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.