The Good in MSA

Not much has happened this week so I have been reading other blogs which have led to this topic.

 We all have to die sometime and it is only a matter of when and where and what.  We put this in the back of our minds at least I did and never try to think about it.  Death is something we simply don't talk about even in religious circles.  What I mean by this is that we do not engage in discussions about our own death probably because if you have any religious tendencies there is life after death if you have obeyed the religious rules.  Whatever else death is it can be a messy business; personality changes, pain, and doctors trying to keep you alive as long as possible!  I hope that I will not be a pain in the backside for my family but be able to make the best of what's available as we go along this journey together.  So what is the good in MSA?

For me, I now know I am in an end game with a limited life expectancy.   It is not like being run over by a bus, a sudden death with all the regrets for friends and relatives that can surround  events of that kind. So my take on this is not to waste time being sorry for myself or saying why me, but put the time to good use.  At the moment I am organising, with Eve my daughter and her husband James, a fundraising event at the Reform Club in London [ I have been a member of the club for over twenty years]. It is to take place on the 30th November and our aim is to raise awareness of MSA and hopefully money  for research into the illness..  I would not have done this if I had not been overtaken by the disease so I think it can be described as a good.

I have five grandchildren and to be honest until recently I have not been very interested in being a grandfather but that is changing although I cannot do much for and with them.  I am   enjoying seeing them grow up. My son’s daughter, Freya, and my daughter’s son, Adam, have started school for the first time this week and both seem to be settling well.

It has also made me think about relationships and two stand out for me, the Pakistani fruit stall holder in  Skipton market and my barber.   I have been going to my politically incorrect barber with his girlie calendars for over 20 years.  He is a real talker and chats away  always remembering who you are [I have a poor photograph of him which I have  included in this blog].



My Barber  and Assistant



  We have visited the fruit stall on Saturday, on and off now for 34 years. The boss has not changed much over the years and we go through the usual greetings and exchanges every week and now that Liz goes on her own he always asks her how the boss is.  We are growing old together and we’d really miss him if he wasn’t there.    What value do you put on relationships like this?

 I can pretty much choose where I die, so that is another positive but perhaps more than anything else I am with a few exceptions experiencing the very best of people.  This is manifested in different ways from a small unsolicited gesture of encouragement in the gym through to practical support from our friend  Sue driving me places and intellectual stimulus from my lunch partners, Ian and Adrian. With a supportive Middlesex work environment and great colleagues such as the HE@Work team I  feel valued. 

One big good that comes out of this is I do not worry anymore and have stopped biting my nails which I have always done  - Liz now has to cut them for me which is a new experience for both of us.

Liz is a very big good in my life too, but more of that for  later.