Thursday, 20 April 2017
One Man and his Catheters: Death sentences and Life sentences. The blue pill ...
One Man and his Catheters: Death sentences and Life sentences. The blue pill ...: Hurrah! I'm out of hospital after a total of 13 nights fighting a bladder infection and temperatures twice steaming scarily over 41 degr...
One Man and his Catheters: Carer creep - The other side of the coin
One Man and his Catheters: Carer creep - The other side of the coin: Before my very eyes - or more poignantly, before my amazing wife's eyes - I am turning into an utterly cliche 1950's man. Just sit m...
One Man and his Catheters: Grief is Like a Box of Chocolates...
One Man and his Catheters: Grief is Like a Box of Chocolates...: So my wonderful, beautiful sister passed away last week aged just 46. She leaves behind a brilliant husband and two great - and I think resi...
One Man and his Catheters: And they all lived differently ever after
One Man and his Catheters: And they all lived differently ever after: Once upon a time (exactly 25 years ago in fact), 12,000 young, enthusiastic and adventurous people descended on a mysterious location one ho...
And they all lived differently ever after
Once upon a time (exactly 25 years ago in fact), 12,000 young, enthusiastic and adventurous people descended on a mysterious location one hour east of Paris. And all these youngsters were magically transformed into 'cast members' by passing through a special little school called Disney University. We came out smiling and laughing, excited about a wondrous new place about to open called EuroDisney. We were immortal.
And lots of us were given jobs like room-cleaning, popcorn-selling and heating up french fries. Some of us got super lucky and landed once-in-a-lifetime jobs like driving a steam train, playing a famous character and dancing in parades, performing as real live cowboy, or looking after VIPs and celebrities.
I landed that last job. I genuinely did have a wonderful other-worldly experience in the company of the likes of Gloria Estefan, Kevin Costner, Clint Eastwood, Eva Gabor. And Michael Jackson. Here's me front left in a garish blue uniform, and MJ hiding at the back after we mobbed him with dozens of characters and a marching band.
Also in the picture is the best Mary Poppins I ever met. She was played by Ali Flavell, cheeky and in character enough to turn to Michael Jackson and ask earnestly, "And who might you be young man?" He loved it...
We were having a whale of a time. Or so we thought.
Ali (aka a supercalifragilisticexpialidocious Mary Poppins) was about to be diagnosed with a brain tumour, whilst I was showing the first, mild signs of multiple sclerosis. Ali underwent some seriously aggressive treatment back in the UK, and made a pretty good recovery after six months of rehab. Meanwhile. I blundered on, oblivious to the ticking time bomb in my brain and spine, the protective sheath around my central nervous system being quietly chipped away by my own immune system.
I wasn't diagnosed with MS until 15 years later, Ali started getting unsteady on her feet over time as the ravages of her radiotherapy treatment kicked in. Both of us are now in wheelchairs.
12th April 2017, Ali and I met again at the 25th anniversary celebrations of EuroDisney (now Disneyland Paris.) Here we are, neither of us any good on our feet, but both happy as Larry. For the avoidance of doubt, I'm the one on the left, and she's the pretty one on the right.
Life goes on. Both of us are married, both of us are parents to two boys. I live a happy, if very different life to the one I imagined. And in times of doubt, I fear very much for what my future holds. I can't talk directly for Ali, but every single pic I see her in, she has a beaming smile. And when I talked to her last week, she was full of plans for the future. And just like 25 years ago, she remains blessed with an enormous sense of fun.
I came away elated from bumping into Mary Poppins again, and more determined than ever to live life to the full. Who knows what's around the corner? We're both rather better off than Michael Jackson after all...
And lots of us were given jobs like room-cleaning, popcorn-selling and heating up french fries. Some of us got super lucky and landed once-in-a-lifetime jobs like driving a steam train, playing a famous character and dancing in parades, performing as real live cowboy, or looking after VIPs and celebrities.
I landed that last job. I genuinely did have a wonderful other-worldly experience in the company of the likes of Gloria Estefan, Kevin Costner, Clint Eastwood, Eva Gabor. And Michael Jackson. Here's me front left in a garish blue uniform, and MJ hiding at the back after we mobbed him with dozens of characters and a marching band.
Also in the picture is the best Mary Poppins I ever met. She was played by Ali Flavell, cheeky and in character enough to turn to Michael Jackson and ask earnestly, "And who might you be young man?" He loved it...
We were having a whale of a time. Or so we thought.
Ali (aka a supercalifragilisticexpialidocious Mary Poppins) was about to be diagnosed with a brain tumour, whilst I was showing the first, mild signs of multiple sclerosis. Ali underwent some seriously aggressive treatment back in the UK, and made a pretty good recovery after six months of rehab. Meanwhile. I blundered on, oblivious to the ticking time bomb in my brain and spine, the protective sheath around my central nervous system being quietly chipped away by my own immune system.
I wasn't diagnosed with MS until 15 years later, Ali started getting unsteady on her feet over time as the ravages of her radiotherapy treatment kicked in. Both of us are now in wheelchairs.
12th April 2017, Ali and I met again at the 25th anniversary celebrations of EuroDisney (now Disneyland Paris.) Here we are, neither of us any good on our feet, but both happy as Larry. For the avoidance of doubt, I'm the one on the left, and she's the pretty one on the right.
Life goes on. Both of us are married, both of us are parents to two boys. I live a happy, if very different life to the one I imagined. And in times of doubt, I fear very much for what my future holds. I can't talk directly for Ali, but every single pic I see her in, she has a beaming smile. And when I talked to her last week, she was full of plans for the future. And just like 25 years ago, she remains blessed with an enormous sense of fun.
I came away elated from bumping into Mary Poppins again, and more determined than ever to live life to the full. Who knows what's around the corner? We're both rather better off than Michael Jackson after all...
Sunday, 9 April 2017
Grief is Like a Box of Chocolates...
So my wonderful, beautiful sister passed away last week aged just 46. She leaves behind a brilliant husband and two great - and I think resilient - boys, 10 and 11 years old. Her death wasn't unexpected, but she struggled on so very bravely at the end. Three weeks in intensive care, with the NHS throwing everything at her and trying every possible solution to help her pull through. Close, so very close, but tragically no cigar.
Ironically, I was for a while in the same hospital, at the same time. Just not in intensive care.I was having my own tough little stay, but paling into total insignificance, as I knew very well I was coming out. Twice I was wheeled one floor downstairs to say what I thought might be 'adieu'. I put on a brave face the one moment she was vaguely conscious, and the last visit I was sobbing and breathless with despair as I knew this was the last time I would see her alive.
I loved her from the moment she was born, and she loved me back. Perhaps mum would correct me, but I don't recall a single cross word between us. Ever. Even when I came back one day and found my Action Man dating her Cindy Doll. Even when the majority of my early girlfriends got the cold shoulder and the death stare because they - apparently - didn't reach the exacting standards required for her brother.
This picture dates from 1988. I drove through Europe with a German friend and my sis joined us when we reached our final destination, Greece. We had run low on funds and were surviving on a diet of olive oil, salt and tomatoes, together with stale bread for dunking, bought cheap or begged at the end of the day from bakeries. Her arrival and shameless fluttering of eyelids and cheeky smile won us endless free helpings of calamari and ouzo from beach barmen desperate to win her affections. None of them did.
I miss her desperately. I'm still sending her texts and when I feel brave, calling her mobile just to hear her voice... I'm crying at the most random of things. Today among other moments it was looking at the blue sky and wondering where she was up there. And Eva Cassidy played on the radio floored me.
Mrs W and I have always talked about two moments that shaped our life together irrevocably. A fire in 1999 that destroyed everything we owned. We were left with some window-boxes, their geraniums and the clothes we were wearing. And my diagnosis with multiple sclerosis in 2007. From the fire, after the initial shock, we learned that material 'stuff' matters so much less than we think. And that only photographs are precious. From my diagnosis we learned to live life to the full, to fill our days with happy memories and to love those special people around us all the more. I usually remember those lessons, though MS frequently manages to get in my way.
Fire? Multiple Sclerosis? Right now they feel nothing compared to the passing of a loved one.
What have I learned from my sister's death? I don't know. It's all too raw at the moment but for now I'm hugging my children more. And through the fog of grief, I'm feeling lucky to be alive, I'm determined to appreciate the little things, and to hang on to all the amazing, happy memories of life with a cheeky little sister.
Ironically, I was for a while in the same hospital, at the same time. Just not in intensive care.I was having my own tough little stay, but paling into total insignificance, as I knew very well I was coming out. Twice I was wheeled one floor downstairs to say what I thought might be 'adieu'. I put on a brave face the one moment she was vaguely conscious, and the last visit I was sobbing and breathless with despair as I knew this was the last time I would see her alive.
I loved her from the moment she was born, and she loved me back. Perhaps mum would correct me, but I don't recall a single cross word between us. Ever. Even when I came back one day and found my Action Man dating her Cindy Doll. Even when the majority of my early girlfriends got the cold shoulder and the death stare because they - apparently - didn't reach the exacting standards required for her brother.
This picture dates from 1988. I drove through Europe with a German friend and my sis joined us when we reached our final destination, Greece. We had run low on funds and were surviving on a diet of olive oil, salt and tomatoes, together with stale bread for dunking, bought cheap or begged at the end of the day from bakeries. Her arrival and shameless fluttering of eyelids and cheeky smile won us endless free helpings of calamari and ouzo from beach barmen desperate to win her affections. None of them did.
I miss her desperately. I'm still sending her texts and when I feel brave, calling her mobile just to hear her voice... I'm crying at the most random of things. Today among other moments it was looking at the blue sky and wondering where she was up there. And Eva Cassidy played on the radio floored me.
Mrs W and I have always talked about two moments that shaped our life together irrevocably. A fire in 1999 that destroyed everything we owned. We were left with some window-boxes, their geraniums and the clothes we were wearing. And my diagnosis with multiple sclerosis in 2007. From the fire, after the initial shock, we learned that material 'stuff' matters so much less than we think. And that only photographs are precious. From my diagnosis we learned to live life to the full, to fill our days with happy memories and to love those special people around us all the more. I usually remember those lessons, though MS frequently manages to get in my way.
Fire? Multiple Sclerosis? Right now they feel nothing compared to the passing of a loved one.
What have I learned from my sister's death? I don't know. It's all too raw at the moment but for now I'm hugging my children more. And through the fog of grief, I'm feeling lucky to be alive, I'm determined to appreciate the little things, and to hang on to all the amazing, happy memories of life with a cheeky little sister.
Wednesday, 22 March 2017
Carer creep - The other side of the coin
Before my very eyes - or more poignantly, before my amazing wife's eyes - I am turning into an utterly cliche 1950's man. Just sit me on a rocking chair, lend me a woolly cardigan, pop a pipe in my mouth and I'm there. Perhaps a pristine copy of the Daily Mail would complete the picture. (Headline of the day - 'For goodness sake stay seated men! Why housework is good for women')
As my mobility, my balance and my dexterity reduce, so does any semblance of independence. I can hobble a few yards around the house with a walker, though I'm only really safe in a wheelchair or sitting down. I can't carry food or drink, I can barely prepare anything, and there are times when I can't get up out of bed. Or more scarily up off the floor after a tumble.
More and more, my wife, and sometimes my children, are edging towards becoming my carers while I just perch in the corner like some feudal Lord of the Manor. I hate it with a passion, while Mrs W and the children bear it with amazing love and patience. Glass of water? Yes sir! Plug my iPad in? No problem! Can you turn the lights on? Of course! What would you like for dinner tonight? Do you need the chair moving? Can I move the walker nearer? Need any help? Are you alright? Need your legs lifting? Put your socks on?
It's all the more painful for me that I have to lord it over the household because I always aspired to be quite the opposite as a husband. I'm seventeen years into a wonderful marriage and when I first met the future Mrs W, I instantly felt I was punching way above my weight. Still do. Almost overnight - this was 1999 - I reinvented my philandering, selfish, slobbish, lazy self to become Mr Modern Man... I cooked most of the meals, I did the washing and washing up, I made the bed and changed the sheets. Hey, I even did the ironing and cleaned the house. She was the beautiful and brilliant career woman, I slotted in merrily as the proud, devoted partner.
Every single one of those chores is now beyond me. Sigh... (I know there's the odd jealous person reading this, but believe me, it hurts). My greatest physical weekly achievement is to sort the sock pile, and even that usually slips to fortnightly.
I think I first became aware of 'carer creep' three or four years ago when the Sunday night job of putting out the bins began to be too much for me. I 'only' used a walking stick at the time, but I was always determined for the bins to be my job and my job alone. Thrilling I know, but as your everyday world is slowly and subtly stripped away, these teeny, symbolic things are important. Every so often those three or four years ago I would find that Mrs W had already moved the bins. It had probably taken her 30 seconds, whilst it would have taken me five stumbly, awkward minutes. And slowly as the months went by, it became an unspoken rule that my wife had assumed that chore. Many, many more have followed.
Carer creep. Perhaps the biggest and most unquantifiable symptom of Multiple Sclerosis is guilt.
As my mobility, my balance and my dexterity reduce, so does any semblance of independence. I can hobble a few yards around the house with a walker, though I'm only really safe in a wheelchair or sitting down. I can't carry food or drink, I can barely prepare anything, and there are times when I can't get up out of bed. Or more scarily up off the floor after a tumble.
More and more, my wife, and sometimes my children, are edging towards becoming my carers while I just perch in the corner like some feudal Lord of the Manor. I hate it with a passion, while Mrs W and the children bear it with amazing love and patience. Glass of water? Yes sir! Plug my iPad in? No problem! Can you turn the lights on? Of course! What would you like for dinner tonight? Do you need the chair moving? Can I move the walker nearer? Need any help? Are you alright? Need your legs lifting? Put your socks on?
It's all the more painful for me that I have to lord it over the household because I always aspired to be quite the opposite as a husband. I'm seventeen years into a wonderful marriage and when I first met the future Mrs W, I instantly felt I was punching way above my weight. Still do. Almost overnight - this was 1999 - I reinvented my philandering, selfish, slobbish, lazy self to become Mr Modern Man... I cooked most of the meals, I did the washing and washing up, I made the bed and changed the sheets. Hey, I even did the ironing and cleaned the house. She was the beautiful and brilliant career woman, I slotted in merrily as the proud, devoted partner.
Every single one of those chores is now beyond me. Sigh... (I know there's the odd jealous person reading this, but believe me, it hurts). My greatest physical weekly achievement is to sort the sock pile, and even that usually slips to fortnightly.
I think I first became aware of 'carer creep' three or four years ago when the Sunday night job of putting out the bins began to be too much for me. I 'only' used a walking stick at the time, but I was always determined for the bins to be my job and my job alone. Thrilling I know, but as your everyday world is slowly and subtly stripped away, these teeny, symbolic things are important. Every so often those three or four years ago I would find that Mrs W had already moved the bins. It had probably taken her 30 seconds, whilst it would have taken me five stumbly, awkward minutes. And slowly as the months went by, it became an unspoken rule that my wife had assumed that chore. Many, many more have followed.
Carer creep. Perhaps the biggest and most unquantifiable symptom of Multiple Sclerosis is guilt.
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