Detour on the road of life…

During the journey of every human being’s life there is inevitably some kind of experience that comes to you in a flash of light and challenges you to the core.

Mine came in the form of epilepsy at the age of about 12 or 13 years old.

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For my ballet concert a year before my epilepsy diagnosis, my precious mother designed me this gorgeous outfit!  I was the wicked witch of the West.   Interesting timing as epilepsy was often blamed on witchcraft…definitely not the situation in my case!

Somewhere, somehow during my first year in high school I became terribly ill with encephalitis which resulted in high temperatures and excruciating headaches.  Being a happy, healthy and strong child my parents became concerned, and a visit to the doctor ended up in a flurry of neurologists,  a few days in hospital and then recovery time at home.

I was just starting to feel better and knew of my Standard 6 (Grade 8) trip to one of the well know game ranches in Natal (now called Kwa Zulu Natal), and nagged my mom relentlessly to let me go along.

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Probably my first selfie in 1984!  A pic I took of myself during a half an hour period of solitude in the bush on Nyala Game Ranch.

I was probably not well enough to be travelling off away from home with a giggling batch of 12 and 13 year old girls and sleeping on a thin mattress in a dusty rondaval (circular hut with a conical thatch roof).  But oh no…nothing could stop me.  My Taurean stubborn streak was in full charge and I made sure I was on that bus with my new high school friends.  My newly developed strong sense of FOMO (Fear Of Missing Out) drove me to convince my parents I was totally fine, and they waved me off with big smiles and a bag half filled with goodies for midnight feasts.

In retrospect, it’s so interesting to think how driven I was to be part of something that led me to miss out on so much in the future.  It take’s my breath away when I think about it, and compounds my view on the vital need for each human being to work on realizing how magnificent they are as an individual, and that they don’t need others to complete them into a perfect wholeness.  In my adult years, thanks to an educational life skills programme called More To Life I have been able to get clear of that debilitating state of FOMO.

Within a few weeks of me returning home from our school camp, I had my first grand mal seizure which involves a loss of consciousness and violent muscle contractions.  One minute I was this happy, healthy pre-teen, and the next a confused, scared young girl witnessing the fear ripple through my parent’s eyes.  My mum’s older sister, Lorna, was severely epileptic from birth and she had struggled throughout her life to find a happy and stable balance.  My father had witnessed the hardship that Lorna and her family had endured through the decades, and so both my parents were  terribly afraid for me and what this new challenge would mean in the long-term.

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My fabulous parents at their engagement party in the late 1960’s…the glow of true love is truly effervescent!

My ability to reconcile and accept what had changed in me was non-existent, so I chose to ignore it.  As the years passed I broke my nose, my two front teeth, split my chin twice, ended up on the pavement with all my belongings being stolen by beggars, scraped the skin off the side of my face and I can compete with Harry Potter for a beautiful lighting bolt of a scar on my forehead.  My yearning to fit in and be ‘normal’ was so great, that I chose to fight against any restrictions that may prevent me from missing out on what I perceived every teenager and young woman should be experiencing.

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This beautiful image that I created is on my website homepage, and seems so appropriate for this story… I’m same, same but different.

While I was in my 20’s I met a young girl a similar age to me who was a severe epileptic.  She had about twenty grand mal seizures a day, but managed to stay in a controlled state by an enormous amount of medication.  As a result she couldn’t drive, couldn’t get a job, spoke extremely slowly, hadn’t been able to finish school and we spent two hours together sharing our life stories.  Our meeting was a changing point for me where I felt my first surge of powerful gratitude to the universe for the insignificance of my form of epilepsy.  My seizures seemed to be limited to be just after waking up.  I felt so blessed to still be able to have an active life where studying, driving, travelling, working and exploring my passions were and are possible.

A positive turning point in my health was the day my precious child was born.  It was the 11th September 2001, also known as 9/11.  This tragic day where almost 3000 people lost their lives and double that figure were injured, my world spun with the knowledge that I had brought life into the world as lives were lost. It was such a surreal moment as I lay in my maternity bed with my newborn by my side, my loved ones around me and we stared at the hospital TV on the ceiling as we saw replay’s of the aeroplane’s flying into the side of the World Trade Centre. I had new little human being in my arms who has grown up to mirror the power of that explosive day.  His relentless energy and passion for life has both inspired me to be a better human, and pushed me to my limits.

Apparently my improvement was due to hormonal changes in my pregnant body which shifted something unexplainable in my brain.  Even though the multiple wake-up calls for feeding challenged every fibre of my being, I had less seizures during this sleep deprived time than I had experienced in my teenage years and early twenties.

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Luke and I enjoying quality time together over a school project.

My current reality is that I can still have seizures if I don’t get enough sleep and get extremely stressed, but thanks to the improvement of medical science over the decades as well as vigilant doctors and neurologists, the seizures only come when I disrespect my body and thankfully not at random times of the day or night.

It’s been a journey. A journey filled with moments of fear, frustration, anxiety and anger juxtaposed with deep sighs of gratitude, wonder at the intricacy of the human body and acceptance of the things I cannot change.

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Heathrow Airport 1997:  Leaving the UK after 2 years of experiencing the glories of a working holiday visa.  My parents could now take a sigh of relief…I was coming home!

To every person who gets diagnosed with epilepsy, young or old, don’t let this strange condition break your spirit.  Reach out for help.  Globally there are incredible organizations around the world to support and educate you about epilepsy.  In South Africa there is  Epilepsy South Africa who have wonderful online support for epileptics, their family and friends.  They have a list of online brochures plus videos aimed at children which simply explain the condition, what to do if someone has a seizure and how to support the person with epilepsy.

While we’re on the topic, if someone has a seizure and you are there, here’s a couple of important things to know:

  1. Move all sharp dangerous objects out of the way so the person cannot hurt themselves.
  2. Lay the person down on their side in the recovery position with a pillow under their head.
  3. Do not try and keep them still.  You could both get injured.
  4. Do not put anything into their mouths i.e. fingers, sticks or cutlery.  Keeping the person on their side will ensure that their tongue does not fall back and block their airways.
  5. Stay with them until they have fully recovered.
  6. If the seizure continues for a few minutes without stopping, definitely seek urgent medical attention.
  7. If this is their first seizure, I would recommend to make an appointment to see a doctor or neurologist.

To every human being in my world who has been there to pick me up off the floor, turn me on my side and watched over me as I slowly recover… I say thank you from the bottom of my heart.  Thank you for the sacrifices you have made, the love and acceptance you have showered me with and the never ending understanding you have shown as I slipped in and out of acceptance with this condition we have no power to heal.

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Decades into this experience as an epileptic I have found peace and acceptance instead of shame.

Interesting info regarding well known people who’ve suffered/suffer from epilepsy:

  • Vincent Van Gogh (Dutch Post-Impressionist Painter)
  • Danny Glover (actor)
  • Lil Wayne (musician)
  • Alexander the Great (King of Ancient Greek kingdom of Macedon)
  • Hugo Weaving (actor)
  • Neil Young (musician)
  • Theodore Roosevelt (26th President of U.S.A.)
  • Lewis Carroll (author of ‘Alice in Wonderland)
  • George Gershwin (music composer)
  • Margaux Hemingway (Fashion model and actress)

“Men think epilepsy divine, merely because they do not understand it. But if they called everything divine which they do not understand, why, there would be no end to divine things.”                             Hippocrates

Adios my beauties xxx

 

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