Some people have asked about the connection between being drenched by a bucket of icy water and Motor Neurone Disease (a group of degenerative diseases of which the most common is ALS).  I'm not exactly sure but I guess first hearing the news that you or a loved one has an incurable disease is a bit like being drenched in ice water, though of course many many times worse. And there are a lot more ice bucket moments along the one-way street into which you have been ushered.

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.  

My former wife Clare was diagnosed with MND in September 2006. Our children, Jack and Ben, were 10 and 7 years old at the time of her diagnosis. She passed away on 19th February 2007 a few months before what would have been her 40th birthday. In her dying days Clare helped to establish the foundations for my future happiness and me, Jack and Ben are now part of a wonderful fused family of six along with my wife Julie and Julie’s children John and Isobel. I have put together this blog series, based on correspondence during and since Clare’s illness with the intention of communicating the positive aspects of the journey after diagnosis – the warmth between those chilling ice bucket moments. 

If this blog helps others who have found themselves in similar circumstances then I am really grateful. If people take offence at what I say, or how I say it, then I am truly sorry as no offence is intended. Everybody’s experiences are unique, a uniqueness that is compounded by the fact that we interpret our life's events through our own individual lenses. So although I sometimes attempt to draw conclusions from my experience, these are simply my interpretations. 

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.

After a Valentine’s morning to remember, Clare began the final leg of her earthly journey. At this point her voice lost its power. She did not need it any more. It was a period of great physical distress but she could now finally let go. A few days later she died and her spirit emerged from its cocoon. Clare, the beautiful butterfly, knew that she had done all that she could to help me, Jack, Ben to continue on our paths together.

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! 

Donations and Clare's Tribute Fund
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.

Sorry that this general letter is not full of seasonal cheer. To say that 2006 has been a bad year for the Mauremootoo family is an understatement to put it mildly.

Clare has motor neurone disease and her health is deteriorating very rapidly.

I have tried and tried to come up with less stark ways of phrasing this but, as you can see, I have utterly failed. Sorry for the impact of these words if you were not already aware. This particular pill is not easily sugar-coated.

Motor Neurone Disease: Dictionary definition “degeneration of the nerves in the spinal cord and brain that are responsible for muscle movement, causing weakness and muscle deterioration”. My definition: “a hurricane that rips your existing reality into tiny pieces leaving behind a new landscape composed of the fragments of your former life together with new and unfamiliar elements brought in by the storm”.

We are in the process of trying to assemble these pieces into a new reality while attempting to keep things together on this ever-changing landscape created by a “constant companion” that chips away at Clare’s faculties, though mercifully leaving her essence untouched. 

The first signs of the impending hurricane came in May 2006 when Clare twisted her ankle while walking in the Mount Kenya area [we were living in Kenya at that time]. The ankle resolutely failed to heal. In the meantime Clare became increasingly exhausted by the slightest exertion. We put it down to a pre-existing thyroid condition. However, by the time we went on leave to UK in July it was clear that Clare’s levels of fatigue could not be explained away so easily.

I left for Nairobi with Jack & Ben in mid-August while Clare went for tests to get to the root of the problem. There is no test for MND so diagnosis comprises of cataloguing the symptoms and testing for other possible causes of the symptoms (MS, cardiac conditions, cancers of various kinds, etc.). I was initially convinced that though serious, Clare’s condition was something that could be solved by a pill of some sort and perhaps a bit of a lifestyle change. That was more a consequence of the rose tinted specs I like to wear than any blinding flashes of medical insight. Clare wears similar specs as a rule but was somewhat better informed than me: a.) because she was feeling what she was feeling; b.) because her aunt had died of MND; and c.) because she had read extensively on the subject. The diagnosis for MND is a process of elimination and as ailment after ailment was eliminated Clare became more and more convinced that it was MND. The rose tint faded.

Whatever the diagnosis, it became increasingly clear that we would need to return to UK for Clare to get the appropriate levels of care.  Pity the majority of people in the world should they get such a disease – no bolt holes for your average Kenyan. Jack, Ben and I used our last weeks in Kenya together profitably – “giving the kids memories to last a lifetime” I called it – great railway journeys of the world – third class on the finest commuter trains in Kenya!; Amboseli for the swamp elephants and the last vestiges of Kilimanjaro’s famous snows; Maasai Mara for the wildebeest migration [six hours of wildebeests which Ben still remembers as among the most boring experiences of his life!!!]. 


We hoarded those planned memories plus a few unplanned experiences – notably a turned over Land Rover on the road to Amboseli. Fortunately no major damage was done though it was a wee bit nerve racking at the time to say the least!!

Armed with our memories, good and bad, an assortment of clothing and our rucksacks, the three of us returned to UK in September to stay at Clare’s Mum's while we looked for a home of our own. Within two days Jack & Ben were in a new school. The boys of course were massively affected but are showing a resilience that I hope will continue to stand them in good stead.

Life for us in a single room the size of the proverbial shoe box was challenging but we managed; as do a large percentage of the world’s population – in case you wondered, I mean that a large percentage of the world’s population live in cramped conditions (and for considerably more than six weeks at a stretch) and not in Clare’s Mum’s spare bedroom!

We moved into our new home on 5th November which was followed by a manic period of getting house stuff together – the usual new home headaches with the added challenges thrown up by our constant companion – air-bricks and joists together with stair lifts and hoists.

During that time I went to Nairobi to sort out some work things. As you can imagine work had been taking something of a back seat over this period. To rectify this situation I attempted to squeeze a couple of months work into a fortnight and sell, give away or ship out the contents of our house in Kenya into the bargain. The house stuff worked pretty well but inevitably the work stuff did not. I had been relying on Parkinson’s Law to get me through but Newton’s laws proved more powerful. Simply stated “you can’t fit a quart into a pint pot” – all of this has had multiple, complex & interacting consequences.  

A part few strands of this tangled web are summarised below:

• Cause – too much stuff to do and not enough time in which to do it
  
• Effect – business as usual not possible
  
• Consequence – need to find another way to earn a crust
  
• Some fundamental restrictions - must work from home, needs to be part-time, can travel but not much anf not for extended periods 
  
• Current status of job search – no progress. 

I got back from Kenya to find that Clare’s condition had, in contrasted “progressed” considerably... And there has been no let up since. The only way is down for those with MND. However the rate of deterioration can decrease and things can even plateau in some cases. Simple extrapolation gives little cause for optimism. Fortunately extrapolation is not prediction so we remain hopeful. As I write Clare is completely dependent on help for even very slight movements, suffers near constant pain and speaking and eating is becoming increasingly difficult.

Initially we had hoped that Clare would take the Stephen Hawking path. Unfortunately, we pretty soon learned that the world’s most famous MND sufferer is the exception to almost every rule. In most cases the disease progresses much more quickly than it has for Hawking. Tragically Clare seems to have slid down the wrong side of the Bell Curve – like Hawking she is an outlier but of the opposite kind.

In spite of it all, Clare remains a living embodiment of new age clichés – “surrender to your fears”, “live this day as if it is the last day of your life”, “see the beauty in all things”, etc., etc. Inevitably the poetry is frequently punctuated by good old Anglo-Saxon prose – those “it’s fucking crap” moments and phases, but all in all Clare is coping amazingly well. There are many other silver linings in that huge black cloud. Among them are the NHS, social services and the Motor Neurone Disease Association who are all doing an amazing job, the wider family has been brought closer together, we have been helped in numerous ways by family and friends, and last but not least Clare’s mental faculties are (and will remain) unaffected by this otherwise hideous disease. 

Inevitably the events of the last few months have been the cause of much reflection. Clare is very positive about the life she has led to date. She has seen and done a great deal and in the process, has touched many people’s lives. That is a fantastic legacy to leave. She will continue to build on this positive legacy for the rest of her life. Regarding the future, I think the phrase used to describe the loss of a loved one with  Alzheimer’s disease - “the long goodbye” are apposite, although of course the context is very different. We do not know how long Clare’s life will continue but we do know that it is extremely unlikely that she will reach the biblical three score years and ten. Unlike those with Alzheimer’s, Clare will maintain her mental faculties to the end. This gives us a great opportunity to put all of her affairs in order before she leaves us in body; and to stock up the vaults of our collective memory banks with riches that we can draw upon in the years to come.

Wishing you all a positive and fulfilling 2007,

John


Donations and Clare's Tribute Fund
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.

Dear family and friends,

I thought you might like an update from me now that I have been in the Weston Hospicecare hospice for two weeks. I have found it a wonderful place to be and I had a real surge of energy when I came here. I think this was partly due to the relief of knowing that I will have the care that I need without burdening my family but also because the hospice is just such a loving, gentle place. Being cared for by the team of staff here is often like having my old friends gently and lovingly nurturing me. I feel truly blessed to be here. My room looks out on to a pretty garden with a bird table placed just outside my window as if they knew before I came that I am a real fan of nature. Everything is given loving attention here. My food is presented on lovely plates and in beautiful cups with my own personal salt and pepper pots and a quality serviette. The bed cover is a beautiful piece of hand quilting and even the pins on the pinboard are pretty little forget-me-not flowers. I have been encouraged to do whatever I like to the room to make it feel like home. I asked John to print off a few A4 size portraits of the boys and family to put on my cupboard. In his usual exuberance he printed me 40 pictures which we have used to decorate two of the walls in a giant gallery of memories. I have also had a continuous supply of fresh flowers. Currently I have three enormous vases of all colours of the rainbow. It’s a real treat.

The other day I had a new adventure when my funky chunky wheelchair arrived. To say that it’s laid back is the best description. Makes it quite hard for John to steer it around without whacking the furniture but then he loves a challenge doesn’t he!! John took me on a tour of the hospice and I was amazed to see how big and how beautiful it was. There is a stunning view from one of the lounges up a pretty hill to an old church and from the garden you can see badgers and foxes in the evenings. There is also a lounge which has games and entertainment for kids which makes it really nice and relaxed when our boys come to visit. Favourite of course is the Play Station 2. I’m not sure that computer game bribery is the best way to get the kids to see me but it works.

My favourite room in the hospice is the chapel. It has a stunning stain glass window and a beautiful cross made of driftwood, Indian cushions decorating the chairs and a large crystal ball where you can float offering candles. It’s a really serene, gentle place. John and I enjoyed just being there talking and reading letters for a while. Once I have got a bit more energy I will go back again and light a candle.

These past few days I have been feeling pretty tired. My room was full of visitors for much of the time for the first few days that I was here. It is wonderful to be so loved though with time I realised that I have to ask people to write rather than visit because the time that I have is precious; I need to rest a lot and the time that I have I need to give to my closest family.

The doctors here have been gently hinting at this for a few days before John and I realised that was what I needed to do. Sorry that this is difficult for some of you but I promise that your love and support are coming through strong and shining through the fantastic letters that we have received. I feel so loved and supported by this. Thank you all.

John and I are at last able to relax together and enjoy being a loving couple thanks to the hospice. When I was at home it seemed that we had a full time job just managing the care that I needed. It really is a massive relief to be here.

The kids are beginning to get used to mum having her new home away from home. Ben brings in his latest drawing project and sits and chats by my bedside while he works, from time to time dashing over to check out how the different gadgets in my room work. It’s a joy to feel his boundless enthusiasm for exploring how the world works. Jack has found it more difficult to be here. I think because he is much more aware of what is happening to me. I have been very upset that he was distancing himself from me although I know it was just to protect himself. Yesterday we managed to resolve things by having another heart to heart and talking about the facts about my illness. I have always been astonished by Jack’s perceptiveness and his clear expressions of his emotions. Jack has led us through the difficult path of how to express what is happening by his intelligent and carefully spaced sequence of questions. I think when he realised that my death was coming sooner than we hoped that he just could not face it … not surprising. Yesterday we resolved things by talking openly about how things are now and it’s fantastic to have my gentle Jack being able to hug and kiss me and look into my eyes again.

I just realised that this letter has become quite sad. I had wanted to write something more upbeat to reflect the fact that I spend so much of my day smiling with joy, enjoying jokes, laughter and love with the people who surround me. It’s a happy place and I am really content here but of course it is transient and I am pretty scared if truth be told of the unknown future of my physical being. I just want to say thank you to everyone for surrounding me in love and support because I truly feel it in every moment.

Wishing you all love and peace

Clare

Donations and Clare's Tribute Fund
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.

I was dreading the funeral for many reasons. I had no idea how I would feel: would I be overcome by grief, jabber on like an idiot to fill in embarrassing silences, or experience the numbness of the punch drunk? These feelings coalesced around my eulogy, to which I gave a significance that it did not deserve. I agonised over this in a way that I had never agonised over speaking in public before. Somehow I had got it into my head that whatever I said would have a lasting bearing on Clare’s legacy. After writing and rewriting my script for an inordinate amount of time I discussed it with Clare’s brother and sister the night before the funeral over a few drinks. Clare’s legacy was not something so fragile that it could be jeopardised by whatever I was to say at the funeral and we agreed that it would be best if I just said what came into my head at the time and read out the poem I wrote for Clare shortly before she died. That conclusion helped to ease my mind and prepared me for the day to come.

The funeral ceremony at Saint Andrew’s Church in Congresbury was beautiful – lots of tears and laughter and a packed church with friends and family from far and wide. It was an honour to read out Clare’s words she dictated to me a week before she died. The highlight for me was when Jack and Ben lit small nightlight candles from the main candle that had been burning since Clare’s body was brought into the church. It was a touching symbol of the light that Clare was in our lives and how this light lives on in all of us but especially in Jack and Ben.

The sun shone beautifully making the song “I Can See Clearly Now” by Johnny Nash (Clare’s “theme tune”) all the more appropriate. The other songs we played were “Tears in Heaven” by Eric Clapton and “The Greatest Love of All” by George Benson, songs that were very special to Clare. 

Clare’s body was carried from the church to the accompaniment of beautiful and uplifting Kenyan Gospel music. Clare’s body was buried just behind the boy’s school with the Mendip Hills as a backdrop. We scattered the soil on the wicker coffin in the traditional manner but with smiles as well as tears. Ben never wanted to stop scattering and got so close to the edge of the hole that I feared he was going to topple in. 

The family made a couple of large montages of photos of Clare in the hall. The boards provided a focal point and stimulus for memories that flowed along with the drinks. Clare’s Mum organised the catering and in the true family tradition there was food enough to feed 5,000. The bible reading was “the feeding of the 5,000” – a tribute to Clare’s legendary culinary capabilities, generosity and to the abundance of this world we live in. The kids were perfectly behaved throughout with Jack and Ben popping out for the occasional game of football.

It was a shame that I could not have spent more time chatting with everybody who had made the effort to be there but that is the nature of such an occasion. Fortunately many of those who came did get the opportunity to catch up with long lost friends. It is a shame that it takes a funeral to bring far flung friends together but Clare would definitely have been delighted that so many people said things like “I probably shouldn't say it but I really enjoyed the day.” The band, old friends from Clare’s university days, reformed for one day only, were excellent and much appreciated. The sound system struggled at times but I guess that made it all the more evocative of the old days. There was no dancing. No doubt there would have been had Clare been there in body rather than just in spirit.

After a couple of days it was just me, Jack and Ben. We can now find some kind of equilibrium. There is a lot of emptiness but also a lot of hope for the future. It will be the greatest challenge I have ever faced but I know that I will not alone in facing it and that helps immensely.

Donations and Clare's Tribute Fund
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.

Needs left unfulfilled
The famous self-help guru Tony Robbins has identified the following six fundamental and interlinked human needs which everybody, knowingly or not,  attempts to meet in order to live a fulfilling life. They are:

1. Certainty: the assurance you can avoid pain and gain pleasure
2. Uncertainty/Variety: the need for the unknown, change, new stimuli
3. Significance: feeling unique, important, special or needed
4. Connection/Love: a strong feeling of closeness or union with someone or something
5. Growth: an expansion of capacity, capability or understanding
6. Contribution: a sense of service and focus on helping, giving to and supporting others.

Caring for a partner with a chronic disease fulfils all of these needs, although, of course, it is not a situation that anybody would consciously choose for themselves or for their loved ones.

Having small dependent children meant that all my needs did not go unfulfilled after Clare’s death. I had the certainty of the daily routine, a bit of variety, I felt needed and I found significance and contribution through my role as a parent. But as the dust settled it was clear that there were major gaps that would be difficult to fill. Of course there was and will always remain my massive and eternal love for Jack and Ben, but that is not the kind of love and connection you have with a partner; and although I was growing in certain ways I also felt contracted and stifled by the situation in which I found myself.

Matchmaking Machinations
Clare had anticipated my need for love and companionship in those weeks and months before her death and although Jack and Ben’s welfare was her number one priority, she was also very concerned for my well-being. She would regularly bring up the fact that I needed to find that special person after she had gone.

While Clare was living at home she did not have any tangible outlets for her matchmaking machinations. But this changed once she moved into Room 3 of the Weston Hospice. There were quite a few single nurses and carers; and Clare wasted no time in assessing their suitability for the post of the future Mrs Mauremootoo! When I came to visit in those first few days I could sense that I was under surveillance and I would often hear suppressed giggles as I made my way to Clare’s room. 

I knew Clare well enough to know the reason why. By doing what she was doing she was fulfilling some of her human needs in the best way she knew! When questioned, she confessed to her efforts to ensure my future happiness. We did not talk about much about it but Clare’s cupid impression continued unabated, even as her life force was failing. She was on a mission.

Joking aside, I did really appreciate the fact that Clare gave me permission to find somebody new. It was an act of generosity and foresight that does not come easily to everybody. The opposite attitude is illustrated in an extreme form in the Simpsons episode in which Homer has a triple heart bypass. Marge comes to visit him in hospital before the operation and the following dialogue ensues:

Homer: Now Marge, if the unthinkable should happen, you're going to be lonely.
Marge: Oh Homer, I could never remarry.
Homer: Darn right.  And to make sure, I want to be stuffed and put on the couch as a constant reminder of our marital oath.

Of course not many people in the real world are quite as forthright as Homer Simpson. But there is a feeling of guilt when looking for a new partner after a bereavement which must be compounded enormously if you feel that your former partner did not want you to move on. 

Julie
Julie and I met in Glastonbury (the town not the festival), situated halfway between our respective homes, on Tuesday 5 June 2007. It was a day that I will never forget, although the precise details are lost in a wonderful haze of love. It was one of those occasions when time stood still, when we just talked and talked and talked as if we had known each other forever. Our walk around Glastonbury town was pretty much as random and circuitous as any walk could ever be. I swear that we went around the same streets about 10 times, before finally finding ourselves on top of Glastonbury Tor without a clue as to how we got there. We were just completely absorbed in our bubble of love. That, plus the fact that both of us have a lousy sense of direction!

What can I say about Julie? She is probably the kindest and most loving person I have ever met. She has a passion for making the world a better place and a life that centres around caring for people – she is one of those people who immediately puts others at their ease. She was previously a midwife and had been working as a nurse on the Salisbury neonatal unit when I met her. She has since then diversified into a variety of caring and healing jobs and is now blazing a trail for EFT (Emotional Freedom Technique) a form of energy therapy. Julie sees the good in everybody, is adventurous, and profoundly spiritual yet is not over-earnest and zealous about all this deep, meaningful, worthy and potentially heavy stuff.

Legacies, letting go, merging families and playing the long game
Clare was still very present in my life in those early days, despite the fact that Julie and I we were deeply in love. I spoke about Clare a great deal and her legacy was everywhere in my house – photos, books, her artwork and so on. This was not always easy for Julie at the time when she, wrongly, sometimes felt second best. In a perfect world I guess Julie and I should have got together after more time had elapsed. All things considered, our romance was pretty unlikely. I was expecting a three year search, and Julie had not been long separated and only joined a dating agency because her friends had twisted her arm. So neither of us were anticipating finding a deep relationship at this stage. But I guess the universe had other plans for us. What is pretty clear is that given our circumstances, things could have never have worked if we did not love each other so much. Together Julie and I had found that perfect combination that helped us to meet those needs that were missing in our separate lives. We had found that union of two kindred spirits who could grow together as we explored our potential, and helped to contribute to the growth of those around us.

We had many hopes, dreams and aspirations, but one crystal clear objective stood out above all others – our desire to be together and merge our two families into one. The question was - How we could best achieve this taking into account the welfare of everybody concerned?

We may have found the perfect love but we were not a young couple who could just please themselves. I had two children, Julie had two children, Julie had her job, and John and Isobel had their Dad who lived close to them - a few of the very tangible things, all of which are collectively known as “baggage”.  Baggage is not a word I am very comfortable with, as it implies that your loved ones and the sum of your experiences represent something heavy – a kind of burden. I prefer the words “history” or better still “legacy”. But whatever word you choose, the fact of the matter is that me, Jack and Ben, and Julie, John and Isobel did not all come from the same family unit; and, other things being equal, this does make some things more challenging than they would be for a “conventional” family. So we ended up weighing up every major decision we made with the needs of all “stakeholders” in mind.

One of many examples concerned social gatherings. Initially, we probably tried too hard to engineer the “perfect family unit” - one in which you can’t see the joins. For example, we would always want all four children to participate fully in events organised by either my friends or relatives or by Julie’s friends or relatives. But it is actually OK if this doesn't happen. We took some time to learn that! We cannot deny that some bonds will be closer than others – this does not constitute a crisis but we sometimes thought that it did in those early days when we aspired to a kind of “family communism”. Paradoxically the less you try the easier things get and over time the family has actually become amazingly fused. We now have a shared history that is systematically becoming longer than our separate histories. The joins may still be visible but we are most certainly a family unit.

In family fusing, as in so many aspects of life it is best to play the long game. To fully appreciate how far you have come you sometimes need to stop, reflect and look back down the line. One of those days for reflection was Friday 13th April 2012 when Julie and I got married in Glastonbury - our special place. All sides of the family were there including Clare’s folks as well as John and Isobel’s Dad. It was a magical day in which Julie and I could publically celebrate our love and thank everybody who helped us along our journey. There have been a few ice bucket moments along the way and no doubt there will be a few more before we are done. But ice melts and it doesn't have to keep you frozen in time. 

Donations and Clare's Tribute Fund
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.