Being an Outcast and Leper

I think I know what it is like to be a leper and outcast, as soon as I tell colleagues about my illness communication ceases to exist.  It is hard to take, for example, an academic colleague who I have known for around 25 years and for whom I have acted as a referee and was a founder member of his journal’s editorial board, does not reply to e-mails you begin to wonder what's wrong with you.  The, disease is a physical business and does not diminish my knowledge and experience.  I can only conclude that the lack of communication is in fact closure because he doesn’t know what to say to me, but it would be good to know that was the case.  Other examples include an experienced senior manager with a deep interest in vocational education. We worked very closely for five or more years but he is not talking to me anymore and no longer thinks of me in terms of business opportunities. Nor does he just pick up the phone to find out how I'm getting on.  Even my best man is ignoring me; it upsets me as I become more and more isolated.  I already sense that my opinion is not valued quite so much with family and friends. 

Being referred to in the third person as he or him is in my view dehumanising and degrading, after all, I do have a name.  An example of this is when Liz and I went to a coffee fundraising event for a very large charity.  We had just settled in with our coffee when we were approached by one of the professional staff of the charity, who assumed that Liz was my carer and started a conversation with her about me with me there!  Even when Liz asked me to comment on the conversation this professional lady continued to ignore me!  It was as though I was blind, deaf and dumb.  I have to say this is not the first time, doctors and nurses do this frequently.  Telephone conversations sometimes fall within this category that is talking the about his condition when present. 

Enough of this, it is Christmas time!  Yesterday we went to visit Liz’s dad who is 86, lives on his own and is a legend in his lifetime as far as our kids are concerned. He never throws anything away and is a source of information about the village where he has lived all his life and Liz’s family history. Tonight we’re going to a carol service with mince pies and mulled wine afterwards.                       

Happy Christmas to my bloggers, fat or thin, big or small, hair or no hair.  Have a good time with family and friends.  I will not be writing my blog over the holiday period.  Sorry about that but I want a drink or two G&T of course and some chat. 

My crafty side

When I was thinking of what I was going to write my brother sent me a video clip which I have included here.  It made me smile. I hope it does the same for you. We all need a smile in the morning to start the day to get the face muscles moving in the right direction!  Access might be immediate on opening the package if not try this; right click on the title highlight package object then there is another popup menu, choose activate contents, good luck. drill_team_for_retired_guys1.wmv                                                                                         

Many people have read last week’s blog by Grace, by Monday 109 visits which I don't think is bad at all. In fact, we have had several messages showing appreciation for the blog and passing the address on to other people which is what we want. With that in mind we have now made some progress towards the Reform club drinks reception fundraiser as Prof Mathias has agreed to be the guest speaker.  He is the autonomic nervous system specialist and works closely with Prof Andrew Lees.  They are both my consultants. The invitations will go out at the beginning of January for the event on 9 February 2012.      

 The other exciting thing that is happening is that my collection of contemporary ceramics built up around 20 years is to be exhibited in the Craven Museum for three months.  It will enable me to see the pots in a different light and Liz to clean the shelves and live in a half empty house.  There is something    satisfying about this, a celebration and closure of part of me. The exhibition starts on 19 January with a preview evening on 18 January 2012.                                           

That leads my thoughts on to the wider crafts community.  Yesterday we went to King Street workshops in Pateley Bridge for their annual Christmas open workshop event. We particularly like to see Debbie Moxon, a jeweller who mostly works in titanium. We met each other 25 years ago in the Otley workshops when I was working as the Visual Arts Officer for Yorkshire Arts, which was at the time the regional arts development agency for Yorkshire. We have purchased her work periodically over that time. Nothing is too much trouble for her including commissions and repairs.  What I like about visiting people like Debbie in their workplace is that you can support a small business producing beautiful things at a marginal cost of High Street shopping.  Craftspeople like Debbie are also an integral part of the creative industries.  They are largely ignored because they are lifestyle businesses and have little or no potential for growth.  Anyway Debbie was very excited because in the New Year they are going to strip out their workshop and rebuild it completely to celebrate their twentieth anniversary in Pateley Bridge.

 There are also a very good felt maker, a maker of exquisite hats and glass blowers on the site.  The glass blowers, Sanders and Wallace, were able to set up 25 years ago because they received a Yorkshire Arts grant recommended by me. They have been terrifically successful ever since.  They make enough money to have the kind of lifestyle they want and make beautiful glass perfume bottles, vases and lots of other things.  Watching them hand blow the glass is mesmerising and so skilful. I support lifestyle businesses because at the very least they are employing themselves, buying goods and services so consequently making a contribution to the local economy.  Do you agree? In many ways I envy them because they are able to continue their creative work and give people pleasure and be valued long past retirement age.

                                                                                                                                                                              

Grace

This  blog is special as my youngest daughter Grace happily accepted the invitation to say what she thought about me and my MSA. Here it is.

When my dad asked me to write this I felt a little unsure of what I could write and how eloquently I could express myself.  I thought about it and thought if it can help him then it will probably help me as well. I also could never say no to him!

I am currently living in NYC finishing my MA in Corporate Communications. This was something I committed to in late 2009 and was to a small extent a method of moving to be with my American boyfriend who I met in St Andrews. When the time came to make the move I was pretty uncertain and if it hadn’t been for a lot of my friends convincing me that, even though I loved my dad I couldn’t put my life on hold for him, I wouldn’t have gone. They also were probably right when they said he wouldn’t want me to anyway!

My friends have been a great support to me in terms of being an ear to listen to my concerns and feelings, but I wasn’t able to tell them, apart from the girls who lived with me at the time, about my dad’s disease for a full ten months. I wasn’t really ready to accept it and I guess that was reflected in my silence. I am not very good at expressing my emotions; in fact I am fantastic at bottling things up, this works to my detriment and my emotions usually surface in an unusual way. Reid sometimes gets screamed at for not cleaning when really it is a combination of homesickness and frustration.

My dad’s illness frustrates me because it just isn’t fair. It is not fair on him; a man who worked so hard his entire life does not get the active retirement he always wanted. It is not fair on my mum because she has to balance her worries about my dad’s safety with his need to be as active for as long as possible. In my case I don’t think it is fair that just when I really began to develop an adult relationship with my dad and really appreciate him as an equal, with similar interests, he is no longer able to share those interests with me. I am still working at getting over the unfairness of it all.

When I finish my MA I have a decision to make as to whether I move back to the UK or stay in the US. At the moment it is very much up in the air and I am leaving the decision to those who are willing to employ me. I just know that when the difficult times do come I don’t want to be thousands of miles away across the Atlantic and I would be willing to drop anything to be closer to family.

This probably hasn’t been a very cheery blog entry. What I can say is that Dad’s illness encourages me to have more fun, explore more places, take a few more risks, and care less about the opinions of others. It made me realise that you never know what is around the corner and that we should all try to live our lives to the fullest while we can.

Thank you for this, There is a lot we have never talked about so we have some catching up to do.