In previous post I’ve touched on the subject of being able to do certain things and not being able to do other things, or at least not the way I used to do them before….
For example in the video in the previous post KC Sufferer Cris tells his story very eloquently, and there is a part where he talks about not being able to see stars anymore….
I hadn’t noticed I couldn't see them anymore as where I initially lived when I was diagnosed I would not see that many stars anyway… but when Cris mentions this part, it was like a slap in the face… “really, even that?” and the first opportunity I had , I looked at the night sky and yep… even "that" was taken away…
I stayed at a mountain lake resort last December in Bali, and whilst one evening in the pool I looked up to the sky and just go in a funk…. No stars… just blurs….
Now, this isn’t a physical challenge at all, these are mental challenges….
I spotted a comment once from a fellow KC sufferer that said, with this disease you better have a sense of humour otherwise you’d go mad… and Cris in his video displays that as well, where he mentions well, I might not see stars anymore, but the moon is big enough so that I see it multiple times.. so beat that… J
And It just proves that there’s more ways than one, to look at your problems.
Although I can navigate my way through things properly most off the times, I do walk around with my “Blind Man Cane” in my “Man Bag” purely for a "just in case" situation… Just in case my lenses irritate me so much I need to take them out, or just in case I trip, lose my lenses and need to find my way back home… without tripping even more..
Now as mentioned sometimes things get tricky, and things get scary, due to just not seeing things the way it should be…
There was one occasion where I was flat hunting and I actually didn’t see a step coming out of the flat I had just looked at, and tripped and chipped my tooth…. So there’s valid reasons for this…”crutch” or “backup plan”. Suffice to say I didn’t take hat flat J
I have had to use the cane whilst here , not for walking support, but to protect myself from a group of school kids that were running down old concrete steps near St.Paul's Church,Malacca
As mentioned before, stairs sort of become like a ski-slope when you have KC, so you need to tread carefully, especially coming down steps… now these steps are fairly narrow, and there was this group of school kids running down, and frankly I got slightly scared… but these kids don’t know I have a problem and therefor I’m walking slowly, so I grabbed my cane out of my bag, not to hit them of courseJ but just to indicate.. “hey guys, careful here please”… and It worked
Another time where I initially wanted to use the cane was at the Batu Caves
a spiritual place where there is a climb of over 170 steps to go up, and down ofcourse J
I started of scared like shit, but then decided, no, you’re going to do this… and the going up was fine, I just looked where I was putting my feet and just didn’t look up untill I finally got to the top… and what a feeling that was….
But then the steps down, the “Ski-Slope” experience had to happen….
And after a deep breath I did it, I help the bannister and worked my way down… I slipped once, but because of the bannister I kept balance and all was good..
So good that I went back with a friend only a week or 2 later… and again did the whole thing…
Now this doesn’t seem much, but mentally it was such an achievement for me… in a way a symbol of progressions, only 10 months before I had thought we would never find out what was going on with my eyes and had slipped into depression and thought there was no end to it… and here I was on top of the world.. well.. .pretty high up in any case, in a very spiritual place and I wasn’t blind and I wasn’t depressed, I was just “getting on” with it…
Another one of these things was only last week, I went on a road trip with some people I had met over the last couple of months here in Malaysia, and I already went from on experience into another… “hugging” an Elephant, “hugging” a Python, Seeing the beautiful nature Malaysia has to offer, and I already felt very privileged as if anyone would’ve told me this a year ago I would’ve told them to be realistic and that there’s no way in the world this would happen….
Well, the day got even better after having appreciated how lucky I actually am…. As I ended up clambering over Slippery rocks and Swimming in a waterfall to then clambering on top of a massive (slippery) rock in the middle of this waterfall. Again, this doesn't sound like much, but these are things I used to not think about it the first place and just did… but now there was I chance I could seriously hurt myself by just not seeing a drop or a little step or rock in my way and trip n stumble… initially is was just happy to have been able to make my way to the edge of the waterfall over a bit of a rock path and thought yeah, this is good, but then it started niggling, what If your home and thought, damn, I wish I had….
So I started wading in, but from where I was at that point the river floor was covered by slippery and sharp rocks and it just wasn't a good feeling,… luckily my friends saw that I was stubbornly trying and sort of talked me out of injuring myself and suggested to go to another part of the river where it looked like there were less rocks to navigate and easier access to the water straight away… so I did
And as you can see by the massive childlike grin on my face I was pretty euphoric…
For me the KC journey has become a journey of pushing my boundaries, accepting the ones I really can’t break and have to live with, and just play the card i've been dealt….
I’m sure there will be “downs” here and there, but I’m pretty chuffed with the “ups” so far…