The future. Tomorrow, next week, Christmas, next Summer …. these words can be the harshest ones to hear if you live with a medical condition that is destroying your body. You might not make it into this future – and it hurts like hell. I’m going to share with you how I make this hell a happier place to live – so if you want a totally doom and gloom blog then look away now. Happy Back to The Future Day.
My different future.
You probably don’t realise it but people are always talking about the future. Maybe it’s planning a day out at the weekend, deciding on what food to buy for the week ahead, a forthcoming birthday, booking next year’s holiday, eagerly waiting for a favourite film to be released in the coming years.
The future can be the next minute, hour, day …. some people with life shortening medical conditions work though life one minute at a time – particularly when you aren’t ‘well’ or in a lot of pain. Others work to weeks or years – everyone is different.
When you have an impairment, where your friends with the same impairment and age suddenly drop dead – it’s a very different sort of life. My life is characterised by not planning much more than a few days in advance where possible and being prepared to cancel plans on the day if I wake up and feel unwell.
Childhood perceptions of the future.
Parents of children with Muscular Dystrophy worry a lot about ‘the future’- maybe because there is so much emphasis on what a ‘normal’ life should look like e.g. walking upright, achieving at school, becoming an adult, getting married, earning a living etc. Once parents have a disabled child sometimes you can see they immediately grieve for the loss of their child being in their future. I think this is instantly damaging – yes their child might die as a teenager but like me and many of my friends – they might also live to be 40 or even 50!! Oh yes, they might also graduate with honours, get married, become parents and earn a living …. so here is
STRATEGY ONE: Don’t believe everything a Dr or medical book says. They can get it very wrong and lead you to fear what might not happen for many many years and restrict what you do in life.
I wrote myself off – back in 1985 I was 3 years and many falls into my diagnosis. People like me died when they were teenagers. I intentionally never played ‘House’ where you pretended to be a mummy in a make believe future, because that wouldn’t be my future. I’d be dead. What was the point. Yes a 10 year old child can think like that. As the years went by, I got nearer my late teens and didn’t feel like I’d be dead soon … actually, apart from not being able to walk very well and mostly using a wheelchair, I didn’t feel near death at all. So, I changed my mind and decided to live like I’d get to 100.
STRATEGY TWO: Death dates are rubbish – I ignore them! Don’t write yourself off too soon. The future is different for everyone.
When I was in my twenties I asked the Dr what age do people die now? He said in their early 30’s.
When I was in my thirties, I asked the Dr what age do people live to now? He said maybe 40.
Last month I was 40. I have lived long enough to be able to wear my grey hair as a badge of honour and a reminder to stick two fingers up to those Dr’s. I survived. I made it into the future they said I would never had. THAT is a good result don’t you think? Good job I didn’t take their prediction too seriously.
Don’t waste time
Here is another time wasting trap that you can easily fall into – the search for a cure.
STRATEGY THREE: Don’t waste too much time looking for a cure … get on with life with what you have.
Maybe a therapy will be found, maybe not. Don’t spend days scouring the internet for the latest research each week, constantly campaigning for research or trying new drugs. Have a little read then get on with life. I see so many people spending hours and hours every week fundraising for a cure, reading up about research … all the time precious days and hours are wasting away just like your body. I’ve seen someone spends hundreds of pounds each week on a so called ‘miracle diet’.
Snake Oil, targeted at people who fear their future with dystrophy. Diet alone is not going to cure someone – here is my diet tip when time is short.
STRATEGY FOUR: Eat what the hell you like or love and be happy.
Food is a pleasure for me. I love eating curries, chocolate and anything with the word cheese in it. Eating makes me happy. Eating is something I won’t always be able to do because MD eventually stops you being able to swallow.
So to hell with diets. I’m going to eat whatever I want – sensibly. I don’t want to put on weight or clog up my arteries – especially when MD can give you heart problems as well. I don’t want to accelerate my death but I’m certainly not going to hold back on things I love! I will be creating memories when I can no longer swallow and that is my way of dealing with the future.
It’s harder to join in with conversations when your future is unsure.
Imagine this one – you are at the hairdressers and they ask the classic “going anywhere nice on your holidays this year?”. What a conversation killer to say, well actually this time next summer I might be too ill to go on holiday or might even be dead. Even something as simple as ‘Shall I book the cinema tickets for next week’ can be tricky. The true answer would be I can’t commit to going out because my health may take a nose dive. Of course if you are well, you’ve missed an opportunity to go to the cinema with friends, but on the other hand you haven’t wasted money or your friend’s time.
STRATEGY FIVE : We generally only book hotels, restaurants if they have refundable or zero cancellation fees for example. If I am not well then we can cancel without losing money.
STRATEGY SIX: I do more things alone or just with my husband – because there is less pressure to have to attend events when I am not well. I don’t like messing people around if I suddenly have to cancel – and not everyone understands.
The majority of my friends have impairments – and most of them have progressive medical conditions. Some could die at any moment. It’s hard to suddenly see your friend’s name on Facebook with RIP next to it. Normally you wouldn’t be bothered if your healthy friends hadn’t been around social media for a while. But with my friends it often means only one thing … that heart stopping moment where you rush to their profile page, preparing for the worse.
I wonder whether the thing I just shared on social media might be the last – and what will that say to people who might visit my memorial page! What lasting impression will I give people … it’s kind of amusing. Read your last tweets/retweets and status updates and see if that is how you want to be remembered. It might make you think.
So maybe we value each other a bit more and the time we have – e-mails and chats are responded to quicker – tomorrow may never come. We joke more about the future and about being old with our 20 year old friends. Birthdays become very poignant – a celebration of making it to that age and a harsh reminder of how little time might be ahead.
Live life quicker
STRATEGY SEVEN – pack as much into your life whilst you can.
It’s the classic – don’t put off doing something today because you think you can do it tomorrow.
You have to pack into life, the things you want to do or experience, in a much shorter time. It might be something as simple as having a favourite meal or as big as a trip away to somewhere you’ve always wanted to go. Sometimes things are just not possible and you have to have a ‘next best thing’ strategy. I substitute the ‘go round the world’ adventure for a jaunt on google earth or the immersive experience of interacting with world travellers live on Periscope from the comfort of my own home.
So, like Marty in the classic movie we mark today – living without a definite future can be tricky, sometimes we see our image fade before our very eyes. Missing from the albums of future weddings and special occasions. Sometimes it’s amusing and brings up unique conversations. Most times it’s pretty darn good and not set in stone – but I AM disappointed we haven’t invented the hover chair yet ….. See you in the future ….