Halloween thoughts

Saw Ellen’s play last weekend, her first professional production for which she designed set and costume.A great production set in the 1920s with a brilliant art deco backdrop and stylish costumes.  Photos can be found here: http://kirstensphotos.mediaobjects.co.uk/c1600208.html I hope Kirsten doesn’t mind me posting the link.

I’ve been finding frustration in the lack of flexibility associated with going out, everything has to be planned.  Sometimes this is fine, but at other times it can be quite inconvenient and detracts from the enjoyment of an evening.  I get irritated by my diminished lung capacity which makes it very difficult to have conversations in bars or clubs, especially when coupled with the minimum distance between me and the person I’m talking to imposed by being in a bulky powered wheelchair.  Unless the person is sat on my lap (which is occasionally unsuitable) it can make it difficult to have a coherent conversation when out and about in noisy environments.

Talking to new people can sometimes be a challenge, some people become comfortable very quickly, with others it takes a long time and I have to decide whether to be very open to talking about disability related issues and subtly prompt them to ask related questions which they are curious about.  With some people it is an unsuitable approach and they become uncomfortable with the openness of the conversation, in this case it’s best to avoid disability related conversation and pretend it doesn’t affect me in everyday life.  Depending on what mood I’m in, sometimes it’s great if someone starts chatting away comfortably about something unrelated to disability and doesn’t seem to have a burning curiosity about how I deal with things or how I’ve adjusted my life, at other times I don’t mind if all they want to do is get to know what it’s like going through such a long rehab or be told how strange being weaned off a ventilator is.  I think Ellen gets this a lot more than me, sometimes I think she gets fed up with telling people about my situation all the time and getting similar shocked reactions, at other times I think she enjoys talking about the challenges we face together.

Living with full-time care has its challenges, maintaining a professional relationship is extremely difficult and no matter how much someone tells you how important it is you don’t really appreciate it until you’ve experienced some time out on your own with carers.  To feel like you have control over your life requires you to be very strict with how and when you want your care, making sure your carers do not take liberties and are only about when you want them to be and not when they feel like it is very difficult.  Ensuring that you do not feel guilty or obliged and remembering that you have no social obligations to them, and this is their job, is very important so that you are not encumbered with reluctance in making important decisions regarding your care.  Having said all this, it is also important to treat carers with respect and to make sure that they understand this need for control and professionalism so that you can maintain a friendly relationship at the same time, because without it it’s no fun.

I saw my dad, Gillian, Lucas, Josephine and Polly over the weekend after a great evening in Oxford with Laura, a great friend from university.  It was really fantastic to spend some time with my dad’s side of the family, I really do miss them and it’s going to be great when I can visit them in Switzerland (they are in the process of adapting the house with a fancy lift mechanism).  They are growing up so fast and it’s great to see how full of life and sensitive they are.  They both really touched me with their fondness, Josephine made me a lovely card with “a million hearts” and Lucas was noticing everything about my lack/presence of physical movement and in what ways I needed help.  Lucas was confused by why, when he lifted up my arm, it didn’t stay upright and fell back down. 

Looking forward to Ellen coming back from Cardiff this next week.  Pavilion is looking incredible, on track for finishing early to mid December.  Planning for independent working in the pavilion with environmental controls.  Feel very lucky to have such an amazing place to live.

(Please contact David if you want to post a comment but cannot get in – nabarro@un.org)

Best Halloween wishes to everyone.