Dear Body

Dear Body

I’m sorry that I hurt you by breaking our neck all those years ago.  I was young, with an arrogant attitude to life that I was invincible.  I didn’t appreciate your youthful beauty at the time, I know, but I’ve since learned many valuable lessons.  I know, now, that I have a duty to keep you healthy because you are the only one I can and will ever live in.

Believe it or not, I eventually grew to love you, despite being useless paralysed.

By the grace of God, with the love, care and support of my son, family, friends and community I managed to successfully rebuild a new, meaningful life with you.  And for that, I am grateful.

I know that you’re far smarter than I am and that is why I have tried to learn from you.  You have a wisdom which I lack.  I’ve tried my best to listen to you and, more importantly, understand you.  But, you gotta help me here a little bit more.  I’m at a loss.

I’ve been really worried about you.  I’ve felt you crying out for help with every fibre of your being. I know that I can’t feel the pain anymore.  But, I do understand that you still feel it and that it hurts like hell.  I knew with all our heart that you were in severe pain by the way you were suddenly acting.  You’ve taught me well.  I’ve learned to listen to you and I can recognize the signs of pain when you spasm or contract awkwardly.  I also know how dangerous autonomic dysreflexia can be.

So, I did the right thing.  Don’t you remember?  I took you off to the doctor – the smartest guy I know. 

Secretly, we rolled our eyes at his concerns of a possible bladder infection or bowel impaction.  But, we can forgive him, because he doesn’t know how intimately I know you and I trust that he always has our best interests at heart because of his thoroughness.  So, for the sake of peace of mind, we cooperated.

He immediately sent us for an abdominal x-ray, a sonar, urine tests and blood tests.  Yes, I know that we hate needles but, sometimes it’s necessary.  Our arm didn’t pull away too violently so it couldn’t have been that bad.  At least the nurse was friendly and I thought it was really nice of her to visit us at home.

He told us that there was some faecal loading in our bowel.  Well, we certainly didn’t need an x-ray to tell us that.  Besides, we are all-woman and it’s our prerogative to be full of shit sometimes.  Is it not?

So, I punished our poor tummy by drinking the most disgusting stuff in order to get rid of all the shit.  I think our taste buds are still recovering from the shock.  After excessive groaning, burping and farting, our bowels eventually emptied themselves much to the disgust of our oversensitive nasal passages.  I have to admit that I felt really sorry for my care assistant as it was rather foul.

While we are on that topic, I have to tell you that you often make me feel humiliated.  You burp and fart at the most inappropriate times.  Have you forgotten that we are a lady?

Anyway, the emptied bowels didn’t help.  Your right-hand side was still writhing around in pain, especially our right leg.  I was convinced that there was something wrong with our knee or hip.

Our physiotherapists couldn’t find anything unusual.  A friend sent her chiropractor over to check us out, and she couldn’t really find anything strange.  We even had photographs taken of our entire body to establish if there were any hotspots as a result of a buildup of heat energy due to the pain.  They didn’t even come up with a teeny-weeny, little hot spot.  Nevermind.  As far as we are concerned, we are hot, hot, HOT.  Yes, and oh-so-sexy.

Hey, I even took you off to that drop-dead-gorgeous ear doctor to relieve the pressure in our ear in the hopes of making you feel better.  I know our eyes enjoyed the visit.  The candy gave them a much-needed spin.  And as for our ears, well I think that they thought they had momentarily died and gone to heaven every time he touched them.  Oooh… it was good.

Flesh is so contradictory, isn’t it?  It goes on pleasuring and humiliating until the day we die.  It would be nice if we could focus more on the pleasurable side of things, if only you would do your bit and play along.

The spasms got so bad that we were now struggling to sit in the wheelchair without falling over.  You kept me awake night after night with your contortions.

You had me so worried.  I feared the worst.  I thought we’d gone and developed a syrinx in the spinal cord or something equally as terrifying.  We went back to the doctor and neurosurgeon.  We had a CT scan, a bone density scan as well as a cervical MRI.  I know that it was a little cold and uncomfortable for you but it was bloody scary for me.  After a nerve-racking wait for the results, they came up with nothing.  I was relieved.  But so, so, so frustrated.

We put you onto some special drugs to prevent spasms, which I hate, but anything to get you back to normal.  They didn’t help.  And I was getting desperate.

I took you halfway across the country, at great expense, to specialist doctors at a spinal unit where they told me, after many more tests and an isotopes bone scan that our trochanter (upper femur) had a stress fracture.  The doctor wanted to know what I had been doing to you to break our bones.  I can’t share all our secrets now, can I?

I know that I was extremely joyous at the news.  It wasn’t that I was celebrating your pain and injury.  It was just that I was relieved to finally have an answer so that we could treat you and get you all better.  So, after a week in hospital, we went home.  Doctor’ s orders were to take it easy and I was to make sure we take all the medication.  No more swinging from the chandeliers either.  You sure know how to spoil a girl’s fun, don’t you?

I was very good about taking the medication and I treated you really well.  Our poor tummy ended up with an ulcer because of all the anti-inflammatories and pain medication.  I had to do something as it was becoming unbearable and your behaviour was getting out of hand.

You must still have some sort of charm about you because you managed to get my doctor, the orthopedic surgeon and his lovely wife, who happens to be my friend, to do an after-hours housecall.

So, back we went for another full MRI scan and CT scan.  Now they are not even sure if your leg was ever broken in the first place.  That’s nice.  How do you think I feel?  Well, let me tell you.  Like a complete idiot.

As a last-ditch attempt, the physiotherapists have agreed to see me everyday for the next two weeks to see if their intensive treatments and acupuncture will make a difference.  At this stage, I think my physio’s are the only ones who still want anything to do with us.  But, don’t push your luck.

The doctors are at a complete loss.  My medical aid is depleted.  I have stopped all the medication which seemed to be doing us more harm than good.  I have done everything within my power to try and help you. 

Three months on and you are still behaving just as badly, preventing me from having any sort of life at all, keeping me housebound.  Is this really necessary?  Don’t you remember that we are social beings and need to see other people?  Do you care that I’m feeling lonely?

I feel as if I am constantly at war with you.  I don’t want to be mean but, you’re holding me back, confining me and, quite honestly, irritating the hell out of me.

You’re humiliating me and making me feel awkward and insecure.  I worked so hard to rebuild my self-esteem, self-worth and self confidence and you are compromising that at the moment with your bad behaviour.

I know that you don’t agree with me, but, walking is really overrated.  Seriously.  All I want is to be able to sit in my wheelchair without making a complete freak show of myself.  Is this too much to ask?

I take full responsibility for turning you into a quadriplegic and for that I have apologised over and over again.  Who knew you would be so unforgiving.  And relentless.  Is this your revenge?  I probably deserve it but will I ever get a break?

I feel like screaming at the top of our lungs: Hey, Universe, when is it my turn? 

So, Body what exactly do you want me to do now?

A Punch in the Face

This week a story touched a raw nerve deep within my being, hauling up emotions I thought I had long dealt with and buried.  Well, obviously not, because I have been overcome by grief.

The story is about a lady who was left paralysed after things went wrong at the birth of her triplets.  Four years later she is fighting her ex-husband, along with her parents, to have access and visitation rights to her children.  What was meant to be the happiest day of her life, turned into a never-ending, lifelong nightmare.

Click here to read the story, and here to read the outcome.

After I was left paralysed from the neck down and consequently divorced, sole custody of our son was awarded to my ex-husband.  I was devastated. 

Although I was granted visitation and access to my son, the journey has not been simple or easy.  I’ll spare you all the gory details.

As with most divorces, nothing seems fair, things often get ugly, emotions run wild and unfortunately, material things, money and children become the weapons in the war between the two broken souls who once loved one another enough to make a commitment and declare publicly “… I … take you … until death us do part.”

I have to wonder why we still insist on getting married, making these vows to one another when we do not really intend to keep them or they are loaded with conditions.

I was angry.  I was bitter.  I was scared.  But, most of all, I was sad.  Just.  So.  Sad.

Who do I blame?  God?  Myself?  My ex-husband?  The psychologist?  The lawyers?  The judge?  The system?

Yes, a part of me will always be critical of choices and decisions at the time because I was traumatized, rejected and hurt, physically and emotionally, in the worst possible way imaginable.

But, if I am to be brutally honest, we are all a product of the same society – one that does not know sincere compassion, have real understanding of differences and sadly, lacks true empathy.

So, then, we are all to blame.   

We’re part of a culture that is not only ignorant but is ashamed of imperfections. We are constantly bombarded by images of perfection, extreme outer beauty or good looks through the media.  We are made to feel inferior and are pressured to have plastic surgery, implants, Botox, teeth whitened, laser treatments and every other so-called beautifying process.  We risk being shunned if we have skew teeth, a crooked nose or, heaven forbid, wrinkles.

So, as a result, facing any type of permanent disability – or even a serious temporary injury – is far too traumatic for most people to comprehend.

We are all human where our primal instinct is to “fight or flight” when faced with a terrifying situation.  When it comes to disability the flight instinct, for most of us, wins hands down.

Disabilities immediately evoke fears of abandonment, rejection, loneliness and frustration – and understandably so – because that is just human nature.

Many of us are obsessed with finding ways to become happier, more fulfilled and better people on the inside.  Is it, perhaps, because we are trying to compensate for not fitting the perfect mold that society expects of us?

Yet, when real life punches us in the face in a desperate attempt to teach us, we run.  We hot-tail it out of there as fast as we can.  We don’t seem brave enough to stay in order to learn the lessons, the skills and coping mechanisms we need to move on in life as empathetic beings.  It takes courage to learn.  Often, we don’t have the guts to stay, to learn the teachings of the universe and that’s why we will continue to make the same mistakes time and time again.

There was a time in my life when I also believed that a person with a disability was incapable of making a positive contribution to society, let alone, be a parent.  Until, it happened to me.  And for that, I am truly sorry.

Well, I couldn’t run, this time.  I had to stay and deal with my paralysis.  I had to put up with people staring at me, some with pity in their eyes and others with a smirk on their faces, whilst hiding my intense heartache.  But, I have learned valuable lessons which have forever changed me, cleansing my spirit, removing staining judgments, prejudices and intolerances.  And for that, I am grateful.

My resilient maternal instinct refused to give up, forcing me to fight, not only for survival and adaptation to almost incomprehensible change, but, for persevering and pursuing a relationship with my son.  And for that, I have no words.

I don’t blame his dad for making the decisions that he did at the time as, after all, he is also a captive of humanity’s present mindset.

Maybe, in my own small way, I can make a difference, even if it is, just changing one mindset at a time.

Disability can strike anyone at any time.  I long for a society that can embrace uniqueness or disability and just celebrate life in all its raw, natural states.

Does it scare you to be part of a world, that you know, could turn their backs on you should you become disabled in anyway?

Raw. Unedited. A Brother’s Story.

A spinal cord injury, resulting in paralysis, is severe and harsh for the entire family unit, not only the injured person.  

A while back I asked my beloved brother, Trent, whom I adore, to write about the impact my spinal cord injury had on him as my brother.

He shares his personal story – and brutal truth.  This is his account.

Raw.  Unedited.  Written by Trent Sinclair.

 

 

When asked to put my feelings and experiences in words, I realized how emotional and difficult it is to do.

Let me start by describing my relationship with my sister prior to the tragic and life changing day.

Tracy and I were, in my opinion, very close. I always admired her sporting abilities and achievements. She was always above average in all she attempted.  She was an excellent teacher and mother. She was a friend and a sister.

One may ask why on earth did you write the above as if in the past and as if she’s not around anymore?

Well the truth is that once you read on, you will learn that my respect and feelings towards Tracy have gone from a high level to a painfully high level?

The day of the accident.

On this day Tracy and her family, and Monica (my wife) and myself were traveling back from our respective holiday destinations. When in Middleburg I recall Radio Jacaranda warning motorists that there was serious traffic congestion around Belfast and Machadodorp? I prepared myself for a busy and slow trip home? Strangely enough we got through this section fairly quickly. It was late afternoon when we got home.

As always, when I did long road trips I phoned my parents to tell them we have arrived home safely. Yes you all know how parents are? Always worried? Well, rightfully so on this day.

When chatting to my mom she expressed concern that she hadn’t heard from Tracy yet.  I still reassured her and even laughed it off, as there was heavy traffic for Tracy to move through.

The dreaded phone call

As Monica and I started to relax after unpacking, the phone rang.  It was my mom sounding extremely stressed out. She battled to make sense and all I could decipher was that Tracy, Craig and Chad had been involved in a car accident.  This sent a cold shiver down my spine!  Again, I remember telling my mom not to worry, until we had all the details. With all due respect, please understand that when I say our mother is queen of stress, then I mean it!

I was about to phone Tracy’s mobile, and our phone rang again. It was Craig on the other side. He sounded only slightly stressed and started to explain what had happened. I recall interrupting him, and asking to chat to my sister, as I could hear Chad crying in the background.

The bazaar and confusing thing was that I spoke to Tracy and she sounded calm and reassured me that she was fine.  She still said she has very little pain, and was waiting for the ambulance to arrive shortly.  She cut me short and said she has to attend to Chad as he was stressed out.

Craig came on again and told me that they are “shaken but not stirred”. As the seconds ticked by, I tried to picture the accident scene.  Each flash picture was changed by the next as the verbal and background audio was transmitted through the receiver.

As Craig was communicating I heard vehicles, doors opening, Chad crying, people calling Rocky (Tracy’s staffie) and a babble of other sounds I couldn’t separate.

This all seemed minutes long, but in reality it was probably only 1min in total.  Once I put the phone down the full reality and visions hit me. I panicked as I had just lost contact with Tracy and the situation.

It was then when I phoned my parents back. By now my poor mom had no choice but to let my dad take over. Between my dad, Craig’s dad and myself, we had managed to put enough information together to work out a recovery and assistance plan.

My dad said he and Craig’s father would come from Nelspruit and head towards Standerton. I said I would do the same from Lydenburg.

After phoning my director to ask permission to go, I asked Monica to pack an overnight bag. I jumped into the shower to try freshening up; I am not the most confidant nocturnal driver, especially after our 6-hour trip from Rustenburg.

While I was in the shower the phone went again? I could her Monica crying and felt my heart rate race. She said that it looks like Tracy’s neck was broken?? All I could remember was that I convinced myself that they must be mistaken? After all I had just spoken to Tracy and she personally assured me she was “fine”.

Car trip to Standerton.

With horrific visions and stressful thoughts racing through my mind, Monica and I climbed into my pick –up and started the dash for Standerton. My mind was so focused on getting there; I honestly don’t recall much of the trip.  The so-called traffic congestion and potholes were mysteriously nonexistent. The only memory of the trip was the odd phone call snapping me out my trance. The calls were my mom and family giving their support. Monica and I went straight to the local hospital where my father and Craig and Tracy were. Well at least I thought so.

Walking into the waiting room I saw how pale Craig was. My father and George were trying to comfort or distract Chad from us as Craig walked toward us.  This sounded alarms off, as this could only be bad news.  Craig looked like he was in a trance, as he broke down and said he was sorry. He explained that Tracy had broken her neck and was airlifted to the Eugene Marais hospital.

I then walked over to my father; he was gray in complexion and was sobbing. This was bad as he is a hard man and never shows much emotion. We both hugged each other and began to sob. I was so pleased and extremely surprised to see how unscathed Chad was. At 10 months old you are weak and vulnerable! This little fellow had angels on his side.

Not much was said after this, as there was too much confusion and disbelief. We decided that my father and George would take Chad and Rocky back to Nelspruit. Monica, Craig and myself would head towards the Eugene Marais, and I had no idea where it was. Craig said he knew where it was, Pretoria. We squeezed into the front of my pick – up (small van), and headed out. This part of the trip seemed like an eternity. When you sit three up front in a pick – up you will understand how small this space is, when three adults sit shoulder to shoulder, and as hard as you try not to cry and sob, you are spontaneously affected when one starts the reaction. Between the sobbing, Craig tried to explain what happened.  Somehow we all still tried to convince each other that all would be well.  Little did we know.

Making sense of it.

While driving I started to process the information received so far. I recall when speaking to Tracy on the mobile, at the scene, she said she was fine with no pain.  She clearly said she couldn’t feel her legs.  Somehow in the heat of it I chose to ignore this important clue.  I also assumed she was holding the phone on her own. Even when speaking to Craig at the scene, it sounded like Chad was been held and comforted by Tracy.  NOW IT STRUCK ME, TRACY’S NECK MUST BE BROKEN. 

Craig still had hope that this would be mended.

Eugene Marais and Pretoria.

We arrived at the hospital after 1am in the morning. We were told to wait for the duty specialist. I can’t recall whether he spoke to us separately or together.  But the message was clear; Tracy was critical and was in theatre. We stayed for what seemed like an eternity, before we were told that she was stable and would only be able to see her later that morning. Craig had two close friends in town, so we decided to ask for a place to sleep. Sleep was not really what happened, as we were all over tired and stressed. We left at about 7.30am to go back to the Hospital.

Twist in the tale.

It was at this stage I was starting to ask questions: WHY?  HOW?  WHAT NOW?  I was angry and frustrated. The place we slept at was an up market, secure complex. Yet when I got to my vehicle I was shocked to find the vehicle had been broken into.  For a brief moment I forgot about Tracy and her predicament. I instinctively tried to gather evidence and take stock of what was stolen.  I climbed the wall and followed the worn path in a neighboring river area. It was here where I found most of my cassettes, old photos and I.D. book. How dare someone do this to me at a time like this? What more could go wrong? These were all frustrating question that ran through my mind.

I was faced with a harsher reality, my sister, lying in hospital fighting for her life.  What was I thinking? How dare I waste time on such trivial things as some materialistic item stolen from my car?

This twist would be major factor later, as I will explain!

Back to the issue on hand

On returning with Monica and Craig to the hospital, we discovered that not much had changed. Tracy was still critical and there was no good news about her neck.  My parents arrived that morning, as did Craig’s parents. What good actors we had all become!  We all convinced each other that all would be well. Tracy would be some super human and come out of this o.k. People sat around and tried to make idol conversation.  It was very awkward.

To see Tracy with a tube stuffed down her throat was just too much for me. I tried to go into that room as little as possible. I guess not been the most optimistic guy around, I choked and panicked.

The day in the hospital was a blur to me, memories came and went. People from all over came to try give their support. All I wanted was doctor’s answers and explanations on how we can fix this.

Doctor’s bomb!

As I mention, the day/s in the waiting room was all blocked out of my mind. The only memories that would stay, were the painful medical facts. By now I was really angry, frustrated and even resentful to the people that had a part in this tragedy, whether directly or in directly.

Who could I blame, where would I get answers, who would take responsibility and what next?

It was then when amongst all the emotions and activity I recall the doctors calling Craig aside. They were going through x-rays. This again pushed my adrenaline levels into the red. I noticed Craig turn from pale to white.  What was the doctor possibly explaining that we never already knew?

It was then when the door opened and the doctor called my father, Monica and myself closer.

We were seated in the cubical/room and with Craig sobbing and shaking his head in denial, we all knew we were about to find out the worst.

The doctor interpreted the x-rays one at a time and explained the severity of the break. He explained what the operation had achieved on Tracy’s neck and the reasoning behind it.

When I saw an x-ray clearly showing the break in the vertebra and the thin spinal cord damage, I realized this was it! No man would be able to mend this.

To top this all we were explained explicitly how Tracy’s life would change, including ours.

Long road to recovery.

After the initial shock and acceptance of the fate of my sister, and after she was weaned off the respirator, we had to return to work. Our employers were unbelievably understanding and supportive with the news of my sister. We had unlimited time off to visit Tracy in Pretoria.

Most weekends we went up to visit Tracy. This again was very hard for me.

People would be quick to judge me on what I am about to say.  But then, they were either never in my shoes or too embarrassed to come out with the truth.  I would in my heart want to visit Tracy as often as possible, but in my mind I was not sure if I wanted too.  I was not sure what to say or do.  And most of all it frustrated to see her like this.

It took months of hard work for Tracy to get through the rehabilitation. She would weep on the phone and tell me she would better off dead.  Now you please tell me how to respond in a positive way to that, especially when a small part of you at this stage wondered why she was put in this cruel situation?  Maybe she was right? Was this not better for her?

Yes, you read this correctly! There were times when I agreed with Tracy’s feelings.  I am honest and human!

Soul searching!

I have never been a religious person. But somehow Monica convinced me to try doing this right and getting support from someone that could help.

Desperate and with a lot of doubt in my mind we made an appointment with our local Methodist priest. That night prior to our meeting with our priest I was thrown another “curved ball”.

My great friend Craig Schutte had tragically lost his sister in a bazaar accident, about a month before Tracy’s accident. Never having this experience before it was difficult to console and support him through this difficult time. Now he had barely got over his sisters loss (not that you ever do), when I had to phone him and tell him my sister was fighting for her life.

I told him how angry I was that someone had broken into my car and stolen stuff.

Craig went quiet and gave a nervous laugh. Confused at his reaction I asked for an explanation.  He never told me this but when down in Cape Town preparing to cremate his sister, and lay her to rest. He also had mysteriously similar happenings to him.

Let me remind you what happened to me that first night in Pretoria.

My vehicle was broken into, things were removed, things casually sorted through on a bushy trail close by.  I discovered this the next day.

Craig’s vehicle was broken into the day before his sister’s funeral, the hand -made box to hold his sisters ashes was removed.  The next day the box was discovered by his sister’s Fiancé on a bushy trail close by.

So, one could understand that this for me was too much of a coincidence. What was the message in this?

I guess I still haven’t worked this out.

Reality sets in!

Well, after a long period, Tracy returned home. This was the first step and proof of her remarkable tenacity. She had worked hard to be back home! We were all excited and willing to support. We all had convinced ourselves that we would be there unconditionally.

Seeing Tracy at home was yet another reality check no one can prepare for.  You soon realize that without the professional help from the nurses, you are not equipped to deal with this drastic change.

I would often find myself hanging back in hope that someone else would assist before I did.  This was not because I was lazy or resentful.  This was because I was nervous and unaccustomed to dealing with someone that couldn’t move, feed herself or go to the toilet by herself, in short a Quadriplegic!

This was something you only learn how to deal with in good time!

Thanks For Angels.

Tracy with time became amazingly independent in her own way. She has trained help that take all pressures of her personal and daily routines from the family.

The most amazing and touching thing to see, was that certain friends of hers were there for her physically, financially and spiritually. There were times that I felt left out and wished I could offer more.

Tracy would often say that she never wants to be a burden to her family or friends.  This would never be, as she was would never expect or demand any assistance from them. She would make use of her caregivers. Tracy must be the most selfless individual I know. You would never feel obliged to help or assist. There are times I feel guilty that I don’t do more. Then there are times I feel thankful she doesn’t expect more.

Moment of truth.

After all said and done, I can honestly tell you this…

To have a family member in this situation is not easy. It’s not something you wish on your enemy.  It takes time to adapt to. The sooner you accept the fact and get on with this, the better. You may think you are on your own, and there may be times you are not sure where to get help. It is then when you will be surprised how supportive people can be. You should never be embarrassed or shy to ask for help. People generally all want to assist, but it’s human nature to pull back. I should know this, I did this many times. Tracy has raised her child Chad into a fine, normal boy. I still see visions of Chad at the age of 2, offering his mom chips at a braai, when everyone else neglected to do so. The power of words and speech is often over looked as an important tool in education. Trac being a teacher realized this and in my opinion perfected this. It still amazes me how strong she is. Sure she has her moments, wouldn’t you? Our relationship hasn’t changed a bit. We still snap at each other, we still laugh at each other and still love each other. I never feel embarrassed by her presence. I only see my sister, a mother and an inspiration to the world.  I am still angry and frustrated with the whole situation, but never resentful or embarrassed to have my sister back. I am thankful she is alive, even though she’s not quite kicking. 

She is my spiritual hero.

 My dearest Trent, I will never stop loving you.  Thank you for being in my life and for everything that you mean to me.  Thank you for sharing your beautiful wife, Monica and your two gorgeous daughters, Bianca and Simone, with me.  Love you all.

Sink Your Teeth into This.

A letter to my son’s orthodontist.

Dear Doctor

You came highly recommended by my dentist, whom I trust.  Being a caring, conscientious mother, I immediately called to make an appointment for my son, Chad.  The first question I asked the lady, who answered the phone, was whether your consulting room was wheelchair friendly.  After she explained that it wasn’t, I politely declined to make an appointment.

I felt a brief moment of disappointment, wondering why my dentist hadn’t taken that into consideration.  But, over the years, we have grown close and often my friends forget that I am disabled.  Besides, she possibly has never had a need to visit your consulting room herself and she probably never gave it a second thought.

So, I called the only other orthodontist in town (that I know of).

You see, for me, it was so important to be able to accompany Chad to his appointments that I was even willing to compromise, going against my dentist’s advice, by going to another orthodontist.  It’s not that I didn’t trust the other guy or that I had heard some scary stories about him; it was just that I would have preferred to have gone to the one my dentist had suggested – you.  After all, she knows Chad and I well and she knows exactly who would suit us best.

Sadly, the lady who answered the phone there was not even apologetic as she promptly told me that I would not be able to get into their rooms and that they were in the process of moving to another premises.  When I asked her if the other building was wheelchair friendly, she said she didn’t think so.  By then, I was a little irritated, more so by her don’t-care-attitude than anything else.

You know, there are many advantages to living in a smallish community, as I have had the privilege of experiencing firsthand since my accident.  If it weren’t for the love, care and support of the wonderful people living in Nelspruit, I don’t know where I would be or how I would cope.  But, there are also some disadvantages like not having a choice of specialists and having to put up with obvious contraventions to the accessibility rights of people living with disabilities in South Africa.

So, I was left in a predicament.  My son needed orthodontics and I was out of options.

Accepting, that my son’s well-being and dental health care are my first priority, I once again called your rooms to make an appointment for him, knowing that I could rely on family or close friends (as usual) to get him there.

The lady I spoke to very kindly offered that some of your staff could lift my wheelchair up the steps.  She obviously has no idea of what it’s like to be paralysed from the neck down. 

You see, my power-wheelchair probably weighs close to 70 kg, without me in it.  If you saw me, you would automatically assume that I am as light as a feather.  But, I’m an absolute deadweight.  Besides, there is way too much risk involved, for all parties, in trying to lift an awkward object, like a heavy wheelchair, up a steep flight of stairs.  Believe me, it is a near impossible task trying to keep my balance alone.  That is on top of the humiliation and the indignity of it all. 

How would you feel if somebody had to carry you into your rooms?

So, with much trepidation, my dad brought Chad to you for his first appointment, while I sat at home with every fiber of my being aching to be there for my son.

Do you have children?  Can you imagine not being there for your child when he feels scared or anxious?

Dentists are scary and invasive, with a tendency to get on one’s nerves.  And I don’t mean to insult you in anyway. 

But, the discomfort of having a bright spotlight shining into your face, while a strange man’s big hands work with sharp, metal instruments in your mouth, drilling and creating noises which set alarm bells off in your head, leaving your ears ringing, and trying your best to keep your mouth open, controlling your tongue from instinctively pushing your tools away have been known to send the mightiest of men running for their lives.

Most people, I know, hate dentists and avoid going until they absolutely have to, which, I know, is not really the right thing to do.  Please don’t take that personally.  It’s not like we have anything against you.  But, I would love to know, what on earth motivates somebody to take up a profession, doing the same old grind every day, staring into other people’s disgusting, dirty mouths?  You can also hardly have a decent conversation because even the most intelligent of your patients can only manage a barely audible mumble.  It must be so boring. 

And people think quadriplegics are weird?

Anyway, there have been times when I was so thankful that there are strange people like you in this world.  I remember developing an abscess one Sunday.  I couldn’t wait for the following day so that I could make an appointment with my dentist to be relieved of the pain. 

I also have a full understanding of your value to society.  

Now that I am disabled, I constantly have to deal with people staring at me.  I know that they are just curious but, it doesn’t make it any easier.  Mostly, I make eye contact with them and just smile.  You would be amazed if you knew how much emotion I hide behind my smile every single day.  At least, my teeth are reasonably straight.  That is thanks to expert orthodontics many years ago.  I’m extremely grateful to my parents for insisting that I wear braces as a kid, even though I hated every minute of it. 

So, if I am going to put my own son through the same torture, the least I can do is to be there with him, like my mother was.  You denied him that right.  And me, that privilege.

Chad is brave with strength of character way beyond his 13 years.  To be honest, he probably didn’t need me to be there as much as I needed to be there for him.

Do you have any idea of how hard it is for me as a mother not to be able to be there for my son?

You have been treating my son for many months now.  You called me once.

I really think that you need to make a plan to get your premises accessible for these wheels.

What happens if I need orthodontics again at some stage?  What about a disabled child?  Don’t you care that you cannot accommodate all patients irrespective of their ability to walk or climb stairs?  Isn’t there some type of oath that you have to take?   Or is it simply just about making money?

All I want is the right to be a decent Mom to my son.

Is that too much to ask?

Driving Miss Tracy

We were sitting at a restaurant – on the deck overlooking a busy road and car park.  The location was not wildly exciting.  Exhaust fumes and seafood are not meant to be complementary, I know, and the annoying droning of engines, stopping and starting, spoils any attempt at creating a romantic-dining ambiance.  Eventually, we were forced to sit back and enjoy the people-watching-entertainment, getting up close to pass comment, sharing a laugh whilst competing against the blaring background music which seemed intent on drowning out any significant conversation.  Fortunately, the company was hot, hot, HOT – perfect for a lazy, balmy, Summer’s afternoon.

We watched as a bulky, pot-bellied man attempted to parallel park his rather large van.  He was successful, but only the second time round.

Amused, I wondered aloud if I could still do that, not doubting the answer for one second.  I reasoned that driving must be much like riding a bicycle – once you’ve learned how to do it – you never forget it.  Right?

At that very moment, every fiber of my naturally-competitive-being ached to climb into a car to prove to the world, and my man, that I was still a good driver despite his apparent indifference.  Perhaps, it was my own insecurities because women are often knocked, by society, for their driving skills and constantly made to feel incompetent behind the wheel of a car.  Or, maybe, it is my primal need to prove my worth to humanity in spite of my disability.  I don’t know.  But, I’ve never known a man to admit that he was an awful driver – or a clumsy lover for that matter.  I think women could learn a thing or two from that arrogance confidence.  Don’t-ya-think?

Anyway, just the mere idea of driving a car again got me thinking all melancholically, leaving me feeling like the bug on the windshield.  Doesn’t life just suck sometimes?

Everyday my newsfeed on Facebook or Twitter is filled with raging status-updates from frustrated people trapped in so-called rush-hour-traffic, despite nothing moving anywhere for hours on end.  In a sense, they feel as stuck and confined as I do.  And yet, I would give anything to swap places with them.

To me, a car represents power, freedom, privacy, independence and more – everything I could ever wish for as a quadriplegic strong, liberated woman.  A car is sooooo sexy!

I miss being able to pull up to the red-traffic-light, right next to a drop-dead-gorgeous guy in a fancy sports car, look him sassily-dead-in-the-eyes over the top of designer sunglasses, rev the engine, drop a gear-or-three, screeching off at top speed.  Yes, I am a flirt!  But, only when I can get away – fast!

The competitor in me misses the challenge, accomplishment and satisfaction of reversing, and skillfully maneuvering, out of a difficult, no-freaking-way-out situation or squeezing into a tiny, how-the-hell-did-you-do-it space without so much as a scratch on the paintwork.

The control-freak in me misses that feeling of domination as you change the gears, accelerate shamelessly and explore the power of the engine whilst turning that wheel.  Yeah, baby!

The adrenaline-junkie in me misses the flutter in my tummy as you press your foot down on the pedal, a bit harder, to go just a little faster, knowing that you are already over the legal speed limit, hoping you won’t get caught, and if you do, wishing that the traffic officer will succumb to your bashful, flattering excuses.  But… but… oh, Officer!

The hopeful, wannabe businesswoman in me misses the smell of the plush-new-leather upholstery, giving you a sense of classy affluence albeit somewhat false, knowing that the bank owns every-shiny-darn-inch-of-it and you’d better work your butt off if you’re gonna keep it. 

The next “So You Think You Can Dance” finalist in me misses the opportunity to do the oh-so-sexy-upper-trunk Salsa to the crooning voices on the radio.

The budding pop-star in me misses the chance of turning up the volume louder-than-you-can-sing, on the more-expensive-than-your-car sound system, to drown out your horribly-out-of-tune voice as you belt out your favourite song, so that not even Mr. Simon Cowell will deny that you are America’s next Idol. 

The rock-star in me misses the wild, head-banging through an ear-splitting rock song on the stereo as the car pulsates through the traffic and the other drivers shake their heads at you in pity.

The Dr. Phil in me misses counseling all the potential road rage disorders using a sign-language-that-only-I-can-understand involving a very effective middle finger.

The Oprah in me misses listening to live chat shows and having deep, meaningful conversations with a most profoundly-persuasive inner-voice, which only seems to come out in the privacy of a car, and then, in the real world, you are left a bumbling idiot.

The chocolate connoisseur in me misses devouring a slab of smooth, Swiss chocolate, on the quiet, with only your own guilt as witness, that is, until you confess all to your scale in the morning.

The little girl in me misses craning my neck and sneaking a glance in the rearview mirror, in anticipation of hearing the fairy godmother whispering: “You, Snow White, are the fairest of them all”, that is, only after I have dug the boogers out of my nose, despite subconsciously hearing my mother’s voice, nagging me to stop.

The dreamer in me misses the comfort of a temporary escape into my own, fantasy world away from all responsibility and the harsh realities of life.

I miss the privacy of the car as a place to express my deepest emotions – my joys, hurts or anger – and to just be me, without judgment from anybody.

I miss…

Oh my God, this is driving me crazy.  Take away the keys.  Quick.

 

Quadriplegia for Dummies

Quadriplegia (my life) For Dummies (yeah YOU).

It took me a long time to understand what it means to be a quadriplegic.  Most of you cannot begin to imagine what my life is like.  I’m assuming that many people would like to try to understand my condition because I am asked about it repeatedly.  So, I thought I would put together an easy-to-understand piece explaining everything to you.  I must just emphasize that each of us is unique and we experience our abilities – and disabilities – differently.  This is from my personal perspective.

Each of us has a backbone – except, of course, if you are too weak in character, apparently.  It is also called the spinal column which is a communication channel for the brain.  It is made up of vertebrae, discs and a spinal cord.

Vertebrae – 33 funny-little-roundish-bones with holes in the middle which are attached to one another to make a tunnel; the last four are fused, making up the tailbone.  Whether you believe in Evolution or not, it doesn’t matter.  Wag it, Baby!

Discs – each vertebrae is separated by this soft cushion.  Bend it, Baby!

Spinal cord – a bundle of nerve cells and fibers wrapped together like electrical-scooby-doo-wire going all the way from the brain, through the tunnel to the lower back.

The spinal cord enables your brain to communicate with your body.  The brain sends and receives electrical signals via the spinal cord, every second of your life, giving instructions to your arms, legs and other body parts to keep you on the move.  Come on, Baby, shock me!

When an injury to the spinal cord occurs, the flow of information from that point down is stopped.  Permanent damage to the spinal cord will prevent individuals from moving, leaving them paralysed.

Paralysis is the loss of control over voluntary movement and muscles of the body.  It is also the loss of sensation and reflex function below the point of injury, including autonomic activity such as breathing and other activities such as bowel and bladder control.  Other symptoms such as pain or sensitivity to stimuli, muscle spasms and sexual dysfunction may develop over time.  SCI patients are also prone to develop secondary medical problems such as bladder infections, lung infections and bed sores.

Disability is any restriction or lack of ability to perform an activity in a manner considered normal for a human being.  But, what is normal?

I had a car accident and broke my neck at the 4^th Cervical vertebra.  My spinal cord was stretched, pulling many of those scooby-doo-wires apart, but not all. 

At this stage, God is the only electrician who knows how to put those wires back together again – and even He is obviously struggling or He would have done it by now.  Surely?

However, new research proves that spinal cord repair and regeneration is possible.  But, for now it’s: We are aware of the problem.  We are working on it.  Please be patient

So, for now, I am a C4 quadriplegic (incomplete). People often confuse paraplegic with quadriplegic.  There is a huge difference. 

Paraplegia – loss of sensation and movement in the legs and in part, or all, of the trunk usually resulting from an injury to the spinal cord below the neck (thoracic or lumbar area).  Basically, you are screwed!

Quadriplegia (or Tetraplegic) –  total or partial paralysis in all four limbs, including the trunk, usually resulting from an injury to the spinal cord in the neck (cervical area).  Basically, you are double screwed!

Complete – means total loss of function and sensation below the affected vertebrae.

Incomplete – means only partial loss of function or sensation below the affected vertebrae.  I can feel you, Baby!

I use a wheelchair to get around.  It is my source of freedom.  It gives me independence and power.  I’m most certainly not confined to it.  As, after all, I’m not some evil murderer or prisoner confined to a jail cell with handcuffs.  I leave those for the bedroom.  Mmmm, maybe that makes me just a little evil.

I am also not wheelchair-bound because I’m not stuck to it permanently with some sort of super glue.  I’m also not tied to it like some mad-rabid-woman-on-a-leash.  And, I sleep in a bed – just like you do.  Okay.  Okay.  Not only sleep.  The only difference is that I have a special-egg-shell-type mattress on my double-bed to help prevent pressure sores.

Pressure Sore (or Bed Sore) – a potentially dangerous breakdown of the skin due to pressure on an area of the skin resulting in infection and tissue death.  It can get really ugly, Baby!

Many quadriplegics die as a direct result of complications related to pressure sores.  Scary!

I have to practice a strict routine of pressure release which is relieving pressure from the butt every 15 minutes in order to prevent pressure sores.  Come on, Baby, bounce my butt!

I shower every day on a commode which is a shower-come-crapper-chair-on-wheels after my bowel program.  My bowel and bladder have to be manually emptied, by my carer, every day at a specific time to encourage a habit program so that regularity can be achieved.  So, basically my life is ruled by the clock.  No, Baby I don’t wear nappies – I’m not incontinent.

My bladder has to be emptied intermittently, usually 4 hourly, using a female catheter which is a short, flexible, plastic tube resembling a thin straw which is placed in the urethra, extending into the bladder in order to empty the urine into a clear urinal bottle.  It is important for me to see the colour of my urine for early detection of a urinary tract infection (UTI).  No more moaning about leaving the seat up, Baby!

By choice, I use an indwelling, Foley catheter, at nighttime, which is a long, thin, flexible, silicon tube inserted through the urethra into the bladder and held in place with a small, fluid-filled balloon, draining continuously into a plastic urine bag on a special stand.  No wetting the bed, Baby!

There are lots of other things I can’t do like coughing, blowing my nose, spitting and sneezing which puts me at risk of getting pneumonia.  But, if my carer applies external pressure on my diaphragm it helps to increase the force of air in order to clear the respiratory tract.  Oh, Baby, squeeze me tight!

Twice a week I am exercised, passively, by a physiotherapist while being strapped to a tilt table and elevated into a standing position.  Yeah, Baby we can do it standing!

The weight-bearing and prolonged stretch is important to delay the onset of osteoporosis (loss of bone density) which is common after a spinal cord injury.  She takes each of my joints through its full range of motion.  These exercises are designed to maintain this range and prevent contractures and spasticity.

Although it’s embarrassing, spasticity is not always a bad thing because it acts as a warning mechanism to identify pain or problems in areas with no sensation.  It also helps me spot bladder and bowel problems, maintain some circulation and work my muscles.  If my foot dances, turn up the music, Baby!

I’ve learned to listen to my body.  It has an amazing way of telling me things, especially, when something is not right – anything painful, uncomfortable or physically irritating.  Baby, I get goosebumps, and hot and sweaty!

Jokes aside – this is serious!

Autonomic Dysreflexia (Hyperreflexia) causes the blood pressure to rise to potentially dangerous levels.  And can develop suddenly.  I usually get a pounding headache, a sweaty upper lip and I’m extremely restless until I have identified the problem and sorted it out.  It’s most often my bladder which is too full or my bowel needs to be emptied.  Sometimes, it’s as a result of pain caused by an ingrown toenail or something similar.  If not treated promptly and correctly, it may lead to seizures, strokes and even death. 

I also feel a constant pins-and-needles-burning-type-of-pain over most my body which I have learned to live with.  Hmmm… I guess we all have our issues.  Baby, I have a whole magazine stand.

My First Time: Dancing with Waves

Aaah first-times.  Mmmm….

No, I’m not talking about only sex.

I’m talking about those defining moments in our lives.

Like an old photograph, most memories fade.  But somehow first-times stick in our minds forever – some good, some bad – shaping us – influencing our thoughts, molding our opinions and manipulating our choices for the rest of our lives.

But first-times don’t necessarily only happen when we are young.  As unique individuals, each of us experience first-times at different stages throughout our lives until the first time we die.  Some we will always remember fondly and others we will choose to ignore – but, never forget.

Recently, I had a very special first-time.

I was visiting Sexy Legs in the Windy City.  It was a glorious Summer’s day.  We were at the beach.

And I was watching my son swimming in the ocean for the first time.

The last time I saw Chad in seawater he was 10 months old.  I remember feeling blissfully happy as I lay on the beach watching him play in the sea-sand and water for the first time in his life.  I was content – believing foolishly that I was in control.  Days later our, seemingly perfect, lives were shattered.

Now here I was again watching my boy – fiercely maternal and proud as can be.

But, it was different. 

I was not the same – no longer young, reckless and carefree.

The harsh realities of life had taught me stuff – gratitude, wisdom, restraint, humility.  I was no longer able to physically go onto the beach with him.  That is tough.  And cruel.

He too has changed.

He is already 13 with his looks more chiseled and beginning to resemble a man.  Handsome.  Strong.  Adventurous.  Bold.  And aware.

Oh my God!  How did my baby get so big, so quickly?

We first walked out onto the pier together, humbled by the enormity and power of the ocean.  We spent a few minutes at the end, simply appreciating the breathtaking view.  The sound of the ocean beneath us was drowning out any other sounds – including my complaints about my hair constantly blowing into my mouth.

I felt as if we were on a platform and the waves were dancing beneath us to the happy tune playing in my heart.  I wanted to savour every moment of this first-time experience with my son.

He hugged me tight.  And kissed me on the cheek.  Mom, I’m going to swim.  Okay?

Not before I gave him strict instructions and explained that he needed to stay between the red flags so that the lifeguards could keep an eye on him.  Ja, I know mom.  I know.

Okay boy.  Just be careful.  Love you.

I watched as my boy made his way down onto the beach.  It was packed.  So was the piece of water between the flags.

I was anxious but excited.  My heart wanted to burst with joy and yet I wanted to cry in sorrow.

Sexy Legs draped his arm around my shoulders and drew me close, in comfort.  I looked at him – just for a second – connecting – knowing that he understands, everything.

I looked back across the swimming area and was instantly irritated with myself for taking my eyes off of Chad.  I could feel my heart skip a few beats in panic as I scanned the half-naked bodies on the sand and the multitude of bobbing heads in the water, searching for my child. 

I spotted him moments before he dived into the surf.

As he surfaced again, I looked for a sign – anything – to be sure that he was mine.  But there was no mistaking his body language – his mannerisms and gestures unique, yet not different to mine or his dad’s.  I felt much like a mother zebra instinctively recognizing her foal among all the others.

He waved.  I nodded my head.  He gave me a thumbs-up.  And I smiled.
Just that one exchange between a mother and her son was enough – I knew that I would never forget this first-time.

The three of us spent a long time together at the beach – Sexy Legs and Chad on the wall, me on the walkway.  We spent time talking to one another, watching the other people and laughing our heads off – especially after Sexy Legs put a cable tie into my hair (in desperation) to keep it from constantly going into my mouth. 

It was a perfect day.  And a first-time to be cherished.

Please share your recent first-times with me too.