Dear Spinal Cord Injury

13 – 04 – 1998

Dear Spinal Cord Injury

Twenty-six years ago you hijacked my beautiful active body and took over my perfect life.

Before you, life was good. I was happy and I was loved.

I was loved by a handsome husband and my beautiful baby boy.

I was loved by my own family and an extended family of in-laws.

I was loved by my teaching colleagues and a class full of 8-year-olds.

What more could a woman want?

But then you came along and ruined it all.

I hate you because you took away all of the above and changed everything in an instant.

I hate you because you stripped me of my privacy, independence and dignity.

I hate you because you changed the lives of all those close to me.

I hate you because my life revolves around you and is constantly ruled by pees and poos.

I hate you because you cost me a fortune and leave little left for comforts, fun and treats.

I hate you because you make my everyday life so hard – physically, emotionally and financially.

I hate you because I’m different and society see me as weak and vulnerable.

I hate you because you keep me from going places and deny me a normal life.

I hate you because you mess with my mind and make me fight every day to stay positive.

I hate you because this dragon can never be slayed and is sometimes impossible to ride.

I hate you because… The list is endless.

For my own sanity, I try to love you…

I love you for the time with my boy, Chad Ross Todd.

I love you for bringing me real unconditional love and marriage to my Sexy Legs.

I love you for growing my faith through all my special Earth Angels in our community.

I love you for proving how brave, strong and resilient I can be.

I love you for turning my life into an inspiring story which led me to proudly publishing a book.

I love you for bringing special people into my life including Tebello.

I love you for all the life lessons – harsh yet valuable.

I love you for showing me empathy and compassion, enabling me to help others.

I love you for keeping me humble and grateful.

I love you for making me appear calm and serene even though I’m not.

I love you for… Blah blah blah!

No, Spinal Cord injury… Fuck You!

I still, and forever will, hate you.

I wish I could climb up onto the roof tops and shout it out LOUD.

But here’s a big fat middle finger (I can’t move) anyway.

Sincerely,

Your Slave.

**Disclaimer**

I detest swearing on public platforms. I tried to find another word but there isn’t one. Please forgive me. Maybe, just this once, you will shout it out loud with me. Or, at the very least, jab that middle finger high up into the air – just for me.

This Is Why I Live Here

I wrote this in response to a question on a local Facebook page about what it was like to live in NELSPRUIT. The response has been overwhelming so thought I should share it here too.

Mbombela (Nelspruit) is nestled in a valley and surrounded by mountains in the scenic Lowveld of the Mpumalanga province, South Africa. We are Da Bomb, de Spruit, Nellies, Naspoti, the Slowveld.

For me this is HOME.

It is a city of contrasts, a place which can swing you from joy to despair within space of a heartbeat. Close to nature, it’s beautiful and cruel. It will give you joy and bring you sorrow. It steals your worldly goods and holds your soul to ransom. It will test your faith and revive your belief in humankind.

It has the ability to make you feel like you’re living out in the sticks but its offerings compete favourably with any bucket list destination in the world. It has the bush, the mountains and the sea not far away. It will give you adrenaline filled experiences and bring about a deep sense of peace. It will push you across the borders into Swaziland and Mozambique to seek third world African adventures but it will pull you back home again like the tide of the ocean. It will force you to take long road trips to get to other provinces like Gauteng, KwaZulu Natal or the Cape because our country’s most beautiful international airport offers flights only afforded by those earning top dollar. Its suburbs are a mishmash of mansions and townhouses unless you’re living on an estate.

The weather is hot (especially in summer) but the people are cool no matter the season. It has some smelly winter mornings (thanks to Sappi – or so the urban legend goes) yet the air is clear and crisp. The humidity can make you feel weak with exhaustion but the fresh air leaves you feeling energised and strong. At the first sign of cool weather it’ll bring out its boots, leather jackets, heaters and electric blankets but brag about its lovely warm winter weather to anyone who’ll listen.

The old Nelspruiter’s (and I don’t mean only those with grey hair, I mean the generations who’ve been living here for a gazillion years) have such a strong bond that many outsiders refer to it as a clique they struggle to get into, yet everyone you meet is friendly. It buzzes as one of the fastest growing places in the country but it has a real laid-back, holiday feel. Construction is happening everywhere but there aren’t enough houses. It loves its animals and yet almost all rentals say, “No pets”.

Everything is expensive (blamed on transport) but you don’t need a lot of money to get outdoors and have fun. It’s not very wheelchair friendly but it has a deep compassion for disabled people. It has the worst drivers in the country (except if you’re in a Citibug), but peak hour traffic lasts a half hour max. It’s quite Afrikaans, yet is more than willing to speak English and embrace all cultures. It welcomes tourists from across the globe but its secret love is the Portuguese from Mozambique.

Jobs are scarce but there are many entrepreneurs. Salaries are low unless you are a specialist. Everybody complains that there is no work and yet service is so slow. Fresh produce is plenty but pricey even when bought from stubborn fruit vendors who insist on sitting in full sun on the side of the road instead of in the pavement shelters built especially for them (Nobody puts those Gogos in the corner). The fruit is apparently bought at the market but allegedly stolen from farmers. There are lots of shops but they are far apart even in the mall. People seem selfish but there are many earth angels.

It’s a city with a small town mindset. It has talented artists, musicians, authors and poets, but the corporates prefer to pay double the price for someone from Cape Town or Johannesburg. It has the best doctors and private healthcare facilities which have won awards and attracted people from all over southern Africa, yet many locals still prefer to travel to Johannesburg or Pretoria for treatment. It complains that it has too few restaurants with fine dining but it prefers to support the Prego lady in her mobile food truck in the car park. It makes the best peri-peri slap chips in the world but its exact recipe is as foreign as KFC. It grumbles about a lack of culture but when special cultural events are organised and tickets given free, it’s poorly attended but tickets for a Nataniël show at full price are sold out in minutes and the hall is packed.

The car parks filled with 4×4’s will mislead you into thinking that everybody lives on a farm or in the bush when the majority of us live in town. It has too many car guards who are brilliant at directing you in and out of parking spaces (even your husband would be proud) despite not one of them ever being behind the wheel of a car or knowing how to drive. It has wild horses close by which we all claim as our own and they’re the only horses in the country to have more rights than residents even on the main road. It has marathons with hills that will make your muscles scream in pain yet those same hills will give you some of the best views on earth enabling your spirit to soar with joy.

It’s surrounded by places with rivers, dams, waterfalls, cliffs, incredible rock formations and caves where life-size dinosaurs will lead to more questions than answers about the origins of our universe. It has homes with magnificent views yet all its restaurants overlook busy car parks and roads. It has a graveyard dead in the suburbs where a single plume of black smoke from the crematorium serves as a stark reminder to live life now. It will turn a blind eye to many injustices yet stand together to save one magnificent tree on the N4 highway. It will advertise events months in advance and hardly anyone will pitch or advertise it a day before and be overwhelmed by the rush – it all depends on the mood or weather. It chooses to display metal buffalo, elephant, giraffe and other disproportionate animals (in the name of art) when the real thing can be seen on a day trip into the Kruger National Park.

People complain about the noise but marvel at the tranquillity. It gets festive most Fridays at its local joints and even more so during its famous Innibos Festival but it also gets so quiet some days that we wonder if there’s still life out there.

In politics it has a left-wing and right-wing and something in between but when there’s a crisis the wings somehow work together to fly in perfect formation. It’s got heroes who don’t need capes to do good and haters who sit behind their computer screens trolling everyone on social media. It’s extremely proud of its unique stadium yet, when in company, sport lovers cheer loudly for teams from other provinces but will secretly still support the Pumas and Mbombela United. It has one of the best fashion design schools in the country yet anything from high heels to Crocs go for a special occasion. It has women in glamorous evening dresses at a braai and men in jeans or a khaki shirt at a black-tie event.

Like everywhere in SA, there’s crime but our private security companies are passionate about keeping us safe. It has stories of Isis terrorists in town and across the border yet the only real terrorists it sees are the mosquitoes. It can get lonely yet you will always bump into someone you know when you’re out and about. It will not fall over itself to make you happy, that’s your own responsibility, but the memories you make here will last a lifetime. There’s something in the water that keeps you coming back. Once you are settled, leaving, like a drug addiction, will kill off the best things in your life as well as the worst. Lastly, and most importantly, YOU are welcome here.

 

#imstaying #ImStaying

Dark Days and Light Bulbs

 

 We’ve all been through dark days. It’s an inevitable part of living with a disability. And I don’t mean the (often circumstantial) depression that befalls many of us for a period after a sudden, traumatic injury, the one that leaves us reeling in shock, the reality of not being able to do things like we used to. I’m talking about the dark days when everything just becomes too much or when things go wrong like a care assistant not pitching for work or a sudden bladder or bowel issue. It not only messes with your body, but it messes with your head, stripping you of your usual positive attitude. Dark days can creep up on you sometimes, uninvited and unexpected, and leave you feeling drained, too tired to fight the demons in your head. For me, mind wars are a daily struggle. However, it’s important to have spare light bulbs to help you through the darkness.

Some choose to ignore the dark days and keep busy. Others like to wallow in self-pity and stay in bed for a few days. However you choose to deal with it is your choice. But the important thing is that you are able to pick yourself up again and move on.

I usually have a good cry and then pray. Ask for help but also be grateful. Many are denied the opportunity of a second chance at life. Look yourself in the mirror and say, “I can do this.” You are brave and strong, otherwise you would never have survived this long.

Take a bath or shower, even if it’s only a bucket of water over your head. There’s no better feeling than having clean hair and a fresh body. Put on your best clothes. Every day is special.

Listen to music. Pump up the volume. Sing. Dance. Even if it’s only in spirit.

Escape in a good story. Find a movie. Read a book. Listen to a podcast or audiobook. There are hundreds of sites where you can stream or download free.

Write. It’s cathartic. Bleeding onto a page or computer screen helps to get it all out and process your feelings more objectively.

Exercise. Do what you can. Even passive exercise gets the feel good endorphins going.

Get out of the house. Cabin fever is real. If you don’t have transport, get out of the house. Sit in the sun. Listen to the birds. Smell the roses. Watch the clouds. Be still. Silence isn’t always empty. Sometimes it’s full of unexpected answers.

Find a companion, even if it’s a dog or another pet. They’re a huge source of comfort. Having a pet and being responsible for their well-being is a great distraction.

Pamper or spoil yourself. Bribe somebody to give you a head or neck massage. Buy yourself a treat. Chocolate and bubbles are my best.

Plan an adventure. Something to look forward to helps keep the calendar interesting. Adrenaline is a great motivator.

Get creative. Find something that stimulates your creative juices. It can be better than any therapy.

Stimulate your mind. Do a word or number puzzle.

Help somebody else, even if it’s just to listen. It does wonders for your self-worth.

Laugh. Humour is the best healer. Stand-up comedy on YouTube has kept me laughing for days.

Open up. Speak to a friend. Surround yourself with positive people. There are many support groups for your specific disability on social media. You are not alone.

If you can’t find a light bulb to get you through your darkness, get help. Go to your doctor or mental health practitioner. Depression is serious.

Never give up.

A lotus flower pushes through the dark, murky water to seek the light.

Which light bulbs do you seek in your dark days?

Family in Crisis

 

Photo by Pixabay on Pexels.com

Everybody needs help to get through a tough time. Many of us will turn to family in a sudden physical, emotional or financial crisis. They are usually the people you can count on most. If you’re lucky to have a tight knit family, they’ll likely drop everything to help you out, day or night. We all need a solid support structure for when things go wrong. A cushioned inner circle is a must-have – it’s soft place to fall. Whether it’s family or friends you need a handful of people you can trust implicitly with just about anything.

Society seems to expect that we remain strong through adversity and stay in control of our lives, so when things go wrong we might feel ashamed or inadequate. Sometimes pride keeps us from asking for help even from professionals because to us they’re strangers. So we attempt to keep our troubles quiet and inadvertently place higher demands on specific family members or close friends.

A crisis can spiral a family into chaos. Boundaries become blurred. Relationships begin to unravel. Emotional turmoil has the potential to turn us nasty and we often treat the very people we claim to love most in the world worse than we’d treat any stranger. We take our fears and frustrations out on the people closest to us. Perhaps it’s because their love is unconditional? So we take them for granted, albeit unintentional.

No family is exempt from those shameful times when everybody is weary, emotions are running wild and things get out of control, sometimes a consequence of too much alcohol around the dinner table or a long history of complicated family dynamics.

It’s important to try to keep calm and stay patient with one another in times of crisis. Show that you still value the relationship by being willing to do what it takes to sort out the conflict. However, be aware that some relationships grow so toxic that it’s better to just let go.

If you’re the one in crisis, take a day at a time. Don’t sabotage yourself or your relationships by refusing to accept help, but understand that it may only be for a limited period. If you can, get professional help to curb the strain on your nearest and dearest. Try to regain control of your life as soon as possible by making your own decisions and, most importantly, take responsibility for your own well-being.

If your family member is suddenly paralysed (for example), it’s important to remember that although unconditional love, care and support is needed, you should resist the temptation to take over completely. Respect their decisions or choices no matter how difficult it is to accept. Avoid unnecessary conflict. Damaging good, healthy relationships beyond repair is not worth it.

Most importantly, be kind to yourself and to those you love – always.

PS… Some friends will always be friends because they know too much – they may know even more than family.

 

Supermen

Photo by Pixabay on Pexels.com

A few years back I found myself on an online dating site. I know, crazy, right? I mean, I’m paralysed from the neck down… What was I thinking? Luckily for me my story had a fairytale ending.

I learnt a lot about men during that period but probably the most poignant was….Not all men are dogs.

In fact, very few are. Shamefully, I’d allowed my past hurts and disappointments to destroy trust and I’d unconsciously put all men in the same box.

The truth is that men are just as vulnerable to being hurt. As I heard story after story from heartbroken men behind their computer screens, I came to the conclusion that some women can be blatantly mean and nasty. Many take the men in their lives for granted and treat them terribly.

Men have similar needs and desires to any woman.

So exactly what is it that men want from their lady in a relationship?

 

Respect

Isn’t that what we all want? It doesn’t mean you have to be like, “Yes sir. No sir. Three bags full sir.”

Mutual respect for one another is probably the most important factor in any relationship. Respect is defined differently by each of us. For me, respect is about choosing to accept your man, flaws and all, and still feeling appreciation for his uniqueness, talents and insights. It’s about making him feel worthy. Love is wonderful but respect is the glue that cultivates deeply connected and lasting relationships.

Be aware of being overcritical. Nobody is perfect. See him as your equal and don’t try to mother him. He’s not a little boy.

 

Physical Intimacy

Sex is important, but intimacy extends beyond genitals. Being an athlete in bed has nothing whatsoever to do with the quality of a committed relationship. Relationships based purely on the physical will eventually crumble because no human is guaranteed a life without encountering health issues, financial problems, family troubles, spiritual or philosophical differences, social dilemmas or disability.

Men probably need a sense of sexual connection a little bit more than women, but it can be from something as simple as physical touch and affection. Let go of what you think sex is supposed to be and consider what it can be. Kissing, cuddling, talking and fantasising are not compromises. These “alternatives” have more erotic potential than you think.

Be yourself and let things happen naturally. Allow your relaxed and fun side to shine through. Men love confidence and when you can let things roll off your back. Attraction is not all about looks. It’s also about the attitude you have. A positive attitude is attractive while a negative attitude can be a huge turnoff.

Ladies put your arms around your man and squeeze him tight even if it’s for no other reason than simply because you can.

 

Emotional Intimacy

Emotional intimacy is a combination of personality, passion for life, intelligence, opinions, sense of humour and shared interests. Any relationship without a meaningful spiritual and emotional connection will not survive any of life’s curved balls.

Silent treatment does not work. Trust me. It might sound like a cliche, but communication is the key. Communication also involves listening. It’s not just about talking. Some women want to talk things through endlessly and men don’t respond well to that.

Typically South African men have been brought up in a “Cowboys don’t cry” society. Bottling emotion up inside can turn us into a pressure cooker ready to explode which isn’t good for anyone. Men don’t often show their feelings easily but he does need a few people he can open up to. Give your man a safe place to fall. Be his best friend and allow him to talk, share his emotions and, most importantly, cry.

Men have infamously tender egos. Society places a lot of pressure on them to provide for their families and in this economic climate that’s not always easy. So a pat on the back from his lady will encourage him to continue to give his best to his family in every way he can.

Remember to keep him in the loop and involve him in plans that you are making with family and friends. Being able to communicate and compromise is the mark of a mature relationship.

 

 Space

Giving your man space doesn’t mean that he needs to go to a pub with the boys every night but he does need time to relax. Maybe he needs to play sport, go into his man cave or stay in bed with a book or skop-skiet-en-donner movie for a couple of hours a week.

Men tend to think in a more compartmentalised way than women. They have the unique ability to switch off. So if you ask your man what he’s thinking and he answers, “Nothing.” Then let him be for a while. Don’t nag.

 

Love with abandonment, generosity and kindness. Never take love for granted.

 

I’d love to hear from you. What do you think men need from women and their relationships?

Freewheeling

The sky was grey and brooding with a faint smell of rain in the air. Still it felt good to be outdoors. My Sexy Legs was on his stationary bike training for an Ironman event. We chatted like we always did when he pedalled at home but that day I was more pensive than usual.

There was a lull in the conversation. The squeak of the pedals seemed loud – too loud. A fly buzzed and bounced off my cheek. I shook my head, sucked in a breath and blew hard after it as it flew away. The sticky ones were fearless though. They always came back.

I looked to Sexy Legs for sympathy but he hadn’t noticed the fly or my discomfort.

His eyes were glassy, cheeks slack. He was in the zone – that pain zone sport fanatics crave. I remembered it well. That burn in the muscles was exhilarating. It could be controlled and was addictive. It signalled that you were getting stronger, fitter. I closed my eyes for a second and imagined me pedalling, saw my legs turning. I wanted to get into that zone with him and yearned for that pain.

I felt the burn. But it nagged throughout my body. It was constant and couldn’t be controlled. Nerve pain is what they call it, the doctors, and they’ll give you drugs, strong ones, but the pain never really leaves. It’s as debilitating as backache or a sore tooth which can’t be fixed, except you can have a tooth removed, kill the nerve, get rid of the pain but after a spinal-cord injury you can’t remove every nerve in your body. So the pain stays and you have to learn to live with it.

Life was so unfair.

I bit down on my tongue.  Come on Tracy why go there?

I bit harder and winced. You wanted pain? Well now you have it. My tongue stung. Was that blood I tasted?

Sexy Legs stood and pedalled. Sweat dripped off the tip of his nose. Instinctively, I wiggled mine wanting to sleeve it. I drew a frustrated breath.

Another droplet plummeted and was immediately replaced. Fuck that would annoy me, probably in equal proportion to an irritating fly. Why doesn’t he use the damn towel? It lay loosely over his shoulder, unused. He had a collection of them in his closet and a growing number of bright, branded T-shirts, bold proof of all his completed Ironman events. If he wasn’t in his work clothes then he had on one of those in your face T-shirts. Did he have to wear them all the time?

He’d sure as hell earned them. So if I were him, I’d probably wear them too. This man – my husband – was a machine. At 62 he’d completed all three Ironman events in the country in the same year. Un-freaking-believable. A proud smile took hold of my face.

“Ten more minutes,” he confirmed after checking the bike’s fitness monitor and returned the smile with a thumbs up.

My gaze descended with the next drop of sweat and stopped. I caught my breath. His legs were carved, his muscles flexed and contracted with each push and pull of the pedal. I couldn’t tear my eyes off them. Both legs gleamed. I felt a sudden urge to touch him and almost whimpered. My body as usual refused the command. How is it that I can desire with such intensity and yet my body won’t… can’t… react?

Feeling heat in my cheeks, I lowered my eyes. The moisture, his sweat, seeped into the paving. Again my thoughts turned to self-pity. If only my paralysis was partial. Why did it have to be from the neck down?

I lifted my chin and blurted, “I’m jealous. So jealous”

His brow creased and he looked me in the eye. I said it again and instantly regretted it. What’s the point Tracy? Why go back there? It’s been more than twenty years for fuck sake. Stop. Will these mind wars ever end?

His eyes softened. “I’m going to design something that will move your legs while I’m pedalling then we can cycle together.”

I forced a smile and the negative thoughts out.

“Good idea,” I enthused, my cheeks hot with shame.

I hated making him feel guilty for exercising. If anything, I wanted to encourage him. Swim, cycle and run as much as possible for no other reason than simply because you can. Isn’t that what I preach to everybody? You never know when things may change, when your body gets tired, old or injured. It could be your turn next. Use your body while it still works. Exercise because you can.

The more I thought about his idea, the more I warmed to it. Imagine how wonderful it would be to ‘cycle’ again. So what if he did all the work. We’d make it fun.

The following day I mentioned it to Tanya, one of my physio’s.

“But you get one,” she said.

“Seriously?”

“Yes, we used it in the rehab I worked in.” She reached for her phone and scrolled through some pictures.

“Wow! “

“I don’t know why I hadn’t thought of that for you before,” her voice was apologetic. I hadn’t given it a thought either until my Sexy Legs came up with the idea. “We used to put our stroke patients onto them,” she continued and pointed to one of the pedalling machines. It looked similar to an exercise bicycle you’d find in a gym but it was electronic and would turn my legs for me. “You’d love it.” She patted me on the shoulder.

After discussions with all my physio’s we decided that it was a good idea, not only for the feeling of some mobility but also for increased circulation. And maybe, just maybe, it would help me to get my tummy going again. Being full of shit wasn’t always a choice.

I should know by now though, that anything related to disability in this country is astronomically expensive, an absolute rip off.

To cut a long story short, we eventually found one on eBay and thanks to an earth angel friend Ina, I became the proud owner of an exercise bicycle.

Dad pieced it together and Berna and Tanya strapped me in. The excitement was palpable as someone plugged it in and another flicked the switch. A red light appeared on the control with a simultaneous beep.

My tummy fluttered. Here I go.

The light went out. After some more plugging in and out and flicking of switches it was clear that the machine was dead.

Disappointment wrapped me up and sucked me in.

“Don’t worry,” said Berna. “Hein and Ernst will sort it.” Berna’s husband and son were electronic wizards and had helped me sort out many issues in the past.

Berna called a couple of hours later laughing, “Hein and Ernst just rolled their eyes at me.”

“Why?”

“They said that everybody knows that when you buy something from America you can’t plug it in to our plugs because we use a different voltage of electricity.”

I swallowed. I remembered reading something like that. It had slipped my mind in the excitement. Will I ever learn patience?

I swore out loud. How was I going to tell Ina that she had just spent a small fortune on nothing? Berna laughed louder.

“Don’t worry. You know my husband. He’s good with these things. He’ll open it up and I’m sure he’ll get it going again.” I don’t know if she was trying to convince me because she was feeling bad or if she genuinely believed he could fix it. But it was all the hope I had and I was going to cling to it.

I did let Ina know that there was going to be a delay in getting it going and sheepishly told her why.

In a couple of weeks Hein and Ernst did their magic and I had my ‘bicycle’ back. My orthotist friend, Peter helped me sort out the leg straps to keep my knees and hips properly aligned and we were ready to go.

Here is the video clip we took for Ina of my first time ‘cycling’ in over 20 years.

I think my care assistant’s giggles in the background and my wraparound smile say it all.

And I’m freewheeling…

Royalties

 

So, I received my first royalties for Brave Lotus Flower Rides the Dragon from my publisher, Tracey McDonald. It’s in the bank (although probably not for long because there are always bills to pay). But it sure feels good.

Royalties are paid out twice a year. It’s not a lot of money. Not enough to cover even one month of my care assistants’ salaries. (No, you don’t get rich by writing a book unless, of course, you are JK Rowling.)

But still, receiving my first royalty payout has put the biggest smile on my face and my chest is bursting with pride. I feel like a queen.

It’s not about the amount of money (although every little bit does help), or even the number of books sold (although I still dream about having a bestseller).

It’s about picking up the pieces after your body is rendered useless and your life is shattered, changing tack, starting over, chasing a different dream and working hard (and long) to achieve it.

It’s about celebrating all the people who’ve assisted in getting me here – you know who you are.

It’s about proving a point to the world. It’s about saying ‘I can’ when the world says ‘you can’t’.

It’s about educating and changing ignorant mindsets. I guess, at heart, I’ll always be a teacher.

It’s about doing something positive with your life despite circumstances.

It’s about saying, “Wow! I’m an author.” I’m no longer just a quadriplegic (read as: a useless burden). I’m a quadriplegic author. I wanted to write a book. I tried. I failed. I tried again. And again and again. Finally, I did it. After I was paralysed I never believed I would write again, let alone, write a book. But in the end, I did. I can do it again. Or I can do something different. The point is I can do anything I choose to do. I can do anything I put my mind to. When you are paralysed from the neck down, that is huge.

It’s about people out there wanting to buy my book and enjoying it enough to encourage others to read it.  I’m endlessly grateful for your support.

It’s about making a difference.

That’s the real pay off… making a difference. And I have many messages from readers everywhere to prove it. There is no amount of money or milestone which could ever match that.

Thank you to each and everyone who has read my book, been touched by my story in some way and taken the time to tell me about it. You are my soul food and daily inspiration. There aren’t enough words to express my gratitude. But thank you for keeping me going.

Brave Lotus Flower Rides the Dragon is still available at bookstores or online. You may also order directly from me by emailing me at: bravelotusflower@gmail.com

 

Dreams Do Come True

All through life we are encouraged to dream. When you’re suddenly paralysed from the neck down, you don’t expect to have any dreams left, other than maybe making a miraculous recovery. I dared to dream about writing a book, having it published and sold in bookstores.

YOU – my family, friends, Lowveld community, blog readers, Facebook friends, Twitter followers, writing mentors, editors, Tracey McDonald Publishers and Thundafund funders chose to back me and turned my dream into a reality.

An entire library wouldn’t have enough words to express my gratitude. You’ve given me back a part of my dignity and self-worth. I couldn’t have done it without you. This book, Brave Lotus Flower Rides The Dragon, is for you.

The hardcopy is available NOW at Exclusive Books nationwide (South Africa).

The print edition is also available from online retailers Loot and Exclusives.

The e-book is available on Amazon, Snapplify, Take-A-Lot and Kobo.

If you don’t find it, let me know and we will make a plan for you immediately.

If you’ve already read it and liked it, please tell everybody you know to go out and get theirs and spread the word. Thank you for all the love and support.

 

I Need You

After trying various traditional publishers in South Africa to get my memoir published, and waiting an age for answers, it’s been disappointing, to say the least.

Everybody’s response was similar: “well written”, “inspiring story” but “not suitable for our list at the moment”, “we trust that you will find the right publishing house for your story”, “we wish you all the luck”.

My confidence waned and I became despondent, doubting my writing abilities and whether my story was indeed worthy of being told and shared, despite your (my blog readers’) continuous encouragement and support.

One person in the publishing industry (and I can’t remember who) put it all into perspective; “The reality, in South Africa, is that unless you are VERY famous, publishing houses don’t generally take on a memoir.”

That’s it. Like everything else in life, it all boils down to money.

Tracey Macdonald Publishers were the only ones to stick up their hand. Although encouraging, it was a hybrid deal and I needed to come up with close on R100,000. If I’d had cash, I wouldn’t have hesitated to give it a go, not only because it’s been a long time dream, but because I believe that my story is too important to be left stored on a hard drive.

Clearly, Tracey Macdonald agreed because, a year on, she undertook to help me put together a crowdfunding campaign to get my memoir published. I can’t tell you how much it’s meant to me – to have someone, not only professional and organised with precise attention to detail (which is what I love), but caring and willing to hold my hand through every step of the way. I’m in awe of Tracey’s commitment and look forward to meeting her in person sometime soon.

“I am determined to see her book, titled BRAVE LOTUS FLOWER RIDES THE DRAGON, published.” Tracey Macdonald.

Click HERE to read her press release.

Initially, I was scared and doubted whether we could raise so much.

But, once again, my ‘friends’ on social media showed their support.

Brenda Klopper sent me this encouragement via my inbox on Facebook: “All you need is to find 1000 willing people to each give R100.”

That perspective made me realise that perhaps our dream goal was achievable, after all.

Dave Walters, a special Facebook friend and supporter added: “It’s the price of one large pizza and many people can afford that.”

True.

Shaun Naude, a young man I taught many moons ago and now living in Australia, also commented that if you’re living overseas, your small contribution can make a huge difference, especially with our weakening Rand (ZAR) and the current exchange rate.

I’ve also had tons of support from my amazing community.

So let’s do this.

 

Click HERE to go to our campaign page on Thundafund, where you can read a little more about our project, what the different pledge amounts are, and what the associated rewards are for each pledge level.

 

So far, we’ve met milestone 1, so the project is a GO!

But, that doesn’t give me a printed copy in my lap. Neither does milestone 2.

I doubt that anything would give me more gratification than seeing my book for sale on a shelf in a well-known bookstore. I’m overwhelmed by the support and grateful to each and every one of my backers so far.

 

If you’ve enjoyed my blogs and would like to be a part of my dream, I’m asking for your help. Please. And this is how you can be of assistance:

• If you can afford to, please pledge funds towards our campaign. And ask your friends and family to do the same. Click HERE and follow the links to make a contribution. You can pay via credit card, EFT or PayPal. You don’t have to stick to the reward amounts. It may be a custom pledge. Any amount would be deeply appreciated.

https://www.thundafund.com/project_fund/5123376058204160 .

• Please share the campaign via email or on your social media channels, and ask your ‘friends’ and ‘followers’ to share the campaign link. Most times the success of crowdfunding campaigns comes down to reaching as many people as possible and you can help spread the word.

https://thundafund.com/project/bravelotusflowerridesthedragon

 

Holding thumbs and thank you for sharing.

 

Me Before You

Okay, so the movie, Me Before You(based on Jojo Moyes’ novel of the same title) has been hitting the big screens and is getting a lot of hype at the moment.

Click here to watch the trailer.

This is my two cents worth.

**SPOILER ALERT**

I read the book after many of my (able-bodied) friends convinced me that it’s a “must read”. Some even commented on how well the author gets inside the guy in the wheelchair’s head. But the book is not written from the quadriplegic’s perspective. It’s written from his companion/carer’s point of view.

To be honest, I hated the book.

Despite it being a love story, it has a really crappy ending and it left me feeling incredibly sad. I’m a romantic at heart and a real sucker for happily ever after. We have enough sadness to deal with in everyday life, so I prefer to find refuge in feel good stories.

I also found the book to be unrealistic in places and it’s clear that the author has never been personally affected by disability. From what I’ve seen and heard about the movie so far, the producers and actors also have no real clue of what it’s like to be quadriplegic. How could they? They’re all able-bodied. So should they really be the ones to be telling our stories? I’m not so sure.

The movie has caused outrage among many in the disability sector.  Most of the quads I know are tired of the media portraying our disability in a negative light and really wish that the storytellers in our world would do more research before creating unrealistic characters that pander to their own ignorance and insecurities. We don’t all want to die. Many of us are living full, meaningful lives and contributing positively to society and some are doing more than a lot of able-bodied folk. Most of us are too busy living to get busy dying.

The movie’s determination to romanticise assisted suicide leaves me wondering if I’ll ever be accepted. Do people think that I should also just kill myself because I am paralysed from the neck down?

I keep reminding myself that this is only a story with one fictional character’s negative outlook on life. It certainly doesn’t represent who I am as a proud quadriplegic woman.

There is always a silver lining and, as they say, there is no such thing as bad publicity. The controversy over this movie has highlighted the plight of quadriplegics the world over and ignited discussions around disability in general. That in itself is a good thing. We can all learn something from healthy debate.

At the end of the day, this is a story about one character’s freedom of choice. Isn’t that what many of us fight for? Our freedom to choose. Who are we to judge? It does worry me, however, that his choice is presented not as selfish and cowardly, but as sacrificial, brave and even noble. Should I also be sparing my family the burden of caring for me? Am I the one being selfish by choosing to live?

None of the other characters supported Will Traynor’s decision to end his life, which sends out a good message that not all quadriplegics are simply abandoned. It also tells the world that irrespective of physical ability, we can love and be loved.

The good thing is that movies like this create awareness and opens doors for people like me to share our stories, which in contrast could have a powerful, positive impact and make a real difference to people’s mindsets. The mere fact that many of us haven’t given up and don’t intend to any time soon  can give society a new appreciation for our daily struggles and in turn become stories of hope and promise rather than abandonment and despair. As, after all, disability can reach out and pull anyone of you into its nasty club at any time.

I think that the film producers missed a perfect opportunity here to make a real difference to our world. Think about how powerful and transforming this movie could have been if it had had a different outcome? And, I’ve no doubt that the story would still have been a massive hit.

For me, I want people out there to know that there is life (and love) after a devastating spinal-cord injury and it can be a good quality life, depending on one’s attitude. I certainly don’t want to kill myself or be pitied in anyway.

What happened to fairytales with happy endings?

They do exist in real life.

I know because I’m lucky enough to be living one at present.

 

If you’ve read the book or seen the movie, I’d love to hear what you have to say.