Wednesday, January 30, 2013

Getting out of the Comfort Zone?

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… 


This explains what KCers experience pretty well…

Fellow KC Sufferer Cristo Gonzales has made a great couple of videos to explain the steps of noticing your eyes go weird to being diagnosed and onwards… Very touching and confronting for myself as I really recognized so much stuff he was describing,

September 2012 - Malaysia my new home?

Skipping ahead 3 months, Australia was a good form of a mental recovery exercise in a way I guess
Work went well, my eyes played ball nicely, and mentally I was able to spent time with myself again… so all was on the up….

Don’t get me wrong, there were days my burned and hurt like a bitch, there were days where I woke up and couldn’t get my lenses in with all the will in the world for at least another hour… but overall it went well…

The only big disappointment was waking up one Sunday morning where I had planned to meet up with a couple of people, and my eyes were hurting like anything .and sadly had to cancel, the upside of this was that it was a weekend, and I had for some reason “made a deal” with my eyes to not play up during week day where I had to work…..

All in all it all went well down under.

What next now though? Back to the UK? 

Well, actually …. I ended up being asked if I was interested in moving to Kuala Lumpur…. And eh, I figured, yeah why not….. J

So suddenly, as of September, I found myself in Malaysia with a view to work and live here for quite a while, which itself has brought some challenges, admittedly some that just happened, others that I went looking for in itself, but all challenges that so far I’ve overcome, and feel damn good about….

Tuesday, January 29, 2013

June 2012 - Down-Under

So, Asia- Pacific?


Initially there was talk about Bali, then Singapore, then Australia, and we settled on Australia for 3 months and we would see what would happen next..

There was a project at a beach-side resort in Adelaide where our company was contracted to install a new reservations system.

I would go and be the main “point- man” on site and stay on in the resort itself for those 3 months in a bungalow there.

But, how would that work?
  • ·         Did I remember enough of my job to do it well?  (I had been out of the loop for 8months after all) Can my eyes cope? (don’t know that yet, we will just have to see I guess..)
  • ·         Is this something I want?  (Yes, of course….. I had already resigned myself to the fact that id never get to that part of the world until I’ve hit retirement age… and now its there for the taking…)
  • ·         3 months solitary on my own… could I cope?  (Well I was in a better place mentally anyway now, so maybe it was time to challenge myself and learn to spent time with myself again, without entering in to depression again…)
  • ·         Would there be care available for my eyes if needs be? (after a bit of an internet search, yes there was and I decided to get a spare pair of lenses  as well, just in case…)
  • ·         I’d never flown any longer then 5hours… now its was a “bit” further, how was that going to go, especially as flying isn’t much fun with RGP lenses in…. ( solution, take them out and rely on cabin crew and support cane.)

Well, before I realised it, I found myself in Adelaide, in winter time, not as glamorous as the picture that was painted to me, but hey… It was good, very good.

Sunday, January 13, 2013

Broken Skin, Broken Phone, Broken Pride


I still have quite some posts to go to bring you all up to date completely, but if you’ve been reading this blog a bit, you will know I’m currently living, in Malaysia, and am most of the time successfully dealing with my Vision restrictions…

Well, today I didn’t…

The period described in this blog has thought me many things, but one big thing id like to think I walked away with was a greater sense of humility … I don’t think I was ever an arrogant person, but we can always use a bit more humility… well, I think I left humility for what it was for a while, as It smacked me right in the face today.

As mention as a sub-header on this blog, I “stumble” on occasions… this is due to depth perception issues and just generally not seeing the best in darkened areas….
Well, over the last couple of month I have found myself navigating potholes and steps, and ditches and uneven surfaces (which are in abundance on the streets of Kuala Lumpur, I can tell you.)quite efficiently, yeah I tripped on occasions, but always regained my balance one way or another…

However, today… I didn’t… regain my balance…

I fell…. HARD… I walked out of a shop, brightly lit, into the darkens outside and did not see the step going down….

Now, I can blame it on the darkness and leave it at that… but it wasn’t the darkens that made me trip, its was the cockiness I’ve developed over the last part of the year that has made me pay less attention to my surrounding, as , after all, I had been so successful in not falling….
Well, today I learned a lesson, it doesn’t matter how successful you’ve been in trying not too fall, if you get cocky about not falling in the first place, karma comes back and bite you in the ass…
Or in my case …… Breaks my Skin, my Phone and my Pride….

A welcome, if slightly painful lesson

Thursday, January 03, 2013

May 2012 - What now?

So, life was nicely hobbling along.

So far its may and 2012 had been pretty ok, apart from the end of a 4yrs relationship that is of course… but it was mostly pretty good:

I had found out what was wrong with me, I had discovered its manageable….  A challenge at times…. but definitely not the end of the world…. I had gone back to work, with mixed but mainly positive results. I had starting Rowing, and had started a healthier lifestyle, had moved into a house-share that had become an extended family instead of just a house-share.

All was good, very good, until I got a phone call from one of the managers from work, an hour orso after I had gone home for the day…

“Eh, Marco, we need to talk….”
(SHIT…..) ok… whats up.
“Well, what you say about a stint abroad?”
Eh? What? Sorry, come again?
“The company needs some extra for a while in the Asia- Pacific Region, and we were wondering if you would like to be that person?   “
Ehm, I guess so… (yes fucking yes… ofcourse…)
“ok, well we want to schedule a call with the boss later this week to go through some of the options, ill get back to you with a time and date ok? Bye for now”
Yeah.. .sure…

WTF just happened?

May 2012 -Help

Asking for help isn’t easy.
It’s a pride thing, its difficult when in a lot of ways you are an independent person that likes doing things by himself.
It’s an admission of failure in some ways, admitting you’re not able enough to do it yourself
It’s a form of not wanting to be a bother to another person. Even if they have pointed out they are happy to assist.
It can be seen as humiliating.
Definitely Humbling.

It’s one thing I have had to learn to accept/ do over the last 18 months or so, even after finally knowing what the problem was….

On one occasion when we had to do a “capsize test” for our Rowing club, to be able to abide by the British rowing association rules I had to ask for help, otherwise it would’ve gotten quite messy..

For this drill I had to take my lenses out… so I couldn’t see shit… so, I had to be guided to the edge of the swimming pool, where the test happened, and then to try and climb onto the seat.

Now, a swimming pool has quite an acoustic resonance, and therefor made it even more disorientating, and its was close to freaking me out for sure, but because I had made people aware of the issue, and that I needed help, things became much easier… 

Even the being flipped and landing int the water without seeing shit, was do-able, because of me having to ask for help on this one, and help was given whenever needed…

That’s how people are, most of the time they do not have a problem with helping, its us individuals that have a problem asking.