Irony, like Karma is a B...

I love Irony, it’s humorous and yet truthful. As an adult with TSC there is little to worry about – when your epilepsy is stable. Besides the occasional seizure due to a vitamin deficiency, or slight hormonal changes. Times when you are seizure free, tend to occur less often, compared to when you are a child. The Irony is, during these times I tend to “forget” (for just a moment) about my condition. Life becomes an open door and I feel unstoppable.

Recently my Hubby and I put together an exercising regime, which includes climbing, hiking and cycling. We started last month. It was awesome! Until the day I decide to start a new project – “Climbing with TSC”; the Irony is that was the day gravity overpowered me. While doing a bouldering route at City Rock; I attempted an 6A. Upon jumping for the second, hand hold or “Jug” on a 45˚ overhang, I uncontrollably swung out… falling suddenly to the mat, severely spraining my ankle.

Now I’m held up for SIX WEEKS! With crutches and a moonboot, as a new way of manoeuvring. This is a strange and tiresome way of getting around. However, I now have a new- found respect for people with physical disabilities.

 I look forward to climbing again. So, keep a look out for “Climbing with TSC”. I’m seriously considering giving the bouldering a break though, until such time as I learn to fall properly. When I come back, I may just stick to the large walls, with a harness and belayer to catch me if I fall. In the mean- time I’m going to focus my energy, on resting this foot. Hopefully Irony doesn’t decide to pay me another visit.   

TSC is a Mountain.

I have a friend who is a mountain climber, a dangerous sounding sport right? However when I asked him about it, he confidently stated; “It’s not the sport that is dangerous it’s gear fear.” Gear fear is when you don’t believe that the equipment you are using will keep you safe. It is the same reason skydivers’ release their parachutes too early, ending up tangled, as the parachute malfunctions. This got me thinking… I have been in and out of hospitals for 23 years, and yet I am still sceptical of the usual set of scans and new medications. Why??

What triggers these internal concerns?? Theoretically it is gear fear. What if the medication does not work? What if the MRI or EEG machines malfunction? My worst has always been what if I have a seizure, because of the medication, and never wake up?

Yes children have these thoughts too. Ever since I was old enough to understand, I have had these worries. Parents tend to forget that children (regardless of age) do understand. It is natural for parent to try and hide their fear, but children pick up on it, and it becomes their fear. That is most dangerous part of climbing this mountain.

However if we just trusted that the mechanics who built the machines knew what they were doing, and that the doctors who use them, know what they are doing, our stress levels would be halved. Furthermore medication technology is being developed each and every day. So if one medication does not work, you need to move to the next one until, you find one that does. Eventually, balance is found, and results or solutions are established.

 

Christiaan Minnaar: 

My Husband

Mountains are not easy to climb; a lot of strength and discipline is required. Even so, being afraid of the equipment, (used to get you to the top) or giving up completely is not an option. TSC is a mountain. We have to keep climbing. Perhaps one day we will reach the top. Perhaps one day, a cure will be discovered.           

Spectacular Bonding Moments.

Then you get those moments... moments when you are seizure free, and you forget all about the 'what ifs'. Moments when you feel like climbing a mountain, only to yell at the top of your lungs; "Come on world! I've got this!" Moments of pure bliss. 

Recently my husband and I, (along with the rest of the family), took a little trip to Mtwalume KZN. For the first time, in a long time, I was not calculating the distance to the nearest hospital, I was not worried about the amount of medication I had, or when I should take it, I was just... present. Some of you may be asking; "So what?" or "How is this relevant to me?" Well the thing is... I am want you would call a 'happy worrier'. I don't usually feel as though I have thought something through thoroughly, if I have not worried about it for at least 24 hours!! Silly I know... but to some extent this vacation was somewhat a small accomplishment for me.

Along with this, I feel as though some of you could relate to this. Whether you are an adult, a parent, or a child with TSC, we have all to some extent allowed it to hold us back. Our worrying hinders us from experiencing the world around us; because we have so many 'what ifs' trudging through our brains, in super slow motion. So in a way, this story is relevant. 

During this holiday, I was hoping to cautiously challenge myself, aiming to engage all my senses in feeling my surroundings. I began, (naturally) with the ocean. Swimming in the sea, has not been at the top of my 'to do list' for about ten years. Usually, I sit on the shore observing people, while reading or writing. However, not this time. "Come in..." my husband requested coaxingly, while gently wading into the water. Hesitatingly I paused as the water reached my knees. My husband, father, and brothers on the other hand, waded in with a Body board, up to just before the breakers.Standing there, watching them, I embraced the ocean with all of its power. Initially the waves surged forward, forcing my knees to lock, before suddenly retreating as if to intentionally trip me. Over and over this happened. Tasting the salt. Hearing the crash, sizzle, of the waves. Smelling the wet sand. Seeing the horizon go on for kilometers before me. It was breath taking! 

Eventually, wading to the shore where my mother sat, she appeared slightly concerned. As she peered up at me, I couldn't help but giggle. "You see the waves ma?" I inquired rhetorically. "That is what my brain feels like when I have a seizure. As the waves build up, I feel the seizure approaching. Once the wave crash, the seizure has landed. As the race to the shore once again, I feel the after effects." I smiled. "I was worried about you, so far in." she responded gazing out at my father and brothers. It was relieving to finally give her a physical visual, after all these years, of clumsy explanation. 

Mtwalume Beach

Our vacation ended up being a spectacular bonding moment for us all. No one worried, no one calculated distances to or from medical services. Joy and splendor reigned supreme, and for a split second it was as if all of Life's bliss radiated from the ocean itself.                  

Living with TSC; It may seem daunting... But it doesn't have to be...

Have you ever felt like the world was against you? 

Have you ever felt like life is impossible, and you can't go any further? 

I know I have. It was during one of these moments, were my parents gave me some remarkable advice.

"Your father has a motto," my mother said to me one evening; "A life without strife, has no colour." 

I was thirteen at the time. Confident that I understood what it meant, I would repeat it over and over again when times got tough. However one day upon visiting my doctor, it occurred to me; my understanding was impaired.

The quote does not mean; "Go looking for trouble, because that will make your life interesting." Nor does it mean; "That you have to suffer through everything negative, because that is your lot in life."

The quote means; " A life without rivers to cross, and mountains to climb, has no adventure." 

Looking back on my childhood, I now realize that there were many interesting adventures, and learning experiences. Whether you are a parent with a child who has Tuberous Sclerosis Complex, or you, yourself have TSC, or even if you have a family member with TSC, I would like to share some of my adventures with you. 

Embrace the Adventure