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Living With Cerebella Ataxia

“LIFE IN A DAY”. (Part Two) Living With Cerebella Ataxia.A New Beginning

On Wednesday night I set myself a stiff test, and passed it. Just.

I attended an interview process to become a Samaritan phone listener, and whilst in isolation this is an important step in anyone’s personal development, it was just as much about the mechanics and logistics of how the evening panned out.

In January 2005 I was diagnosed with a catastrophic degenerative brain disease, Cerebella Ataxia (CA) which left me totally dependent, wheelchair bound and with failing eyesight. In addition I had to face the fact that this form of CA was a terminal affair.

But in January of this year the Professor of Neurology at Barts and the Royal London Hospital, to whom I had been reluctantly referred by the Consultants at Hull Royal Infirmary, informed me that he, in conjunction with a Colleague in Paris, had developed a drug therapy programme which was; “having a considerable impact on how we can deal with CA and it’s destructive development”.

We were elated and plans were well in hand for me to start the first of four treatments commencing on 4th June.

Four days before the therapy was due to begin, the Primary Care Trust decided against funding the Professor’s plans. Cue a long and bitter fight with the relevant authorities which was only resolved by an amazing stroke of good fortune, when Hessle and West Hull M.P and colleague in the Labour Party, Alan Johnson, was appointed as Secretary of State for Health by new Prime Minister Gordon Brown. One letter and within the fortnight the matter was concluded in my favour.

I began the drug therapy on 10th September and within the week the nerves and muscles in my legs started to recover, and I am now able to walk with some semblance of normality and more importantly it would appear that the prognosis is very positive.

As a former teacher with a strong interest in Pastoral Affairs, it was a somewhat logical decision process that brought me to the idea of being a Samaritan. I had developed skills and worked with some very damaged people in the process, so this seemed a natural alliance, and a way to regain some self worth and satisfaction. I have always been a very driven person on the sly, expecting a lot from myself and if I am honest I back myself in most situations so I relished this challenge. Arrogant? Probably, yes.

So on Wednesday evening I set out unaccompanied to attend an interview at the Samaritans Hull HQ, a journey which comprises of two ten minute walks sandwiched by a twenty minute bus ride.

When you haven’t been outside the house alone for three whole years, a whole panoply of emotions are stirred up. The major one being vulnerability, both physical and psychological.

I am unable to turn around whilst standing up, and addition nystagmus renders me effectively blind, so when walking down the street I am acutely aware of the possibility of falling on uneven surfaces, plus the uncertainty of who is around you, and more importantly if they have any nefarious intent.

Statistics show that street crime is a vastly exaggerated phenomenon (fuelled by the Daily Mail), and that the Public’s perceptions fuel an unnecessary fear. But nevertheless, such thoughts seem to be heightened for me at the present time, and I can only imagine how elderly people feel on a day to day basis with such insecurities an ever present feature of their lives.

I completed both journeys and felt elated by having done so. But, as my life is currently so fluid, euphoria can be just as damaging as depression. How would I react to a relapse, or a setback in my newly independent life such as a fall? Best to treat both emotions with a straight bat and try to seek a middle path.

The Samaritans interview process was interesting, as usually in such situations in a professional context I would be the one in control and calling the shots, rather than reacting to the direction of others.

I committed a faux pas by arriving dressed in a suit, when for everyone else it was a T shirt and jeans affair, but I overcame this by quipping that I was a salesman in the wrong building (which probably made me look even more of a jerk).

We had to play various ice breaker games, and despite never having been in the company of complete strangers for over three years, I felt surprisingly relaxed, and felt that my old people skills had remained intact.

As I expected the rest of the group were empathetic with my physical failings, but in a subtle way which did not include obvious acknowledgement and I felt perfectly at ease and confident which heartened me no end.

Overall the experience was extremely positive, and confirmed my innate optimism that it is always better to expose and challenge yourself to move forward in matters of personal development.

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About dermotrathbone

Writer and co author "Through Red Lenses". Activist Unite the Union, Save Our NHS Hull. Fan of Yorkshire County Cricket Club, Hull FC, Munster and Ireland Rugby. Views are mine alone and may not reflect the organisations concerned.

Discussion

One thought on ““LIFE IN A DAY”. (Part Two) Living With Cerebella Ataxia.A New Beginning

  1. I think becoming a Samaritan phone listener would be something you would really be good and will get a huge amount of satisfaction from. Both my parents were Samaritans (they met eachother there) and I admire them all the more for it. Good luck with it!

    Posted by rebecca | October 6, 2007, 7:45 pm

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