Month: June 2016

Taking inventory: From the outside looking in

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Winding the clock back to the end of December last year, when the New Year was so shiny and new it had yet to begin, I had a conversation with my therapist where I had a definite “light-bulb moment”. In need of motivation for the year ahead, I decided to write a list of up coming events and extras (mostly outings)  which would give me something concrete to look forward to, brightening my semi-life..

During the year, I’d attended several weeks of a pain-management program. We were taught how to set manageable goals, by making them S.M.A.R.T.:

  • Specific
  • Measurable
  • Attainable
  • Realistic
  • Time-bound

My “Looking Forward” list was an extension of this technique. I followed one last piece of advice from the psychologists, which was to make goals public to give help to be able to stick to them, injecting intentionality into the project.. That’s why I published it as a blog post. Friends and family heard of, or read of, my plans with enthusiasm, and encouraged me to do my utmost to accomplish as much as possible.

The original list from 27/10/15 was as follows:

“In 2016 I’m looking forward to….

  1. Becoming an Auntie for the first time
  2. A close relative’s big birthday
  3. Going to see Boyce Avenue (a band who first found fame on YouTube coverong
  4. Going to indie food fest
  5. Going to a theatre show (yet to decide on what, where and when)
  6. Going to the seaside I miss the sea
  7. Visiting Susan with Debs and a sidekick
  8. Listening to Daily Audio Bible Every Day
  9. Keeping a gratitude journal (find a regular time to do this every day. Maybe 6pm?)
  10. Keeping up with Pain Management Programme activities:
  • Review goals on a bi-weekly basis
  • Every Thursday at 11.30am read through PMP course material
  • Practice mindfulness at these times minimum
  • Review Activity Level – is it at as steady a level as possible day by day?
  1. Reading a book a month on a completely new topic I know nothing about.
  2. Going to a different church from mine every 6 months
  3. Streamlining my spending (not sure yet what this looks like
  4. Sending a small but appropriate gift and/or card to a friend going through a hard time, Aim to do this a few times this year.
the days that changed my life
month-per-view calendar

Six months on, my life is unrecognizable, partly from the move to a new area, no longer living independently and receiving 24/7 care. Some items on the list have had to be abandoned, (was unable to use passes for indie food fest,)as it is harder now to find carers to accompany me on outings, since the home can be short-staffed at times, and everyone is needed here. The home do their absolute best to allow some of the requests where at all possible. Going out is now mega-tough.

It wasn’t all good!

Items 8 and 9 required habit-forming to really impact my life, and sadly this just did not happen. At the end of last year and beginning of this one I had a period of illness where I was unable to leave my bed at all, due to a nasty bout of cellulitis in my good foot, which lasted 5-6 long weeks. The antibiotics alsocaused havoc in my body, lowering my immune system, and ensuring another infection soon followed. Once all of this had healed, I became more fatigued than I have been for years, losing the energy I had built up with extreme care over a number of weeks while attending the Pain Management Programme and building activity levels. I’d been feeling better, and that was all gone. Upset, my mood sank lower, and my comping mechanisms became more and more erratic. A care-planning meeting added to the upset at the time, as it seemed nothing was achieved at all that was much practical good. However, those who needed to realise just how hard things had got for me began to see just what I was facing, the first of several answered prayers in the first 3 months of the year. Some weeks later, I was given respite, and following that, funding to make it a permanent move. The swiftness of the answer meant that no one was prepared for it, and 10 minutes before leaving for the Boyce Avenue gig, I finally heard the answer I’d been seeking. Almost 3 months on, I’ve now settled in the home.

First Gig in Years and a meet n’ greet!

Fortunately, some items on the list were completed before the move, and some I’ve documented in this blog. I became an Auntie to baby Euan on 11th February this year. I made it to my Gran’s 80th Birthday meal at the end of May, and loved it despite all the effort. Going to the Boyce Avenue gig in mid-March was a guaragutan effort too. Organising a side-kick, taxis to and from the O2 Academy, and the all important tickets of course. To ensure I’d no problems with my ostomy while out, I just didn’t eat an evening meal, and drank as little as I could. I’d guessed, correctly as it turned out, that getting to the disabled toilet would be a palaver, and this was the only way to avoid those stresses. My strategy worked until I got home, which was a relief. I didn’t want to miss any of the gig and was fortunate enough to briefly meet handsome Calum Scott, from Britain’s Got Talent (2015), the support act to the UK-leg of Boyce Avenue’s tour. If you are wondering who the heck they are, check out the You-Tube links to their music.

Despite all the upheaval in my life, I’ve managed to continue thinking about what I learned from the Pain Management Programme, and attend two further sessions, but missing two due to illness. I’ve pulled out of the programme now due to the difficulty of travelling two or from Leeds, and of finding a side-kick. However, at an appointment this week, I’ve been given a reading list, and will be sent programme material in the post at the times the group meet with each other. Very happy with those arrangements, to allow me to continue learning and accomplishing my goals. One, was to gradually begin writing and publishing blog posts again, another to continue with gentle exercises and stretches I was given while attending the course, and the other goal to go out with visitors rather than staying in. Due to my change in circumstances, the third goal is not so achievable. I know I am doing as much as I possibly can and am learning to be content with that.

I’ve surprised myself with how much I HAVE done, and I’ve gained new memories, made new friends, re-acquainted with old ones, and built on aspects of myself I knew needed more work. I have more confidence from pushing myself despite often feeling lousy. Doing more has pushed me to want to do more, despite reduced energy levels these days. The days in-between activity days have become recovery days rather than rest days. Having a ‘rest’ just is not enough. I’ve needed more and more sleep after outings, and even in the days before hand. I now read veraciously, and more widely than before, from Women’s fiction, poetry, books on how to write poetry, fiction or memoir, a book of Spurgeons sermons on prayer, which I’ve not long begun, and many more, even some YA books. I colour in, am back listening to music, and nudging my friends if it’s been a little long between contact.

I’ve yet to go to the theatre, but have recently been to the cinema, and have plans to go again to see the much talked about movie version of ‘Ab Fab’. Hopefully I’ll get to see the seaside over the summer, possibly visit my friend Susan who doesn’t live all that far away.  Of course, I have yet to have the operation I’ve been waiting for.I’m looking forwsrd to getting rid of my heavy hernia! I am sure there are other things I can add to the list. If you have any suggestion, feel free to post a comment below.

Review: ‘Me Before You’

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From Book to Movie

Having read the novel Me Before You when the book was first released in 2012, I looked forward to the release of the film adaptation with excitement. Reviews I’d already read of  the film adaptation were extremely critical, one declaring it a ‘Deathly Dull Euthanasia RomCom.  One Google search with the words “Me before you controversy” pulls together a fascinating array of articles. From questioning Hollywood’s attitudes to disability to coverage of the protests at the London premiere of the film, and comment pieces in abundance from people living with an impairment/ physical disability, ill health or mental health issues, (links below) to an article from director Thea Sharrok herself, who says that at it’s core “It’s a fictional story about how important the right to choose [to live or to die].

Last Saturday (10/06/16) I finally saw the film adaptation of ‘Me Before You’ with my Mum (and Dad) Some of this post happened through discussing the film with my Mum over coffee after we’d watched it and so she deserves an acknowledgement.

 Having seen the film, on one level I wasn’t sure what all the fuss was about. ‘Me Before You’ is essentially a slushy rom-com/chick-flick. If you usually like this genre, you’ll potentially find the film an enjoyable way to pass an afternoon, but if you don’t, you likely won’t.

Skip the rest of this post if you plan to see the film but haven’t yet had the chance. 

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16451997 – illustration of black clapper board for film, movie and cinema production isolated on white background with reflection effect Copyright: scanrail / 123RF Stock Photo

SPOILER: Two thirds or even three quarters of the film is true to the book, (including a certain pair of tights, and a red dress.) Lou, played by Emilia Clarke  is noteworthy, goofy, accident prone and funny, and in a difficult situation. Will’s mother, (Janet McTeer) whose heart seems quite broken by all Will has endured. Charles Dance is great as Will’s father.

Will himself (Sam Claflin) is struggling to handle the cards life has dealt him. [However, some disabled people have also complained the screenplay casts an actor in the main male lead who is ‘cripping up’ — pretending to have a severe impairment but being able-bodied. I don’t always get my head around this argument but understand it to mean than to live with some form of impairment is to be part of a culture (of disability) with its own history, culture, vocabulary and so on, and without this lived-experience, an able-bodied actor is unable to do the role justice. For the sake of context, this would be similar to an actor ‘blacking up’. That is, using makeup to darken white skin or to make dark skin darker.

For the disabled people who protested at the film’s premiere in London, (including supporters of the charity who have overall responsibility for the home where I live) and supporters of ‘right-to-live’ user-led movements such as Not Dead Yet, I understand your concerns. Help to live as full as life as possibly is vital, whether from a congenital disability, or after some other major trauma including but not limited to hemorrhage, stroke, or brain injury. Targeted support to pick up the pieces and live a full life is crucial.

In my own experience at least, growing up with a physical disability is entirely different from acquiring one, as I’ve never known any different. I don’t have a store of memories from an ‘able-bodied life’, torturing me at every turn, as Will Traynor’s character did. Yes, I was much more able in my teens than now, and I didn’t appreciate it nearly as much as I think I should have. In the years following, I’ve picked up further diagnosies, and undergone further operations. It can be unbearably hard, but there is much to be gained from persevering. 

 The film however, is not ‘real life’.

Anyone who chooses a different option also has to be bold in their choice, (hence twitter hashtag #liveboldly) set against whatever opposition or obstacles may come their way. Yes, they should be offered counselling,  as Gilbey suggests in his bleak critique of the film. Me Before You is a fictitious work written to tell a story, a piece of escapism admittedly skimming the surface of life with an impairment, to fit the book into the two hour time-frame. Shouldn’t we allow art the freedom of not always having to imitate life? If it were true to life, would it be as entertaining, or offer a temporary reprieve from one’s own experience of life?

There have been strong advocates for the ‘right to die’ movement, especially over the last decade and before that The late Science-Fiction author Terry Pratchett was one such person, who, in the final years of his life used his fame to promote his views and prompted a discussion of the legislation. The recurring attempts to alter current law to allow Voluntary Euthanasia (taking one’s own life) or Assisted Euthanasia in the UK, (allowing people who make this choice to have help from someone else to end their life) without the person who assisted another fearing prosecution, have so far proved unsuccessful. Dignitas themselves, claimed in the Daily Mail as recently as September last year that One Briton dies in the Swiss Clinic every fortnight (26 Brits, on average per year). Considering the population of the UK that same year was estimated 64.6 million (thank you Office for National Statistics! (ONS) That’s a tiny percentage even excluding non Brits. Of those who have travelled to Dignitas to end their lives, they include 23 year old Daniel James (in 2008) whose story Will’s character is very loosely based on.

To force all the above arguments, (and more not covered here) on a 2 hour Hollywood film daring to address the subject seems rather unfair. One film can surely only offer a cursory glance at best, and while there are polarised views on such a sensitive subject, any media form will never please everyone.

For Hollywood to address disability once more is another step forward. How many people in Hollywood, an industry obsessed with appearance actually have any experience of disability? Should this even matter? Penny Pepper asserts disabled people want to see films of people like them. Does that make for enough drama for Hollywood to be interested in making films aimed at so targeted an audience, even if the stories are true? Indie films maybe, but then there’s the question of how to finance such a project without the big budget of Hollywood aiming at a mainstream audience. As for Pepper’s argument that the film’s theme is one of death being preferable over disability, the film is only showing one story, one choice made by a tiny minority. I’m hoping I didn’t spoil the film for anyone who has not already seen it. Sorry if I have. If you like romantic comedies do see if for yourself!

Over to You:

Have you seen the movie yet? If you have what do you think?

In your opinion, Is disability represented fairly movies? What about books?

Really interested in discussing the issues I raised:

  • Is creative licence for entertainment purposes.always permissible.. or should real-life issues be presented realistically?
  • Should films which feature disabled characters be targeted at a narrower audience but cover issues in more depth? Would this create more problems than it solves?
  • What about the-right-to-die theme? What are your views? Allowable in specific circumstances or devaluing the lives of disabled people? Or do you have a different opinion altogether?
  • Anything else you think I ought to have covered?

A select few of the myriad of posts, reviews and articles I sifted through while researching for this post are listed below:

Robert Booth in The Guardian ‘He wasn’t prepared for a second-class life’: why injured rugby star went to Switzerland to die (18/102008)

Ryan Gilbley wrote in the Guardian about disabled people not being ‘a thing to be pitied’ (02/06/2016)

Rowena Mason in The Guardian ‘Assisted dying bill overwhelmingly rejected by MPs’ (12/09/15)

Penny Pepper in The Guardian Opinion ‘We long to watch disabled characters like us. Instead we get Me Before You’ (01/06/2016)

Terry Pratchett’s video has been posted on Documentary Heaven (date unknown)

Sam from So Bad Ass has written her own review (30/05/16)

Kim Sauder in Huff Post‘s Blog ‘Why Are You Complaining? Some People Actually Feel That Way’: A Critique of ‘Me Before You’ (25/05/16)

 

What’s so hard about going out?

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‘Worry Wart’

I’ve found this post so difficult to start. I have tried several times in the last day or two, but not managed to concentrate long enough.  The words have jarred so in my head, that I’ve ended up deleting them and going outside for fresh air. Still, my mind refuses to quit jumping from topic to topic, thought to thought. I’ve cut, copied and pasted so many times trying to make the words fit despite the chaos in my head!

I’ve always been a worrier since I was very small. Outings have always been hard since a young age because of the need to be near a toilet. Growing up, I still went camping with The Brownies, and The Girl Guides, even though the latter meant sleeping in tents… and dashing to toilets. I’ve been on numerous picnics with my family or while on a Scripture Union holiday. I always worried about accidents, and developed something of a fear of public loos.

There were other worries too. Since I was very small, I become easily disorientated, sometimes even in familiar places, getting lost as easily as a young child might do, and have been known to panic in crowds. Having the spatial awareness of a 10 yr old is the reason why I’m not allowed to drive, but somehow, still allowed to be in charge of an electric wheelchair!  I don’t know how I managed to move away to university twice, given these sorts of problems, but now many years have passed since my move to the wrong side of the Scotland/England border, I’m very glad my parents gently encouraged me to accomplish as much as possible. I was no different from my brother in this respect, having both left home at a similar age. However even if going out while at uni or when I lived in my flat was as ‘simple’ as going out for a meal with friends, out to a friends house or out shopping with friends, I’d be so anxious beforehand so as not to sleep much the night before.

Argh….!argh

As time has gone on, and my health issues have become more complex, going out have become much more of a thought, and required more planning than ever. Even weeks or days before an outing, I’ll worry whether I’ll be well enough to go at all, and how much going out will take out of me, or if it will cause a pain spike. Remembering to take spare ostomy kit and spare clothes, medication, my phone in case I got lost, always having a drink with me because of greater risk of dehydration, and so on alleviates some of the worry. However, I’ve even had panic attacks and lots of trouble with anxiety, especially in the last few months, before I made the decision to move. I’ve had mindfulness training and other help with my mental health due to the toll my physical health has had on my mind. I find it useful as a practical skill to calm down if i’m in a state of heightened anxiety. Of course, I still pray at times of worry and panic too, as mindfulness is no replacement for prayer, and nor is it intended to be.

‘Somebody stop me’!

Tomorrow, I’m due to meet up with a faithful friend I haven’t seen in 2 and a half years. I should be excited about seeing her and catching up on all her news. All I can think about is if I will feel well enough to enjoy being out, if my friend will be shocked at the differences in me, and how I will manage to stay calm while navigating an area unfamiliar to me. There is of course, the usual worry over toilets! I will be with a carer as I am unable to do this kind of thing on my own. Much to the staff’s confusion, as they said they didn’t want to feel like a spare wheel in a private conversation. Fair enough… The worries around going out have become enough for me not to be concerned about this, as it is far more important to be accompanied and hopefully relax enough to forget everything for a little while, other than enjoying seeing my friend..

Making such an effort to go out means I’ll have to schedule in ‘recovery time’ afterwards, chronicillnessmeme2to try to recoup some of the extra energy used. Going from day to day can mean I need a least one recovery day in bed, so adding extras to my week isn’t easy. It’s very necessary for me though. It’s a big part of feeling as though I’m living, and not simply existing. Being with friends or family energises me, and I love being around people as much as ever. Despite all the effort, I’ll continue to push myself to go to new places and keep seeing my friends occasionally, rather than them always having to come and see me. A carer commented today that I seem to have lots of friends. I think it’s in part because I’ve learned the hard way that you have to be a good friend to others to make good friends. I wouldn’t have it any other way… and I get to nap after!

Over to you….

 

  • Áre you a worrier? I’m interested to hear how you manage those worries, whether it be through keeping a journal, hitting the gym or something else.
  • If you also have an illness (physical or mental) or a disability, do you find it difficult to meet up with people or to go out? What are some of the ways you cope with going out, or coping with not being able to go out?