What if we viewed lived experience as an asset? As an asset of professional, economic,…
It’s that time of year again: it’s Christmas time. Where has 2014 gone? It seems like yesterday that mum took the decorations down, and now they’re going to go back up again.
Christmas is a difficult time for many people for many different reasons; for the lonely, the sick, the bereaved. Some with life limiting and terminal illnesses may be celebrating their last Christmas. The bereaved may be facing their first Christmas without their loved one. This festive time is also made more difficult for those of us who are unable to eat. Imagine Christmas with no food; no Christmas dinner, no Christmas pudding, no mince pies, Christmas cake or yule log, no selection tray or chocolate advent calendar. No alcohol, either. We’d give anything to eat along with our families. We join in with as many festivities as we can, but it’s not the same. This year, in replacement of my advent calendar (and to replace a special bauble from one of my CSS tutors which got broken), mum got me a bauble with a rocking horse in it and my name. It’s plastic, so we can’t break it. I absolutely love it, and can look at it hanging up in my bedroom (rather than on the tree where I won’t see it) and appreciate the thought that went behind it. This Christmas I hope to enjoy putting up the decorations – I will “help” (as in supervise) mum putting them up anyway. I also hope to spend a short time sitting up with my family while we open presents etc. so I can join in on Christmas day. I try to sit up every year to open presents in the lounge with mum, Vicky, Grandma and Grandad, but sitting up is such an agonising experience nowadays with my back that I’ve wondered how I will cope. I will do my utmost to sit up for as long as I can – it’s not nice to be stuck in your room while your family eat dinner, talk and celebrate in the other room. I may not be able to eat but I like to see people enjoying food (much to a lot of people’s surprise) so maybe I’ll even manage to recline at the table while they have dinner so I don’t miss out?
My wish for Christmas, other than to enjoy spending time with my family, is to live and be able to have some quality of life in 2015. We have reached the point in the road where nothing more can be done. We need to keep me away from infection as we’re running out of antibiotics to treat them with, and no surgeries unless it’s life threatening as there’s an enormous chance I won’t survive and if I did, my body doesn’t recover from things anymore; I just keep going downhill, never getting back to where I was before. All we can do is to keep me comfortable, keep me at home as much as possible (as I always pick up infections in hospital) and focus on quality of life. I’ve got so many good things going on in my life, which I will explain below, and so many wonderful people surrounding me. I want to cram as much happiness and enjoyment into my life as possible, irrelevant of how long I’ve got left. I want to continue writing and giving speeches, I want to continue going to events, I want to make an even bigger difference, and I want to enjoy walking and training Molly again. Unfortunately, for the latter, I will have to wait until the warmer weather as my body cannot cope in the cold (even in thermals), but the rest I am doing now and I want to be able to continue doing them – and more – in the future.
Life is just getting good. After seven years of being ill, my life finally has a purpose and a meaning. I now know why I was put on this earth and given this life. I’m working really hard and it’s paying off. I’m going to conferences with and speaking to very influential people in the health and hospice care fields (especially children’s palliative and hospice care), meeting MPs and important professionals, speaking for charities, writing pieces for charities and projects, being a voice for the life limited/terminal, the disabled, the chronically ill and for those without a voice, most frequently speaking on behalf of life limited young adults, and doing media work for charities. In addition to these, I recently took up the role of trustee with the Pseudo Obstruction Research Trust (which I’m really excited about!), hoping to bring my skills to the charity and raise awareness and much-needed funds. So many exciting things happening and more chances to make a difference. As a supporter of mine and someone who has given me many opportunities put it, this is my life’s work. It may not be the life I expected, and I am not the doctor I had hoped to become, but I am making a bigger difference than I ever could have had I been well and become a doctor. The desire to help others and make a difference remains the same, I’ve just had to channel it in a different way.
Soon after Christmas we’ll be celebrating the New Year; what have you got planned? No doubt we will be at home, relaxing and welcoming in the New Year together. What about New Year’s resolutions? My New Year’s resolutions are pretty much explained in this post: to continue making a difference and to live with some quality of life. There are other things however, including to write my book, to grow my blog (I’d love to reach 100,000 views by this time next year – I’m at 63,000 currently) and update it regularly, to pass Molly’s Level 1 in assistance training with Dog A.I.D., to improve my public speaking, to organise a fundraising event, to continue raising awareness of Ehlers-Danlos Syndrome and pseudo-obstruction, to continue campaigning to improve the transition period with Together for Short Lives, to continue supporting and raising awareness of the charities that support me and especially to raise awareness of the Pseudo Obstruction Research Trust and to help the charity to grow.
Above all, and by far the biggest resolution and aim for 2015, is to make the most of every day – more so than we do already. Nobody knows how long they will live, and things can change so quickly, but we know my time will be limited. We, as all people should, need to appreciate every moment we get and to fill our lives with love, happiness and laughter. I’m not saying live each day like it’s your last, but appreciate and enjoy every day you get and count your blessings. As I said, life can change so quickly, in an instant even, and never did we expect we’d be in this position seven years ago when my health started to decline. We’re left thinking this year, “Could this be my last Christmas?”; we don’t think it is, but my body is so frail and fragile that a simple infection could overwhelm me. It’s a scary thought. We are going to make more of an effort to enjoy every day, to celebrate every holiday and milestone, and to appreciate the time we can share, living, loving and laughing. I urge you to do the same.
P.S. – Let people know how much you love and appreciate them every chance you get.