What if we viewed lived experience as an asset? As an asset of professional, economic,…
Christmas is a lovely time of year. I know not everyone enjoys it, and we all feel the pinch after buying presents; but I quite like it. Not because I get presents, not because of the food (especially since I can’t eat, it’s been four years now) but because I like the cheerful spirit that unites us all. We generally come together at this time of year and we get to celebrate. This celebration holds a special meaning for me and my family: Christmas and the New Year symbolise another year I’ve lived, another Christmas I’ve known and another year I’ll live to see.
I loved Christmas as a child, it’s so magical and exciting. I was always a bit odd; I’d open one present and want to play with it, then wouldn’t open the rest of my presents, they literally had to take the toy off me to get me to open the rest. I didn’t understand. I’d open the thing I wanted and then say to everyone “no thank you, I’ve got what I wanted”. I soon learnt how exciting it was to open all of the presents in my sack. I always struggled to get to sleep on Christmas eve. My maternal grandparents would arrive after church at midnight on Christmas eve. They always came for Christmas; they still do, though they don’t stay. Then on Christmas morning mum would wake Vicky and I up (we weren’t early risers) and we would go to mum and dad’s room and open our stockings. We always had a tangerine, usually some chocolates and some other small bits. Then we’d have breakfast, before getting washed and dressed and then we were finally allowed to open our presents. We were so excited. I enjoyed Christmas things at school too, like writing our letters to Santa, the Christmas bazaar and Santa’s grotto. I miss the magic of Christmas that you have as a child. It’s not the same when you don’t believe.
The New Year is a time of change and hope. The end of the year; reflecting on the good points and stepping away from the lows. We make New Years resolutions – whether we stick to them is another matter – and we try to make a fresh start, turning over a new leaf. I’m not one for sticking to my resolutions; the only two I’ve ever stuck to were losing weight when I was twelve and last year’s resolution to make the most of every day.
I can’t believe it’s Christmas again, what a year it’s been. We’ve had some fantastic highs and some deep, dark lows. When I think back on this year, the highs and lows are numerous.
Losing my old dog, Ben, was very sad. He was getting old but it was still a surprise when he collapsed from old age, and we had to make the kind decision to put him down. As the vet said “he’s old and he’s tired” and I knew what I had to do. I am just sad I couldn’t be there with him when he died, that broke my heart. I always imagined him drifting off to the permanent sleep in my arms, but I was too poorly and the vets too small for my wheelchair so I wasn’t able to be there. That still hurts. I miss him a lot. I think he went because he’d done all he could for me and he knew that there was a puppy out there that could do what he couldn’t. And that dog was Molly. If he hadn’t died when he did, we never would have got Molly. He gave us his seal of approval; his song – Crazy by Gnarls Barkley (which was his song because it was on the radio every time we went to see him and when we picked him up) – played on the radio as we set off to pick Molly up, and once we’d got Molly, as mum opened her window a white feather blew in. I knew then that my boy was looking out for me.
What a turning point Molly has been. She’s the best thing that’s ever happened to me. She has completely changed my life; she gave me a reason to fight, a reason to smile and a reason to push myself harder than I thought possible. I worked damn hard just to sit up in my wheelchair so I could take her for a walk. I had surgery not long after we got her and two days later was up in my chair walking her. She brightened up my life. This cute bundle knew instantly how I felt and what I needed and she never failed to make me smile. I hadn’t felt excited at all in the five years I’d been ill, not once, but then Molly came in and I was looking forward to the next day, to the next walk, to the next training session. It felt alien to me because I hadn’t felt excitement in such a long time. I had the best summer thanks to Molly and my mum. Long walks in the sun, taking photos, seeing the butterflies, watching Molly run, play and swim; I was in heaven. We progressed up the levels in training and suddenly I found myself achieving things. I found somewhere I fit in despite my ill health and disability, where people talked to me like a “normal” person and where things were adapted to allow me to participate without alienating me. I felt like part of something, after being lonely for so long. Molly gave me that. She gave me the confidence to join in, the confidence to speak up and the confidence to go out on my own for the first time in 5 years. She has – and will continue to as she learns to be an assistance dog – given me some independence. She is everything I needed her to be. We even won an award, the working partnership trophy at dog training. This year with Molly has been fantastic. Unfortunately my health has deteriorated in recent months and I haven’t been able to get out as much, and I’m back to feeling low, empty and frustrated. Molly can still make me smile, and I push myself for short periods to play with or train Molly, but it’s not the same. Molly is missing me too. Though she’s not missing out, I feel like I’m letting her down. People assure me that I’m not but I can’t help feeling this way. Molly knows I am poorly, she frets if she can’t come and check on me, but she’s desperate for that quality time we used to get together. That’s my aim over the winter months; to get this next major operation out of the way, get on top of my back problems and to have another summer like I did this year.
As touched on above, a huge low of this year has been my health. I continue to deteriorate, getting more and more poorly as the weeks and months go on. I’m currently fighting a few different infections which aren’t responding to even the strong IV antibiotics. These infections are causing me pain and high temperatures, the latter causing hallucinations, amongst other symptoms. We found out my life will be limited in 2012, so we’ve had a lot of tough conversations this year, and we thought things couldn’t get worse; but they have. My bladder completely stopped working, so in September I had a permanent catheter placed to drain it. I never picked up after the operation, and the infection I already had just became more aggressive and we haven’t got rid of it since, as well as adding another infection on top of the ones I already have. My back is getting worse, my joints are dislocating more, my headaches are worse and my body is struggling. Due to a combination of being unwell, in pain and some of the medication I’m on, my brain is very foggy. This is a source of endless frustration for me. I like to read, write, create and learn. At times like this when even getting a sentence down takes hours, my mood lowers and I get frustrated and I generally feel fed up. I use distraction as a form of relief from my symptoms; I can get lost in writing, reading or editing photos, which, though not taking away the pain, distracts me from it. This helps enormously for me. So at times like this when concentration is hard, I’m not as able to distract myself as normal.
I had the most wonderful experience in November. Through Bev at the J’s Hospice, I was put in touch with Together for Short Lives. I became involved with them and am a part of their transition task force “young avengers” group. I was then offered the chance to speak for them at a reception for MPs in the Houses of Parliament. I spent weeks writing and practising my speech, all the while hoping I would be well enough to attend. Fortunately I was; despite being poorly with a nasty infection, which I still have. My mum drove me, my hospice nurse and carer (both from The J’s Hospice) up to London, then we went through security and had a drink in the cafe. The event was held in the “Strangers Dining Room”. I got to mingle and speak with lots of people involved with hospices and MPs, having my picture take with a few of them. By far the most influential was Dr Daniel Poulter MP, Parliamentary Under Secretary of State at the Department of Health. Then it was time for the speeches. I was third to speak. I was fine, no nerves at all, until we got me on the not-so-wheelchair-friendly stage; then it hit me. I’m breathless at the best of times and my heart races due to one of my conditions, so the nerves and adrenaline were not helpful. I took a breath, like I’d written on the top of me speech, and read my speech. My voice quivered at times from the nerves and from running out of breath but I managed the whole 5 minute speech in about 6 or 7 minutes. I didn’t look up as much as I could have though. As I spoke the last sentence, looked up from the page and finished to a round of applause. It felt amazing. We got me off the rather unfriendly stage and, after a few other people spoke, we mingled and then were forced to leave. People were queuing up to talk to me, congratulating me on my speech, asking for copies and wanting to speak to me. I even met someone (name fails me) who funds a lot of research in America into Ehlers-Danlos Syndrome, my primary condition. It was an amazing day; the pain and exhaustion was well worth it. Since becoming involved with Together for Short Lives I’ve done a number of written pieces for them and other charities, including Help the Hospices, National Voices and The National Council for Palliative Care. I am achieving my ultimate goal: to make a difference. I look forward to more projects next year.
|With Dr Daniel Poulter MP, Parliamentary Under Secretary of State at the Department of Health
|Speaking to Dr Daniel Poulter MP, Parliamentary Under Secretary of State at the Department of Health
Another year almost gone, what a year it’s been. Wonderful highs, terrible lows. For the good things, I am truly grateful. I’ve met some wonderful people, both online and in person, and I have fantastic family and friends. In that respect I’m a very lucky girl.
Merry Christmas and a happy New Year to all of my family, friends and followers