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Hospital Glam

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I loathe hospital gowns and the uniform anonymity that comes with them. All patients look alike, stripped of all identifying features, and devoid of clues as to their background, interests, likes and dislikes, and professions. I think this can be extremely damaging, as it encourages the mindset in clinicians that patients are somehow different – it’s them and us.

The comedian Richard Herring writes about the distinction between the disabled and able-bodied. Except that he refers to these two groups as ‘the disabled’ and ‘the not yet disabled’. Any one of us, at any time, could be touched by the cold fingers of severe illness, or severe accident, either of which could have long-term ramifications. Disability does not respect status, education, age or profession. The line between these two groups is narrow, and easily crossed (in one direction, at least).

Hard as it is, I think it’s important to recognise the humanity behind the suffering of hospital patients (and those outside the hospital who are sick or disabled, or both).

So I put up photographs of my life outside the hospital, I get dressed, and I put on make-up. It takes effort, of course, but I think it goes at least some way towards bridging the gap; reminding clinicians that, in many ways, I’m just like them.

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France Part 1

So much to say, so I’ll start with facts.

Richard and I, along with 7 of our friends, spent a week in Chamonix, over New Year.

We stayed in a 1st floor flat, along with another couple, and the others stayed in the same building, but 2 floors above us.

I gained a huge amount of experience and confidence from this trip – our first holiday outside the UK in the almost 3 years that I’ve had a feeding jejunostomy and Hickman line. Logistically, that meant a LOT of stuff had to come with us; not just the supplies that I use routinely, but also the things that I would need if things went wrong. I spent a lot of time thinking about what could go wrong, and how I would handle each potential problem. While packing, I decided that I would plan for the more probable problems and leave the rest to chance. This sounds reckless, perhaps, but it’s how most people plan their lives.

My probable problems:
– infection
– asthma flare-up
– minor problems with feeding tube or Hickman line (blockage, leaking, minor infection)
– damage to supplies in transit, including electric wheelchair

I really, really wanted to avoid a trip to the local mountain hospital (or even a longer trip to one of the large hospitals in Geneva). I didn’t want to spoil my holiday (or anyone else’s) and would have questioned the sense of future holidays if I’d ended up in hospital, or put my health at risk in order to avoid a hospital admission. I was also extremely conscious that this wasn’t just my holiday, or husband’s.

My health really does dictate almost every moment of every day, but I didn’t want to make other people uncomfortable, make them change their plans significantly in order to accommodate me, or put a dampener on the mood of the group.

In general, I think things went pretty well. There was an early incident, when our hire car got stuck in the snow. On the driveway of our apartment block, of all places! We almost had a collision with a snow plough, as we were trying to get off the road, which was unexpected. Of course, everything was fine, and our friend came and helped us dig some of the snow away from the wheels, so that we could drive the couple of metres onto the heated drive. Picture this: Friend digging at the snow with a paint tray, at 1 am, a French snowplough driver shouting about snow tyres, and our car resolutely spinning its wheels. Much funnier in retrospect!

We didn’t get to bed until 4 am, by the time we had done the necessary medical stuff. That is past my bedtime by a considerable amount.

I developed an infection later in the week, for which I was well prepared. It felt good to be able to do all the right things without having to go to hospital.

The final problem was the flight home: we had booked flights back to City airport, which is an easy taxi ride from home, but hadn’t realised that the plane would be smaller. It was absolutely full, and there was a bit of a kerfuffle trying to find space for the wheelchair.

Apart from those fairly minor incidents, it was a wonderful holiday, and I look forward to more adventures in the not-too-distant future.

There are several things that I would do differently next time, and some that I want to remember, as they made life so much easier. I’ll post them on here at some point, more as a reminder for myself than anything else, but they may be useful for others.

Until next time…

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Stella Young, Disability Activist Extraordinaire

I’m behind on updates again, but they (and you) will have to wait a little longer. Today I want to remember a remarkable person called Stella Young.

Stella died quite suddenly on Saturday, aged 32, leaving the world slightly less bright. Stella’s medical condition, like mine, is one of a handful of ‘heritable disorders of connective tissue’ and it is believed that she died of a ruptured aneurysm. This is quite common within this small group of conditions. The collagen is so weak (in Stella’s case, brittle rather than stretchy) that it allows the walls of blood vessels to stretch in response to the pressure of the blood inside, rather like an old and over-inflated balloon. This stretched area is weak, and can burst. If the aneurysm is in the brain or in a very large blood vessel, it can very quickly lead to death.

I didn’t have the privilege of knowing Stella personally, but I’ve admired her for some time. She had a wonderful way with words, and an openness and warmth that sweetened her strong opinions. I have read and reread many of her articles, wishing that I could have written them.

You may remember the post that I wrote some time ago, in which I complained about the lack of internal filter that some people seem to display (it’s here, if you need a refresher). Stella spoke about something similar in a Tedx talk earlier this year, and made her point far, far better than I could have done.

The video is nine minutes long, and is time well spent, in my opinion.

With gratitude for the life of Stella Young:

 

*Say not in grief, “She is no more,” but live in thankfulness that she was.

Hebrew proverb

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A Fate Worse Than Death

I was deeply saddened to read about the death of Robin Williams this week. I loved many of his films, which have followed me from childhood, through the teenage years and early adulthood, and into my thirties, but I didn’t know him. I can’t claim any connection to him or his family, and it would be hypocritical of me to suggest that I’m heartbroken or grieving at the news of his death. The public mourning and eulogising following any celebrity death always seems disproportionate to me, and even more so in light of the enormously high number of deaths in recent weeks in Gaza, Ukraine, Syria, Iraq, West Africa, to name just a few.

More than the fact of his death, it is the way in which Robin Williams died that makes me sad. I feel sad that he got to the point of feeling that suicide was the best course of action; that there was nothing in life that could make living seem preferable to dying; that the many people who loved him would be better off without him. I’ve thought those thoughts, and have truly believed that the world would be a better place without me in it, but that’s not why I’m writing now. In fact, I’m not really even writing about Robin Williams – there has been so much written already, by writers far more eloquent than me, and with more reason to write about his life and death.

In the immediate aftermath of Robin Williams’ suicide, the media speculated almost incessantly about why he had killed himself. He was ‘battling’ addictions, depression and anxiety, was in debt, and was forced to make films that he didn’t want to make, in order to pay the bills. This speculation all but stopped when his wife revealed that Robin Williams had been diagnosed with Parkinson’s disease.

“Of course!” the media responded. Of course that explains why Robin Williams would choose to end his life.

I don’t want to belittle the seriousness of a diagnosis like this, or to downplay the difficulty of facing a future with the certainty of progressive disability.

What I do want to question is the collective mindset that living with a serious illness or disability is worse than death.

I have had too many people tell me that I’m brave for staying alive despite my physical disability. They express surprise that I seem happy, and something verging on disbelief when I tell them that I am happy most of the time. They tell me that they would kill themselves if they became wheelchair-bound. Another instance of malfunctioning internal filters (that link will take you back to a post I wrote last week).

Do a little thought experiment with me:

Think about the things that you love about life. Think about the people in your life, about your work and your hobbies. Think about the big things that make your life wonderful, and the little things that can turn a day around for you. Think about books that you’ve read, music you’ve heard, places you’ve been, films you’ve watched. Think about your past, about the stories you love to tell, the things you’ve achieved, things that make you smile, and things that make you proud. Think about the future, your plans for holidays and upcoming celebrations, bigger plans (maybe you have a Five Year Plan?), things you want to learn, see, and experience. Now think about who you are, and the things that make you who you are.

What would happen to you if you became ill and/or disabled?

Some of the things above would change, but some of them would stay the same. You might find that you can still find pleasure in life – maybe in travel, food, learning new skills, or in good company. You might still be able to do many of the things that make you who you are, and you may be able to learn, grow and develop in ways you had never imagined.

I don’t want you to think that it is easy (is your life currently easy?) but I want you to believe that it might be possible to enjoy life even if you were to become seriously ill or disabled. I want you to think critically about the media assertion that you would be better off dead, or that it would be perfectly understandable if you killed yourself in such circumstances.

We will probably never understand why Robin Williams decided to kill himself. The reason may have been his diagnosis of Parkinson’s disease, but it might have been something else, or lots of things. It may have been that depression had simply sucked all the life out of his life, until there was nothing left.

To say that life with a disability is not worth living is to vastly oversimplify. It weaves a misty tapestry of fear and myth around illness and disability, telling disabled people that their life is hardly worthy of the name, and telling able-bodied people that they should count themselves lucky not to be disabled. It’s hardly a strong foundation for an inclusive society, is it?

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The Internal Filter

The internet is full of articles, lists and rants about things that one shouldn’t say to a person with a life-limiting illness or disability. I think that many of the things on those lists are a matter of personal experience. I quite enjoy, for example, being told that I look well, but a person who doesn’t yet have a diagnosis might hear that phrase, however kindly meant, as a way of questioning, or invalidating, their suffering.

Most people have an internal filter of some kind. It is used to edit the available thoughts into those that are right for this place; this time; this audience. With varying degrees of awareness, we select or reject the stories, anecdotes, debates, queries and words that run through our minds, allowing some to be spoken, some to be put aside for another time, and some to be censored entirely.

I want to be able to have a conversation with you. I want you to feel able to ask questions, to offer help, to talk about the state of my crumbling and decrepit body, or maybe just about the weather, current affairs, or the latest book you’ve read. I don’t want these conversations to be lexical assault courses, leaving you exhausted from hurdling handicapped, sprinting past spastic, ducking, diving and dodging diagnosis, deterioration, death, demise.

There are so many words, from the dictionary or slang; words borrowed from other languages. There are so many cultural variations, euphemisms and idioms, and so many different people, with different experiences, background, education, and understanding of language and disability. I hate the thought that someone might not talk to me because they’re scared by this minefield of words, and don’t want to cause offence or hurt my feelings.

I hate the idea that I might be ignored and isolated because some internal filter blocks all avenues of conversation, and as a general rule, I would rather people talked to me than not.

There are exceptions to this, of course, and many of you will have heard this story, but I’ll tell it again, for posterity.

It happened one evening, as I was on my way home from work, navigating the underground sea of commuters. I was wearing a suit, stilettos, a wheelchair, and the blank stare of a long day. I paused, considering whether to go out for a drink with friends, or to heed the siren-call of my bed. A man in a suit walked towards me, and I smiled, as most Londoners do when approached by complete strangers.

“I hope you don’t mind,” he began, “but I wanted to let you know that I was having an awfully bad day today, and then I saw you, and realised that in comparison to yours, my life isn’t so bad, after all, so thank you.”

Years later, I still haven’t thought of a response, except the silent wish that his internal filter had killed and buried that thought before he could share it with me.

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