How a “great and terrible hardship” changed the way I look at life.

Sam Bloom suffered a devastating accident while holidaying in Thailand in 2013. Her injuries were so extensive she became a complete paraplegic, unable to feel below the chest. With her three  sons and husband by her side, she undertook the arduous process of rehabilitation.

A chance encounter with an injured magpie chick provided the family with welcome distraction. The magpie was nicknamed ‘Penguin’ Bloom. Little did they know this bird would change the family’s lives forever. 

As part of her rehabilitation, Sam (an avid sportswoman before her accident) took up kayaking. With the help of Penguin, and the rest of the family, she was able to rise to the top of competitive kayaking and competed in the Canoe World Championships in Milan in 2015.

If you or someone close to you has suffered a serious spinal cord injury and been paralysed, then please know that what I now share with you is brutally honest. You deserve the truth and I promise you nothing else. I cannot pretend that I’m happy with how things have turned out. I’m not. But that doesn’t mean I’m not a happy person, or that I’m not glad I’m still alive. I have enjoyed a great many things since my accident and I believe there are better days ahead. That said, I don’t want to gloss over what has been and continues to be a great and terrible hardship.

Without the love and support of my husband and our children, our immediate families and our dearest friends (especially Penguin), I’m not sure I would still be here, and I know I wouldn’t be doing as well as I am. Words can’t express how grateful I am for their love, or how much I love them in return.

My accident has cast my entire life in sharp relief. I now realise that no one had ever said anything truly hurtful to me until I was told I would never walk again. In that sense, at least, I have been blessed. I am also fortunate, courtesy of my head injury, not to have any recollection of my fall or its immediate aftermath, so I have not had to relive that horror again and again.

Penguin Bloom: the bird that saved a family. Post continues after video. 

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My disability has made me aware of a level of suffering that was unknown to me and, while I would not wish this knowledge upon anyone, it has made me mindful how much compassion is sorely needed in this world. In a strange way my accident has made me realise how lucky I really am – it has given me the chance to see the very best in my husband and our children, even while I was at my lowest point. These are beautiful insights for which I am grateful, despite their appalling cost.

Being paralysed is a little like waking up from a coma to find you are 120 years old. Your family and friends want you to be happy that you are still alive, but everything you do is very slow and very painful, and so much of what you enjoyed most, the things that actually made you feel alive, are now quite impossible. Perhaps if I was actually 120 years old a lifetime of happy memories might sustain me, but I am young, and I had every reason to believe that the bulk of my life adventure was still before me. There is so much I want to do, so many plans, so many dreams that now lie in pieces at my feet. My numb and useless feet.

Becoming a paraplegic has not been an unexpected gift; the new perspectives granted me cannot be equated with a great spiritual awakening and I don’t feel this experience has made me a better person or given me newfound purpose. There have been many occasions when I have felt so bitter about the bizarre accident that left me like this that I wanted to vanish into the wilderness and scream my lungs out. These days I don’t have nearly as many dark moments, but I still have them. To those reading this who are just beginning a nightmare process of recovery and rehabilitation like that which I have been through, I know there is little I can say that will mean very much to you right now. I was so consumed with anger and regret after my accident that almost nothing positive got through to me. I was certain I would never smile or laugh ever again but thankfully, in the end, I was proved wrong.

I don’t pretend to know everything about spinal cord injury, and I appreciate that everyone’s situation is unique. But I can tell you that the icy cold fear in your heart that you will always be a freak, that the best of your life is over and that the real you is gone forever … that’s all normal. The thoughts of suicide and wishing you were dead – that’s normal too.

Paddling A photo posted by Sam Bloom (@samjbloom) on Sep 27, 2015 at 6:43pm PDT

There was a long spell when I nursed an irrational hatred for almost everyone and everything related to my paralysis. I was angry with the entire nation of Thailand, so much so that I couldn’t even stomach the red curry with beef from our local Thai takeaway that was once one of my favourite things. It sounds crazy, I know – but pain, regret, grief and frustration make you a little crazy. Likewise there will be a period when almost anything anyone says or does will make you feel incredibly sad or angry or both. For a while I became toxically jealous of everybody who continued to lead a normal life; watching girls running down to the beach with surfboards under their arms would reduce me to a puddle of angry tears. I knew it made no sense and wasn’t remotely healthy, but I still felt this way.

Talking through what you are feeling can be helpful, if you can bring yourself to talk about such things. After a glass of wine I can be quite chatty but I am naturally very quiet, so I found that keeping a private diary of my highs and lows was a good way to put things in context and deconstruct my negative feelings. But though this was helpful, I found that nothing is better than saying things out loud. There’s just something about putting your fear and your anger into words that robs these horrible feelings of their power over you.

In this regard, Penguin was a wonderful sounding board for me. Penguin always listened attentively without becoming visibly upset and never accidentally said anything thoughtless in response. My swearing might have made the angels blush, but I was able to vent all my frustrations and spit out all the vicious, ugly things that were eating away at me and know that I was harming no one. Flushing the emotional venom out of my system helped me feel better and put me in a far more positive mood around the many wonderful people who were doing their very best to help me.

Of course, not everyone has a bird like Penguin, and there is a limit to what one can communicate to people who have not experienced what you and I are now forced to endure. Many intelligent and compassionate people you love and admire have no idea what being paralysed means – they assume that being confined to a wheelchair is as comfortable as can be. They cannot comprehend the constant pain, hopelessness and humiliation that are an everyday, every hour, every minute reality. Don’t be angry with them, it’s not their fault – no one talks about this stuff.

 

Morning training session A photo posted by Sam Bloom (@samjbloom) on Jul 27, 2015 at 6:42am PDT

It’s in your best interests to seek out and follow the best medical advice. But that is still not enough. The scope and rate of your recovery is entirely your responsibility. You have to tackle your symptoms and limitations on your own terms, and the harder you work at this, the better you will feel. There is no magic bullet, no miracle and no shortcut.
Despite the devastating physical nature of our injuries, the battle going on inside your head is the hardest to overcome. When it comes to making positive progress following spinal injury I believe eighty per cent is mental and twenty per cent is physical. Anything you can do to improve your attitude will help you move beyond being a depressed blob rolling around in a wheelchair. Conversely, anything that sets you back mentally can quickly halt your progress and even send you backwards.

A few fundamental things have helped me the most since leaving hospital. The first is having a supportive inner circle, by which I mean your immediate family and your closest friends. My inner circle was just my husband and our children, my mum and my sister. That’s all. Over time I began to include some close friends, but I kept it small.
It may seem counterintuitive, in terms of getting the support you need, but do not feel obliged to let all your friends and acquaintances in while you are navigating the earliest part of your recovery. If you’re not careful you can be trampled by a herd of weepy well‐wishers. Definitely try to stay clear of people who feel it is their job to say vapid, cheery things and repeatedly call you an ‘inspiration’ – they will quickly drive you insane and leave you feeling exhausted, angry and withdrawn.

Let friends know that you are grateful for their kindness but right now you need personal space to focus on coming to terms with your new life. If they insist on helping, give them simple tasks: picking up the shopping, taking your kids to soccer practice or baking a casserole – something practical that makes family life a little easier and helps maintain the connection with those you care about without depleting your energy reserves. When the time is right you will be ready to reconnect with close friends, and all those who are true friends will understand and respect this.

Switzerland

A photo posted by Sam Bloom (@samjbloom) on Jul 26, 2015 at 6:19am PDT

One of the most difficult things for me to overcome was my acute embarrassment. It may sound ridiculous but it’s true. I hated looking strange, I hated not being able to dress how I used to dress, I hated thinking old friends were judging me or pitying me or comparing me to my former self. There were occasions where I felt disgusting – like Death in drag. I also constantly worried that, having no urinary sensation whatsoever and having also lost my sense of smell, I might have wet myself and not even known about it.

Initially I found it far easier to make new friends or be around complete strangers, people who only knew me as I am now, not as I was. This may seem a pathetic cop‐out, but it highlights our basic desire to be treated normally. Some well‐meaning friends cannot help but look at you as if you are a broken child who needs babysitting. Nor can they resist trying to cheer you up by prattling on about shared experiences from the good old days before your accident, which can be deeply upsetting.

It’s easy to become withdrawn when you are in pain; your self‐esteem has been shattered and your mobility is reduced to almost nothing. But while I needed more personal space than most people realised, I also learned that getting out and about was essential to being happy and making meaningful progress. You certainly don’t have to be paralysed to become a self‐obsessed bore, but it helps. Even though it’s far harder to get out and experience interesting things than it used to be, this is something that I wished I had pursued earlier. I urge you to do the same.

Looking back I now realise that socialising became easier about two years after my accident. It was no coincidence. By then I was committed to competitive kayaking and I had something to feel excited about and look forward to. I didn’t realise this at the time but kayaking gave me back a great deal of my self‐confidence and was the key to having something fresh and fun to talk about. This in turn added a positive dimension to all of my social interactions and expanded my circle of good friends.

Another fundamental that helped me was basic physical strength and fitness. It sounds obvious but early on all I could think about was the physical function I had lost, and how hard everything seemed. Over time I began to appreciate that increasing my physical strength and endurance distracted me from the constant pain I felt and also made everyday tasks easier, which in turn gave me more energy to commit to new and more interesting challenges. Not having the muscle to power your wheelchair over a wet towel your kids have left in the hallway is a sure way to feel feeble and pathetic. So believe me when I say that anything you can do to improve your functional flexibility, mobility, strength and coordination will prevent you from wasting time, effort and tears on petty domestic endeavours. You have far better things to do.

 

My favourite pic of @penguinthemagpie. Thanks @cambloom x A photo posted by Sam Bloom (@samjbloom) on Jul 5, 2015 at 8:15pm PDT

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.

A photo posted by Sam Bloom (@samjbloom) on May 8, 2015 at 8:32pm PDT

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.

Warming up

A photo posted by Sam Bloom (@samjbloom) on Apr 19, 2015 at 10:58pm PDT

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.

 
Sam and her kids. (Screenshot via ABC TV)

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 research, 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, 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 organised a fundraising event that enabled us to buy a modified car that I could drive with my hands, and also 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.

 

A photo posted by Sam Bloom (@samjbloom) on Jun 8, 2014 at 11:02pm PDT

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.

My coach & I

A photo posted by Sam Bloom (@samjbloom) on Jan 26, 2014 at 9:57pm PST

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 SpinalCure Australia. Their generous charitable contribution is also being matched by our publisher, HarperCollins Australia, 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 SpinalCure Australia via their official website: www.spinalcure.org.au.

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

With love and sincere gratitude, Sam Bloom.

 

This is an edited extract of the book "Penguin Bloom: The odd little bird who saved a family" by Cameron Bloom and Bradley Trevor Grieve, Harper Collins. ($27.99 on sale in bookstores and online)

 

 

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