Penguin Bloom

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Penguin Bloom Page 5

by Cameron Bloom


  Of course training for a purpose beyond beating your disability is better still. And this is where sport and friendly competition come into play. I was always athletic and so the transition to competitive sport post-accident wasn’t a great leap for me. But even if you are not naturally a sporty person I encourage you to seek out a physical challenge that compels you to train regularly in a way that produces measurable results. Having simple goals to aim for at each session – such as lifting a little more weight, achieving one additional repetition, greater distance or a slightly faster time – is very helpful when it comes to staying motivated.

  Regardless of the physical activity you choose, it won’t come easy at first. It took me at least two months just to be able to sit in a kayak without tipping myself into the water, which was initially terrifying as I was securely strapped into my seat with a heavy-duty Velcro belt and I feared it might be difficult to escape if I capsized (it actually wasn’t hard at all).

  I didn’t take up kayaking with competition in mind – I just wanted to be out on the water. I loved getting out of the house, I craved the physical release, I enjoyed finessing my technique and going faster and, over time, I gradually improved to the point where new opportunities presented themselves. I don’t want to suggest that kayaking is my new reason for living – it’s not; my family are still the centre of my universe. But paddling has become an important part of my life and, when I consider how far I’ve come since I first got home from hospital, I am very grateful that I gave it a go and that I stuck with it.

  Of course, any activity you enjoy doing is good for you, and the more effort and concentration it involves the better. Boredom is our number-one enemy – when your mind has nothing to do but focus on your discomfort and how angry you are about what has happened to you, then it can become terribly destructive. The pain starts to feel worse and your depression grows. Being paralysed is tough enough on you and your family and friends without your becoming bitter – so if it takes a little sweat and a few blisters to feel better in the long run, then it’s certainly worth it.

  You never know how your desires and appetites will change after your accident. I’m still drawn to the sea; I guess I’m just a water baby at heart. When I first got back in the ocean I thought it would feel wonderful, but it didn’t. Even small waves overwhelmed me and I felt like I had a metal corset around my chest; breathing was difficult and quite frightening. However, over time, I have rediscovered the joys of swimming – I’m not the most graceful frog in the pond, and I haven’t yet mastered diving underwater, but I enjoy the exercise and the strange yet refreshing sensation of waterborne weightlessness.

  Despite my sense of taste being drastically reduced, I still enjoy cooking and baking, though it took a while to remaster my recipes, during which time I dished up quite a few disasters. Call me old-fashioned, but it feels very special to do traditional, motherly things for my family, especially those little treats that make them happy – I’m pleased to say my dad’s apricot slice still gets appreciative smiles from my four men.

  The key to beating boredom and making your new world bigger is to try as many new things as you can, and to accept that some will be wonderful and some a disaster, and to be okay with either outcome. You cannot know what you are good at or what you might enjoy until you try it a few times, so I encourage you to say yes a lot more than no, and to persist even when something doesn’t feel quite right at first.

  One measure of your recovery will be the degree to which you can take on responsibilities beyond merely looking after yourself. Caring for Penguin when she was a sickly little chick was incredibly rewarding for me. Helping her regain her strength and independence helped me enormously on so many levels. As often as I am able, I try to put myself in a position where people rely on me and not the other way around. It could be as simple as making dinner or driving someone where they need to go. It’s not easy, but it does happen more and more, and when such opportunities arise they reaffirm that I have something to contribute to those around me, that I am in control of my life and therefore I can make a difference.

  Life will never be as it was before your accident, and this is not easy for you or anyone else in our situation to accept. Then again, it’s not easy for me to accept that Rod Stewart has sold over a hundred million records, but there it is. Striving against our limitations is part of what it means to be alive. You and I are not the first people on earth to become paralysed and nor will we be the last. Others have gone on to live stimulating and rewarding lives and we can too. Others have also had complete emotional meltdowns from time to time, and we’ll probably suffer our fair share of those as well.

  The truth is that in some ways you are not the same person you were. More than half of your body is now just coming along for the ride. I have often felt like two-thirds of me has died, and I suspect I’ll always have a small storm cloud of sadness and anger lurking over my shoulder. But so long as you have choices, then you are still your own person. No one can expect every day to be perfect, but don’t give yourself extra cause for regret by living in the past and thereby quitting on your present and your future. It’s up to you to choose how you will face the challenges and hard times ahead, and how you will seize the opportunities for creativity, productivity and happiness.

  ~

  To the family and close friends of someone who has recently been paralysed, I am sorry for the sadness and hopelessness you are feeling. I know that when someone close to you suffers a severe spinal injury their intimate circle also struggles with the pain and uncertainty of their situation. Your sense of loss is real, and you need to process this as best you can – don’t be afraid to seek help from someone who has been through this.

  If you want to be supportive, the first step is never to get caught feeling sorry for yourself or wishing things could be like they were before your loved one’s injury. However sad and upset you feel about what has happened, it’s nothing compared to how they are feeling. That said, your workload just tripled and your personal time has been cut in half. Also you now have to be brave and positive around someone who is angry, in terrible pain and deeply depressed. It’s no picnic.

  All I can tell you is to try to communicate normally – do your best to look past the wheelchair to the person you’ve always known and loved. Speak to that person and not the invalid sitting in front of you. Be sensitive to our limitations; don’t rub salt into our wounds by talking about things we are currently prevented from enjoying. In time this won’t be such an issue, but the first year or so is especially hard. Please don’t tell us horror stories about people who have it worse than we do and try to demonstrate how lucky we are. And don’t overuse extreme examples of disabled people conquering impossible challenges such as climbing Mount Everest using only their pinkie fingers, as if that is what we should be aiming for. A little extra encouragement is great, but right now our personal Mount Everest is a lot closer to home.

  The worst time for us is when we first get out of the hospital. There’s an awful moment where the sugary excitement of coming home crumbles to dust when we realise that our cherished sanctuary looks and feels completely different to us from a wheelchair. While stuck in the spinal ward we dream about being back in our own bed, but without all the medical amenities everything is far more difficult at home than we’d imagined. Also, for the first time in many months, we’re now the only paralysed person in the building. The presence of our fellow spinal-injury patients was strangely reassuring, but now it’s just us stuck in a wheelchair while everyone else goes on with life more or less as they always have. Not being able to undertake our old routine results in a horrible sense of dislocation from a life we loved. Watching my husband pick up the slack, and in effect become a single parent for our three boys, made me feel as if I wasn’t a real mother or even part of the family any more.

  Don’t expect us to know everything about our condition, or to be able to communicate this. Do your own rese
arch, find out as much as you can so that you better understand what we are going through. Instead of feeling helpless, try to find ways to make a meaningful difference. My husband, Cameron, brought me a portable DVD player and a selection of movies to ease the boredom of hospital confinement. Prior to that I would lie in bed between visiting hours counting the stripes on the curtains over and over. Additionally he spent a lot of time online looking for better options for medical treatment and resources. Among other things, he tracked down a newfangled German catheter valve that was vastly superior to the ones I had been using and also a cheap, second-hand wheelchair that I could roll into the saltwater at the beach – not exactly the sexiest presents, but they made a very positive impression. Cameron also organised a community fundraising event that enabled us to buy a modified car that I could drive with my hands, and made it possible for us to remodel the bathroom and the kitchen to accommodate my wheelchair. His incredible efforts not only made me feel very loved, but made a real and immediate difference to my quality of life, which in turn improved life for our whole family. He would be embarrassed if I called him my hero, but I do think he is totally awesome.

  Always remember that there is more than one person to look after. We have you, but who do you have? We’re not able to look after your needs and feelings while we are struggling to cope with our disability, so you must make time for yourself and continue to live a rich, full life in order to stay healthy and happy, for everyone’s sake. You need to get out of the house, interact with friends and do things that refresh your body and spirit after a tough day. You are our able-bodied ambassador to the rest of the world, and if you bring back interesting stories and ideas, special treats, kind wishes and an upbeat mindset, then you’ve done a terrific job.

  Distractions are great, so be creative – try to suggest new things and be ready to deliver a little extra push to help get us moving. And by all means pursue new interests yourself – who knows, something that you take up might be a conduit for us both finding something new we love to do. Cameron and the boys got into beekeeping last summer, which was a little weird (especially as Cameron is highly allergic to bees) but also quite wonderful. I wasn’t sure I’d have much of a hands-on role in managing the beehives but I enjoyed the happy drama of it all from day one. When it came time to harvest the honey I was surprised and delighted by how much I could do to help. We all took turns in spinning the frames of honey and I was able to do much of the labelling and bottling with the boys. We then expanded our venture by creating organic lip balm and surfboard wax from the honeycomb, and the boys sold these as well as the jars of delicious organic honey to earn extra pocket money. Not in a million years would I have thought of beekeeping as something I would enjoy, but Cameron’s curiosity delivered a marvellous learning experience for our children and provided great fun for all of us. In fact, bottling our first jars of ‘Bungan Honey’ was probably the first truly happy family memory we created since my accident.

  Above all, I encourage you not to feel hurt when you get caught in the crossfire of us raging against life, the universe and everything. It’s not about you, honestly; we’re simply upset about what has happened to us and how little we can change our situation. We miss our old life. We miss our old selves. We regret all the little decisions and random events that led to us being injured. We hate having wheels for legs and we just want things to go back to how they were, and sometimes this longing seems beyond human endurance. The reality is that we can’t get through this without you, and yet there are times when we hate that this is true. It’s a difficult balance between genuine gratitude and profound despair. We may never be able to fully acknowledge the depth of our pain or how much we appreciate your help, but just remember that your love keeps us alive.

  I am not at peace with my condition – I absolutely detest being paralysed and I cringe whenever I hear the word ‘disabled’. I would give almost anything to stand on my own two feet again. I don’t need to go dancing, or climb a mountain, or win an Olympic gold medal – just to walk down the beach holding my husband’s hand and feeling the wet sand between my toes once more would be enough.

  But whatever the pain and the regret, I know that every day I can share with my family is a gift. Every day presents an opportunity to watch my beautiful boys grow into young men, and for me to grow as a person. And every day brings new hope for a cure.

  To be in the twenty-first century and not have found a cure for spinal cord injury is painfully astonishing. There are almost ninety million people living with spinal cord injury in the world today, and up to five hundred thousand new cases are reported every single year (mostly young men, just entering their prime). According to the World Health Organization, most of these people, like myself, will have a greatly reduced life expectancy, and are also five times more likely to commit suicide, especially during the first year after their accident.

  Thankfully some of the brightest minds in medical science are starting to make real progress in the repair and regeneration of severed and badly damaged nerves as a result of spinal cord injury. Innovative techniques such as spinal cord implants, cell transplants, electro-acupuncture and the advent of epidural spinal stimulators give me great hope that one day I might have feeling and function in my torso and legs again. That one day I might fully regain my independence.

  This once seemingly impossible dream is getting closer and closer. However, the realisation of this important medical goal is entirely dependent on the financial support needed to fund ground-breaking research.

  I’m proud to say that my husband, Cameron Bloom, and our friend Bradley Trevor Greive are each donating 10 per cent of their book royalties from the sale of Penguin Bloom to support the vital work currently underway at Wings for Life UK. Their generous charitable contribution is also being matched by our publisher, Canongate, which I think is an extraordinary gesture.

  If reading our story has touched you then I sincerely hope you will consider making a donation to Wings for Life UK via their official website: www.wingsforlife.com.

  Penguin helped save my life, but your support will help get me back on my feet.

  With love and sincere gratitude,

 

 

 


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