Ask Me

Humans, by nature, are curious. We are also quick to notice differences and then become inquisitive.

As a result of my disability, I have been asked many questions.

I don’t mind.

Questions provide an invitation for you to get to know me; a chance for me to bring you into my world; an opportunity for me to expose my heart and soul so that you can see that I’m not as different as you think I am.

Sometimes it’s not the questions themselves, rather who is asking them that matters most.

I was honoured to be a guest speaker at the Africa Young Round Square Conference held at Penryn College. The audience was mainly 12-and 13-year-olds from countries like Namibia, Ghana, Kenya and South Africa.

I was blown away by their insightful, thought-provoking questions after my presentation.

I thought that I would share my answers with you as I would answer them, today, cheekily taking advantage of the time I’ve had to think and, of course, hindsight.

 

Did you ever feel like just giving up?

Yes. Many times.

The most difficult part of being paralysed from the neck down is not the immobility; it is the relentless battle that goes on in my head.

I don’t believe that I will ever be able to get to the point where I can fully accept my state of being trapped by my own body, having to live like a sort of modern-day mummy.

I recognise that I will still face a lifetime of mind-wars which will probably leave me weary and feeling defeated, at times.

But, I know that I must continue to do my utmost to make peace with this way of life.

I make a conscious decision, everyday, to put a smile on my face and to be positive, in order to get on with life, as is.  If not for me, then for my loved ones, most especially, my son.

Do you think that it was your destiny to be paralysed?

Do any of us really know what our destiny is?

I can’t accept that it would be anybody’s destiny to live a life of extreme disability.

No, I don’t buy into that whole notion that there is a plan for your life, set out from the day you are born.

I believe that life happens – to all of us. Sometimes it’s good. Sometimes it’s bad. No, life is not fair. Then, no one ever promised that it would be.

It was my choice to take off my seat belt minutes before the accident.

This is my reality. I must live it.

If you could change what happened to you, would you?

Yes. This kind of life is extreme. The frustrations of complete physical immobility are sometimes incommunicable.

I try to focus on what I can do and what I have rather than what I can’t do and what I don’t have.

I continue to remind myself that there are people worse off.

But, to be honest, it doesn’t stop me secretly yearning to do more and wishing that things were different.

Have you changed as a person because of what happened to you?

Yes. I’ve changed. I believe we all change as we grow older.

There will always be familiar personality traits, unique to each of us, which are fundamental to whom we are as people.

But, continual exposure to knowledge must reshape you. Awareness and understanding can re-form you. Events and happenings will mould you.

Most profoundly, unpredictable joys and sorrows redefine your essence as a human being, time and time again.

Life changes you. It’s called experience.

If there was only one thing you could do again, what would you choose?

At the top of a very long list would have to be the ability to put my arms around the people who I love.

I don’t need my legs. I don’t even need my hands. All I want is the use of my arms. Surely that is not too much to ask?

I wish more than anything that I could reach out and hug, especially my son.

There were two more questions:

How does your son cope? Was he bullied or treated differently as a result of your circumstances?

I’ve decided to answer those questions separately in a blog post, coming soon.

Please feel free to ask me anything, any time – nothing is too personal. There are no stupid questions. The only thing that makes you stupid is ignorance.

Ask me. Come on. You know you want to.
**Photo credit: Penny Andre**

Celebrating 15 years

Few people can say that they were given a second chance at life.

A decision to remove my seatbelt in the front passenger seat of the car while it was still moving, climb over into the back to tend to my baby was most likely the reason I was left a C4 quadriplegic after an accident a few seconds later. For a while, I was attached to a ventilator, unable to even breathe on my own.

April is my anniversary month. It’s been 15 years. I can hardly believe it.

If it were a marriage I’d be getting a gift of crystal, glass or a watch.

Instead, life itself is my gift – every day. That is reason enough to celebrate.

Although the daily challenges, physical and psychological, are many and living life paralysed from the neck down is tough, it’s not impossible.

It’s been so worth it. I’m grateful to have shared 15 more years on this earth with all the people that I love, especially my son.

Besides being surrounded by my incomparable parents, family and friends, I have the love, care and support of my community, many of whom I have never even met.

The year has already been good to me so I have much to be thankful for.

I’ve had some great speaking engagements. I got a brand-new, oh-so-sexy wheelchair – a real luxury ride.  My  Sexy Legs is spending a lot more time here. 

What more could one ask for?

The public tend to put me up on a pedestal, often labelling me an inspiration, when all I do is sit dead still, give orders and smile whilst behind-the-scenes there are an army of people who work tirelessly to tend to my every need.

They are the true heroes of this story.

An African proverb says, “It takes a whole village to raise a child”.

That may be so.

But, it takes an entire community of Earth Angels to enable a quadriplegic to live a full, meaningful life.

I thank God for each and every one who touches my life.

And to you, my blog readers, even though I don’t write very regularly anymore, never underestimate the power of the difference that you make.

With gratitude and love,

Tracy

The Red Room

The bedroom light went off.

Not long afterwards, I became aware of her presence in my room.  I knew immediately that it was her.  She has an unmistakable, distinctive sound – instantly recognizable and highly annoying.

I sighed – loudly and irritably.

Through a clenched jaw, I said a silent little prayer.

Oh please God, not again.  Not tonight.  Please.

My heart pounded because I knew, deep down, that she was there to stay, for a while at least, until she had her way and got what she came for, whether I liked it or not.

I was filled with dread as she began her familiar little ritual of approaching slowly, sounding more intense, exposing herself in the light filtering through the bathroom blinds, illuminating my bedroom, just enough for me to see shapes and movement .

Then, she would retreat almost out of earshot, hiding beyond my peripheral vision and concealing herself behind something in the room.

Seconds later she would appear again, right up close, brushing my cheek as she continued her sinister little game of dancing in the dark, teasing and tormenting me as she went along.

Anxiously, I struggled to control my breathing, trying not to panic.

But, she’s attracted to fear, it seems.

The faster you breathe in, the quicker and harder you breathe out.  The more carbon dioxide you exhale, the more excited she becomes, spiralling her into an attacking frenzy.

I spotted her in the red hue of the clock radio beside my bed as she bore down, sucking on my thumb.

She stared at me, boldly, head-on.

I glared back at her.

She stayed there just long enough to show that she was in charge, confirming her dominatrix fearlessness, seemingly mocking my powerlessness and inability to move.

How dare she?

I wanted to scream but, I didn’t want to give her that satisfaction.

She appeared delicate, almost fragile looking but, I knew different.

My personal experience and her reputation leave no doubt that she’s dangerous, so cunning and extremely calculating.

Instinctively, every fibre of my being wanted to protect myself against her.  I wanted to jump up and lash out at her physically, grabbing something to use as a weapon against her – anything that would do her serious harm or, preferably, kill her.

Very few have the ability to bring out such a violent reaction within me.

But, being paralysed from the neck down, my rage is mostly confined to a pitiable quivering of the lip and a pathetic shaking of my head from side to side against the pillow, as violently as possible, to which she paid absolutely no attention.

Clearly mistaking my lack of action and immobility for submissiveness, she moved swiftly into my neck with only one goal and that was to satisfy her own needs or fetish.

She claimed me, then, for the night, despite my disgust.

She started prodding me all over, looking for a suitable place to insert it, as if I was her own personal red room of pain, to use and abuse at her convenience without the bother of all the strapping and hassle with bondage.

She was pure evil – definitely no Christian.  The only grey was whether she was carrying the deadly disease or not.

Still, she had no qualms about doing it, viciously drawing blood in the process, also leaving behind some saliva as she drank me in.

I was left inflamed, sore and swollen and feeling utterly violated, crying tears of frustration and complete helplessness.

Sadly, for me, the torture will continue long after she leaves, often lasting many days especially since I have no way of touching, rubbing or scratching to ease the discomfort.

Worst of all is she probably went away bursting, feeling fulfilled, energized and satisfied, boasting to all her buddies, encouraging them to join in the following night – inviting them over for an orgy.  They will all come.  Again.  And again.  Trust me.

If you think that you are too small to make a difference then you have never spent a night with a mosquito.  Believe me.

If you see a mosquito, swat it.  Just for me.  Just because you can.

Dear God, please get her to bite me anywhere below my neck so that I don’t go insane from not being able to scratch.

 

If you enjoyed reading this post, please share it with my gratitude and love.  Thank you!

Gentleman, Goodbye

We made eye contact.  I held his gaze, firm and steady, for what felt like the longest time ever.

His unique, green eyes looked familiar and ever-adoring.  There was no mistaking his love for me – a love so pure and real – one difficult to go without once experienced, and one rarely found among most people.

His giant-like stature belied his true docile nature – a genuine gentleman with an unwavering loyalty.

Irrespective of the intensity of my mood, his mere presence in a room had the ability to soothe my mind and comfort my heart better than any meditation technique I’ve ever attempted.

I couldn’t keep my eyes off of him.

My immobility enabled me to fake calmness in sharp contrast to the frenzy of emotion going on inside of me.

I knew that he trusted me wholeheartedly which made things even more difficult.

Overwhelming, self-consuming guilt forced me to look away.

How could I do this?  How could I?

But, I had to.  I argued with myself.   It was the right thing to do.  Wasn’t it?

Then, why did I feel so doubtful?  Why did it feel like I was committing the ultimate betrayal?  Why did I feel sick to my stomach?

Dear God, why did I have to be the one to make this decision?

I had made the call.  Now, all that was left was to wait.

The vet was on his way.

In the animal world it’s known as euthanasia.  In the human world, we call it assisted suicide.

Matfield (3 March 2008 – 2 November 2012)

When you eventually get to a point where you have got to make the choice to “put your best friend down”, it feels like murder.

You can play with semantics all you like, when you share a deep love and respect, it remains the most gut-wrenching, soul destroying option on the planet.

Not too long ago, Matfield, my gentle giant of a Great Dane was diagnosed with Degenerative Myelopathy, a progressive condition that would result in him being paralysed.

I was in shock.  I was not expecting that.  My big, clumsy baby was only four-and-a-half years old.

Matfield had led a happy and healthy life.  I was aware that all large dogs, more especially the giant-breed canines, are often prone to hip, bone and spine complications.  But, not so soon.  Surely?

But, I still had time.  I consoled myself.

Although the vet warned that in some dogs the progression is rapid, I chose to ignore that.

I read up as much as I could on the disease so that I could prepare myself mentally for what was coming.  I knew that he wasn’t going to experience any pain.  My vet also confirmed that there was nothing that could be done.

I hadn’t noticed but, Matfield had displayed all of the early warning signs.  I tortured myself.   How on earth could I have been so blind?

No amount of reading or psychological priming could prepare me for the events of last week and its aftermath.  I’m utterly gutted.

Seeing my most cherished companion unable to get up with untold fear in his eyes and panicked panting in confused response; hearing my protector’s last fighting, deep-throated growl as the needle went in; smelling the deadly anesthesia as it permeated the air with me, at that very moment, secretly and shamefully wishing to accidentally be given a dose as well; not even being able hold my loyal guardian myself, having to rely on poor old Dad, who himself was distraught, to keep him calm is enough torment to last ten lifetimes.

Today, one week ago, Matfield crossed over the rainbow bridge.

Dear God, when I die, may I please go where Matfield went.

Blog Value

I haven’t written a blog post in a long time, I know.  And I must apologise.

I can give you many reasons why but they will just all seem like excuses.  So, I’m not even going to try.

The purpose I started writing a blog, at first, was to be able to stand up and tell the world what a raw deal life had dealt me – how being paralysed from the neck down is a living hell.

I had an urge to rage about my situation, without feeling guilt for hurting the people I love most in the world or offending all those who do so much for me on a daily basis.

I needed somewhere to convey my sad story by sharing excruciating frustrations, revealing unimaginable physical challenges, stating deep, emotional pain, showing pitiful vulnerability, disclosing some shameful secrets and basically exposing my pathetic life as a quadriplegic.

I wanted a refuge where I could cower and feel sorry for myself away from the pedestal many able-bodied people had put me upon, removing the Miss Inspiration sash and fake smile.

Instead, this blog landed me right in the middle of an unexpected sanctuary as I slowly opened up, bringing on a serene sense of calm to my troubled mind, gently reviving a bruised and battered spirit and providing some profound healing which I didn’t even know that I still needed.

It brought all you special souls from all across the globe into my life, enabling me to feel connected, astonishingly useful and so alive.

Your heartfelt comments encouraged me, providing comfort and solace without you even being aware of it.

This space, then, became a haven where I felt safe enough to continue speaking my truth, baring my soul and expressing my heart.

I can never thank you enough for that, my dear Readers.

Yet, still, I’ve neglected an important part of my life – a vital part of who I am.  It’s no wonder, then, that I’ve been feeling an unfathomable restlessness the past months, like a chunk of my soul is missing.

I know, now, where it is.  It’s here.

I need to write again.  For me.

Run. Run. Run.

In the early hours of the morning, not able to sleep, as usual, I was online, catching up on some reading of other’s blog posts.

Kristin of Halfway to Normal wrote a post about why she does not run.

Anything to do with running always catches my attention because it is close to my heart, embedded deeply into the motherboard of my being, somehow.

I wasn’t a great runner.  Really.

But, for some inexplicable reason, I was captivated by its power, particularly its control over my psyche.  Running had the authority to relocate my mind, mysteriously separating it from gruelling physical pain in my body, transporting me through extreme emotions, forcing my moodiness into submission and gently placing me in another more comfortable, happy-place.

Never have I allowed anything else or any other human being such dominance over me.  So, running, very quickly, became my drug of choice.

I always came back from a run feeling calm and relaxed with a deep sense of peacefulness in my spirit no matter how sore my muscles and aching joints were.

To say that I miss running would be an understatement.  There are days that I wish I could just put on my running shoes and run, and run, and run.

The last time I ran, was on a beautiful, unspoiled stretch of beach on the Eastern Cape coast, South Africa.

Then, I got into the car with my husband and ten-month-old baby to travel home after our first holiday together as a family – the happiest time of my life.

I made it home, eventually, paralysed from the neck down.

Since then, every fibre of my being has craved, wanted, wished and dreamed of running again.

But, no matter how much I pray, plead, beg, cry, scream or rage I am never going to be able to run, ever again.

In her blog post, Kristin writes:

“Running says all kinds of positive things about a person: that you’re serious about your health and fitness; that you’re disciplined, and able to push past the pain; that you’re someone to be reckoned with.”

There was a time in my life where I would have agreed with that 100%.  In fact, I was living it.  Arrogantly, I felt a little sorry for the non-runners, thinking that they were really missing out on truly living.

Kristin goes on to write:

 ”Not running, of course, seems to say the opposite: unhealthy, undisciplined, uninspired, unintimidating. I am the un of running. Yuck.”

Shamefully, when I was running, I would have nodded my head in agreement to that statement.

Thankfully, running did give me many skills, I still use today, to cope with the difficulties of being a quadriplegic.  But, I’m grateful that my mind has now been opened because there is nothing more limiting than a closed mind.

Gladly, I can say that I am most certainly not the un of running.

By the grace of God, I am healthy.  I’ve not even had the flu in the past five years.

I am disciplined – living this life trapped in my corporeal prison demands strict routine to enable small things to function optimally like, my bowel and bladder being emptied at specific times of the day, every day, for the rest of my life.

I am inspired to make the most of each day and each moment I have on this Earth.  I know what it‘s like to face death, survive and realize what a privilege it is to have been gifted an extra 13 years with my son, family and friends.

I must be incredibly intimidating.  I spent many hours alongside my running-buddies, pounding the pavements, covering thousands of kilometres whilst pouring our hearts out to one another and most of them were too afraid to even face me after my accident.  But, I understand that mindset so, I forgive them.  Most people have an innate fear of physical differences and disabilities because it evokes their own personal dread and insecurities.   One just has to go out to the shops with me to see how scary I really am to other people.  Some can barely look at me whilst others will stare so that their mouths literally hang open.  I can’t say I blame them because I often feel like an alien living in a world specifically designed for able-bodied people.

What I do know is that I am strong – maybe not physically but, more importantly, emotionally.

Society views disability a weakness yet, it demands the utmost of strength for those of us living this life.  I do believe that I gained this valuable characteristic from running.

If I had a choice, I would choose to run, without a doubt.  But, since I was stripped of that option, I decided to rebuild a new, meaningful life in a different body, learning many, sometimes very hard, life lessons along the way.

Besides, if you have been following my blog you will know that I completed last year’s Comrades Marathon through my very special Sexy Legs.  So, running will forever be in my blood.

Mostly, I have made peace with my situation and always try to remind myself that I am… ENOUGH.

If you like running and you are still able to do so, then, go put on your running shoes, now, if you can.  When you are really tired, thinking that you cannot go on anymore, take a few extra steps, just because you can.

If you don’t like running, go for a walk, jump on the bike, go to the gym or for a swim – whatever you can, just because you can.

If you, like me, are no longer able to walk or run, help me to encourage all those other able lazy buggers to use their arms and legs while they still can.

I still get enough exercise, pushing my luck!

Toilet Talk

Human beings are really strange creatures. 

We are the only species on the planet who feel the need to hide in tiny, walled-up cubicles, preferably soundproof and well-ventilated, to do our business. 

Depending on gender, likes, dislikes or OCD’s we position ourselves on, over or in front of a toilet which is usually a large, ceramic-type bowl for urinating or defecating into, typically plumbed into a sewage system, with a flushing mechanism. 

We take care to aim carefully so as not to make a noise.  Some even go to the extent of layering toilet paper over the water in the bowl to muffle the sound of the pee-stream or preventing the inevitable poo-splash.  Heaven forbid that anybody else may hear what we are doing in there, despite knowing that all people do exactly the same things behind that closed door. 

If we dare make a smell, which other people may find offensive, we get all stressed out and frantically start opening windows or spraying some vile-smelling-lavender-toilet-spray into the atmosphere to try to hide the stink, fooling ourselves into believing that nobody will notice.

Like everybody else, I have had all of this branded into the motherboard of my being.  I like my privacy in the loo but, I will never get it back.  Ever.  Again.

For me, not being able to use my arms and legs has become the easiest part of being a quadriplegic.  It’s everything else that goes with being paralysed that is difficult to deal with.  Ask anybody living with a spinal cord injury what their biggest challenge is.  If they were to be honest, I’ll bet that there answer would be dealing with bowel and bladder issues.

My entire life is ruled by my pee and poo routines.  My bowel and bladder need to be physically and manually emptied, by my care assistant, at specific times – something I am still not used to and probably will never entirely be able to make peace with.

To this day, so many years later, I still feel embarrassment and a deep humiliation every time I have to go.  The sense of shame is overwhelming.  I resent my loss of privacy, my loss of independence and my loss of dignity.

Dear God, will these feelings ever go away?

I didn’t ever think that I would miss sitting on a toilet.  I do.

Even more than that, I miss being able to wipe my own butt.

There are days I wish I was an elephant or any other animal, for that matter. 

I love how they just empty their bladders in a torrential downpour and simply lift their tails to drop their load, leaving behind a steaming-mini-mine-dump while continuing to feed, surrounded by their herd-buddies, without a care about who’s watching or what they’re thinking.  If we humans are watching we gasp in mock-shock or make fun of them, giggling our stupid heads off. 

Animals truly know how to live out the mantra, “what others think of you is their business”.

Dear God, please may I be an elephant in my next life, if there is one?  But, please don’t give me any tusks because I don’t want some selfish human being shooting me for them.