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.
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.
Mount Kenya 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.
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:
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.
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.
Stephen Hawking (Wikimedia Commons) 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.
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.
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.
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