days that followed the funeral, with our friends and family scattered to the four winds, it was just me, Jack and Ben. The boys really helped me; I had a focus, a raison d'être, a responsibility that was bigger than me. I had very little time to wallow in the proverbial slough of despond. As all fellow parents know, there are things that just have to be done when you have small, or even not so small, dependent children. There are the manifold tasks that serve to stave off entropy and then all the other stuff that goes under the heading of enhanced quality of life. These imperatives provided me with a direction that may not have been there had I been a one-man-band; which is the case for so many of those who lose their partners.
But after the entropy has been postponed for another day, tummies have been filled and fun stuff has been done, there is a huge gap in one’s life that can be labelled “partner”, “soul mate”, “head for one’s shoulder”, etc. Clare was well aware that I would need that special somebody in my life after she was gone and in her final weeks she was on a mission to sort out my future emotional wellbeing! Her matchmaking efforts and my resistance to them made for much hilarity in the hospice in those surreal final days!! But Clare was right, I would need to find love again and I am so grateful that she gave me her blessing.
I cannot imagine life without the Internet but I had never envisaged the pivotal role that it would play in contributing to my future happiness. As a single father with two dependent children, my freedom to seek out that special person would have been extremely limited in those bygone days. But with the plethora of internet dating agencies out there, offered at least the possibility of finding that somebody, even if the search was likely to take some time. So I took the plunge and steeled myself for what I envisaged would be a long and rocky road ahead. Incredibly, within only three weeks of subscribing to a dating agency I met Julie, and found myself falling head over heels in love with this wonderful woman … and meanwhile she was falling in love with me!!! I had heard a lot of horror stories about internet dating and I am sure that they are not exaggerated. Clearly Julie and I are among the lucky ones. I can only put this down to the fact that somebody up there likes us!
Although Julie and I were sure that we wanted to be together we both had dependent children – Julie’s children, John and Isobel were 10 and 6 respectively when we met while Jack was nearly 11 and Ben was now 8. So we had to do our best to ensure the children's welfare was best served in the process of fusing two families. This has not been without its challenges, and for reasons previously stated, I don’t want to go into too many details. Suffice it to say it was critically important that Julie shared such a strong love and a burning desire to make things work for everybody. Over the years our group of six has become as solid a family unit as anybody could wish for despite our different backgrounds.
On Friday 13th April 2012 Julie and I got married in Glastonbury, the place where we met. All sides of the family were there including Clare’s folks and Julie’s ex-husband. I am not pretending that everything has been plain sailing but Clare’s determination that I should rebuild my life and the support of our families and friends has been a massive help… thank you!
Without the help of the Motor Neurone Disease Association and Weston Hospicecare our lives would have been so much more difficult. Both organisations rely on volunteers and donations so anything you can spare would be gratefully received.
Clare’s mother Sue-Jane has set up the Clare Viva Towner Mauremootoo Tribute Fund. All money donated goes to the Motor Neurone Disease Association.