What the Walrus said.

Life has become increasingly difficult as my independence is eroded away and I’m at the point where I’m putting off going to bed because I dread having to face a new day. Then on the other hand, I don’t want to wake up in the morning having to face a day either. Catch 22.

I have withdrawn into myself and I’m sorry to say am ignoring friends and family as I don’t want to burden them with my problems or my daily grind.

Simple everyday tasks are eluding me and challenging my patience. My morning shave, shampoo and shower drains me and tires me out and more often than not I forgo it. Holding a utensil, a cup or a piece of paper is trying and my hands and fingers only last so long before becoming claw like and I have to take things slowly. Yes, I have all the help that I could ask for but my sense of humour and adventure recoils backwards at the thought. It’s one thing to have Chrystelle help me with a shower but I do not want anyone and everyone to do that or to sit at the table and be fed. That’s the line I’ve drawn and it’s an indelible line. I’ve been used to moving the goal posts of late and it worked for a while and each day's win was hard fought but even I know that the war has an inevitable outcome.

For now each day is taken as it comes but tomorrow is an entirely different story, unknown and unwanted.  As long as I can retain my dignity and not spill my coffee then it’s all good.

OF PRIDE, EMBARRASSMENT AND HUMILIATION.

This disease is stripping me of my pride, replacing it with embarrassment and giving me bucket loads of humiliation. My independence is being seriously eroded and I am now having to rely on help from others. It is one thing not being able to hold a knife and fork properly and struggling to feed oneself in the manner that you were brought up in. I am now resorting to using a fork like a shovel and although it takes a good deal longer to eat I still retain that bit of independence towards feeding myself. It is totally another thing when it comes to bodily functions and the need to use the toilet. Getting to the toilet is easy, pushbutton and Bob’s your Aunty and the wheelchair is at the toilet but of late standing up has become a problem or standing happens but turning doesn’t and then we have a problem. I push the button for help and stand there eyes closed, waiting for help whilst embarrassment enters my life. Help arrives and humiliation pours all over me as I have to suffer the indignation of being cleaned. Anger at myself and at my disease threatens to well over And at least on one occasion has done so making my words and manner aggressive. This is just not me, this monster inside me is now changing my behaviour and to me that is not acceptable. Ever since I was diagnosed I have fought to keep my temper in check, just another battle on another front but there is now a crack in that wall too. How much more damage will this disease do not just to me but to those around me? It doesn’t matter how much you apologise, the damage is already done. So, pride is shoved deep down in my pocket, embarrassment is a badge that I try to keep covered and humiliation is definitely a T-shirt that I don’t want but have. Been there, didn’t want to do it.

A swan song for "Dear John"

Oh boy have I been judged, yet it’s a knee-jerk reaction from a lot of people. All I can say is that you are not in my position having to face the same decisions. I have someone here close to me, we used to be lovers and we used to speak of the future, finding an apartment together and of living a life together. That is all gone into the melting pot of life but out of that fire and passion I have gained a best friend who loves me unconditionally. She knows my fears my worries and regrets and she knows what is going on in my head. Strangely enough we had a conversation yesterday about my choice. I mentioned that I was trying to keep my promise to keep fighting the battle for her and other people in my life. Chrystelle looked at me with her deep eyes and told me to stop, she told me it’s a promise that I can’t keep and that I should be doing things for myself not for anyone else. She told me that it pains her to see me suffering just to make other people happy and that I should be making myself happy. I had to do a turnaround and try and look at myself through her eyes and you know what I didn’t like what I was seeing and I can only imagine the pain I have caused her. I know that I’m causing other people pain but they don’t see me as I am now and some of them just have their heads in the sand. I realise there will be some people left to pick up the pieces and I am really sorry about that but all your comments about waiting for different dates for different reasons don’t do you justice and show me that you just don’t understand. You have no comprehension as to what this disease is doing to me or how it is affecting me, you haven’t seen me in years but although you know me you don’t listen to me. You care to remember me as I was, not as I am now and you make a judgement call on that premise. I have had many a discussion here with people I interact with daily, I’ve had many discussions via Skype with people affected with ms and who are in the same boat as I am. I have an American beauty and a South African beauty who think as I do and who also want the same option and control of their lives. There are some people that I haven’t discussed this with which is also causing aggravation as I’m expected for various reasons to make my intentions clear and to discuss my actions. All I can say is that this is my life that I have to live and that this is my choice to at least keep some form of dignity. So please allow me to make my own decisions based on the way I live my life not on the way you would like me to live it. I’m not about to discuss my daily life, it’s humiliating enough already living it and I’m not about to humiliate myself even more by putting it down on paper for all and sundry to see. There are many people who know me and who are supporting me and my decision even though it is causing heartache. I thank each and every one of you for your understanding. To Atheana and Sandy, yes I named you, you are two exceptional friends and I love you both dearly. Pour Chrystelle, tu es le seul vrai amour de ma vie. Merci comme tu es, Je t'aime pour toujours et après.

http://youtu.be/3CZTFsXFMgM

Enough is enough.

Okay so I am about to do something totally different, I’m going to change the direction of my blog and write about something that very few people want to talk about. That something is a small word with huge implications, far reaching consequences and a large impact on family and friends. That something is death with dignity. Touchy subject whispered about behind closed doors, frowned upon, reviled and relegated to file 13. But and this is a big but we can all make decisions for our diseased animals as a matter of course, children as young as 13 can make decisions about abortion yet those of us with one of life’s dreaded diseases that strips us of dignity, humiliates and embarrasses us, makes us totally dependent on others, rips away our independence and knocks our quality-of-life for a six have to listen to the do-gooders and lawmakers around the world and abide by their decisions. We have to live our life like it is a prison sentence, we are stuck with in our own bodies with no reprieve in sight and we have to continually adapt to our circumstances. Fortunately I live in one of four places in the world where a life choice is an option and is totally legal. But what of my friends who are in the same position as I am but have nowhere to turn to and have to resort to other methods when enough is enough. Then there is the question, when is enough enough. For each person it is totally different, I have a certain point that I will not go past and unfortunately that point is rapidly approaching. I am now at the point where I am preparing my exit strategy and keeping a safety valve in my cupboard. It took me a while to come to this decision but once that was done a great weight was taken off my shoulders and living with this decision is extremely easy. The tricky part is telling your friends and family, you have no idea of the reactions. How do you tell one of your best friends who lives by the Hippocratic oath that you are going against all the principles that she lives by? Or, how to tell a friend who is Catholic and believes in the sanctity of life? Or, how to tell the love of your life who loves you back immensely? Yes there are now people who look at me differently, some ignoring me or avoiding me but my friends are still my friends and the family that counts is still my family and my decision is being respected and understood. The love of my life is a whole different ballgame. She understands, accepts and will stay by my side but I see the pain in her eyes, I hear the pain in her voice and I feel the distance between us. We are both selfish for our own reasons but we accept each other’s selfishness. I feel such a prat for what I am doing to her but on the other hand there is no future in our relationship. This disease is hurting me, my love, my friends and acquaintances and my family. It is humiliating me, embarrassing me and makes me feel that I am just something or nothing just blowing in the wind. The most simplest of acts is fast becoming out of reach and I am not about to let someone else do it for me. I consider myself lucky, I have an end game that I can control. But I have two exceptional friends who don’t have the same resources I have. If bigamy wasn’t an issue I marry you both just so you could have the same option. If you wish to judge me please think carefully before doing so.

It's time to do more for the ms community.

Around and about.

Tim's fiancé, Jessica, also enjoys cycling and now joins us when we get out.

Been a while.

Well, it’s been awhile since I’ve updated my blog and I now have to find the motivation to get it up and running again and between my old laptop snuffing it and my new laptop not having the voice program kind of says it all. But that’s all in the past now, new laptop and new voice program and a bucket full of motivation/inspiration and I’m back in business.
So, what has been happening? Basically not much, same stuff different day seems to be the norm. The same forest, the same road through town or the same road down to the lake and I can only write so much about the same trip. The joys of living in a small village where there is not much to do that can dare the edge.
Speaking of daring the edge, I have two ideas formulating at the back of my mind. Firstly, I have this wild idea to travel along the Atlantic Road with a camera crew and maybe raise funds for my project to build an assisted living home for people with ms. If you Google “Atlantic Road” you will understand why. Secondly, I have a most excellent friend, Alida, who is a yachtie and is keen to sale the coasts of Sweden and Norway in a yacht large enough to accommodate me. Forget the fact that water and myself do not get on very well any more or wheelchairs and yachts are not a good equation but it could make for interesting stories.
Blue skies.

Out and about in Ouchy.

ms music video

Natalie.

Vlogging

Okay so I'm trying something different.

Just because...more pictures

Just because.

It’s strange how we adapt to our situations in life and I’ve learnt to do things that are out of reach for me in tandem with someone who can. I still can’t see myself riding a bicycle for two but going skiing or jumping out of a perfectly serviceable plane is entirely different.
A few weeks ago I mentioned to Tim that we should go skydiving, and he said, “If you can find a company that will take you then we’ll go”.
It took me less than five minutes to Google skydiving in Switzerland and top of the list was the name ‘Skydive Switzerland’. I clicked on the link, found the telephone number and started dialling the number immediately before realizing that I was calling Interlaken, which is Swiss-German. French is still not my greatest, but German just doesn't happen. Fortunately, I spoke to Elliot, who just happened to be British and he assured me that a tandem skydive was possible. I handed the number to Tim saying that I would fall in line with his arrangements.
Our main concern was the weather and once the date was set, we kept an eye on the forecasts for the Interlaken area.
Yesterday dawned, and it was very Grey and miserable and by nine o'clock there wasn't much change. But then Tim’s phone rang and the jump master gave the okay for the jump and Tim, Miriam and I piled into the car and headed for Interlaken.
Two hours later, small patches of blue started to show through the Grey and our spirits began to lift. Another 15 minutes and the Sun was streaming through broken clouds, and all the Grey came to life.
We had time to kill and Tim took a turning and off we went going nowhere in particular to see what we could see.





All too soon it was time to turn back and head for the airfield and present ourselves for a serious adrenalin rush. We met up with Elliot and I was introduced to Hans my tandem jumper and…everyone else’s names elude me. Talk about short term memory loss, sorry guys.



Okay, getting dressed up for a parachute jump is not the easiest in a wheelchair but many hands make light work and having some strong guys around didn't go amiss. It wasn't long before I was trussed up like the proverbial chicken heading for the oven, except that I was heading for -15 and not 180 for one hour. I know that duct tape is all-important for repairs and holding things together but as a piece of skydiving equipment?…… I'll say no more.


Getting into the plane was a piece of cake. I was simply manhandled like a sack of potatoes but with care. A push here and a shove there and I was half sitting between Hans’ legs and on his lap. A few minor adjustments and some tightening of my harness and Hans and I were one. A little more duct tape kept my arms secured too my chest, all we had to do now was to wait until we reached 4000 m.
The view over Interlaken was stunning and as we climbed higher, the vista opened up. Pictures will be forthcoming in a few days.






Hans opened the door, the noise and cold air rushed in, goggles steamed up for a few seconds and then cleared. The big picture hits right between the eyes and I see a large expanse of big blue sky. My legs were manoeuvred onto the step outside the door and Hans’ legs were on either side of me. Jeepers, I’ve just put my trust and life in the hands of Hans whom I met just half-an-hour ago.
I heard the words, “Let’s go”, and Hans pushed off from the step……

DARE THE EDGE!!

There’s just an instant that you hang in space and then gravity beckons, grabs hold and then pulls like a herd of wild horses in full flight. The air rushes past like a raging river and there are eddies and whirls that buffet you. We spin left and then right and I try to keep my head up for the camera that I know is right in front of me… “Damn! Left the duct tape on the plane”. The Boy Scout motto is so not funny right now.
The headlong rush ends with suddenness and there’s that same instant of hanging in space and then gravity again calls but with a gentle voice this time. The peace hits you, it’s so quiet, so calm and so nothing and yet, so everything. We spiral a couple of times and the 360 degree view is awesome and I see both lakes and the town of Interlaken.



Hans touched us down on our derrières with the tenderness of a soft kiss on a maiden’s hand, kind of felt but not felt and life recommences back on Terra Firma.




This is one envelope that I’m going to push again but I’m going to have to pay for this one first. I’m thinking 2 days may be 3.

ONE LIFE, LIVE IT!!

Of Dinosaurs and other old things...

I have been battling for the last few weeks to update my blog and it’s not through lack of activity but is more due to the fact that my laptop is tired. T-Rex and my laptop have something in common but if I didn’t know better, I’d say my laptop had something wrong with its immune system and has got multiple something…
It can’t multitask anymore, open more than one window and everything freezes. Speaking to my voice program is like talking to a brick wall, unresponsive and sullen and then we won’t talk about typing. I’m on a one finger mission and I keep miss hitting, miss-spelling and missing the point of the words.
Enough said, watch this space……

At the end of November I will jump, oops sorry, wrong word. I will allow the slipstream to pull me out of a perfectly good airplane a few Kms up above the two lakes of Interlaken.

Room without a view.

I’ve moved from my 2nd floor room down to the ground floor into a studio. It’s a slightly bigger room with the added bonus of a kitchen which includes a fridge. Now I have ice for my whisky and space to keep some beer. Oh, and yes, there’s a bit of space for other essentials…
I also get a small garden which I don’t have to maintain so all I have to do is watch the grass grow. Then there’s the all important fence that one meets a neighbour at for a beer at the end of the day. It just so happens that Tim, the maintenance manager, is my neighbour. The staff here just give a shake of the head, a South African and an American who buck the system and prefer to do things our way.
The down side to moving is losing my window with a view but dangling bare feet on the grass makes up for it as does having a door to the outside.

Weathering the challenge.

The weather lately has been a challenge. Every time I’ve wanted a run outside, Mother Nature has looked on with a glint in her eye and a touch of naughtiness in her hand. I’d be just about ready to go down stairs and there’d be a smattering of rain against the window or I’d just get outside and I’d feel the down draught that precedes the rain or even get a few drops before the downpour. It’s one thing already being out and about and getting caught in the rain and that’s happened on a number of occasions but there’s no way I start out in the rain.
Yesterday was blue skies and it wasn’t too hot and not long after lunch I hit the road and I made my way to a local motorcycle meeting place. Normally on a Saturday, 20 or so bikers meet up for coffee and fun and I get to see some great bikes. Not so yesterday, there were only a couple of bikes and I didn’t even slow down and took the road to San Prex for a lakeside stroll.





An hour or so along the lake was good for the soul but I, accidently-on-purpose, forgot to stay in the shade and I paid for that later. All too soon it was time to head back and as my battery was way below half I didn’t want to leave too late.
An hour later and I was almost back home when Natalie called, “Let’s meet in San Prex for coffee” she said.
‘Too late, you snooze you loose” I said.
But we decided to meet and go for a drink locally. Went up my favourite shortcut but stayed on all 4 wheels, yeah I know, boring. Have to behave sometimes.
Then I checked my battery. On one bar out of ten….
Daring the edge again.

Surreal summer

This is so not funny. The last few weeks have not been pleasant with temperatures in the high 20s. I’ve become a limp noodle with various parts not working and my motivation at a low point. Last Saturday was particularly hot and I watched the clouds building over the Alps in the early evening. At about 8, the storm hit and within a couple of lightening strikes we had a power failure. My first power outage in Switzerland and I’ve been here a little more than a year. I think back to 2007 and Eskom in SA and all the planned power cuts countrywide. Of course I’m prepared here, I have lights with me permanently and it’s a flick of the switch on my armrest.
Sunday dawned and I’d had enough of being inside and hot and limp when I could just as easily be hot and limp outside. I called up Natalie and we arranged to meet at 3.
2.30 arrived and I escaped the confines of the house and drove straight into a brick wall of heat. I very nearly turned round. There was no shade until I turned into Natalie’s road and by then my arms and legs were already burning so trees and bushes along the road were very welcome.
I met up with Natalie and we took off to find some ice-cream. As soon as we turned out of her road the shade became patchy and I started weaving from one side of the road to the other chasing the shade. Then we were in the forest and there was instant coolness.
From down by the lake a tantalizing aroma wafted through the trees, you can’t beat the smell of meat cooking on hot coals. I was tempted to find a way down and go introduce myself but been there, and done that, to no avail and so had to make do with a cup of soft serve from MacDonald’s.

Dare the edge.

I learnt the true meaning of that saying today. There wasn’t much happening and there was no one around or available for a walk or a bike ride so I was ambling around with no particular direction or destination. Went looking for a cold beer but the restaurant was closed and then I spotted a dirt track that looked inviting.
Straight away I encountered a problem and if I’d listened to that nagging killjoy in the back of my mind I would have turned around gone to Buchillon. But no, I’m a big brave cowboy who doesn’t act like a wuss, especially in front of his horse…
There was a fairly large kerb to get over from the road to the track and I attacked it head on. I’d been over a larger kerb and some of the bumps in the forest were way bigger. I committed myself and then found that my perception of depth definitely was not working. As I went over the kerb I found a serious drop and I gritted my teeth as my chair lurched into the void and then came down with a jolt. Then, the back wheels followed suit and I found myself on a bucking bronco and then the front wheels dug in…
We all know the following statement from science class. ‘For each and every action, there is an equal and opposite reaction.’
Need I say more?
I found myself half out of my chair draped over the right armrest with my face up close and personal with the track. My head is lower than my feet and I’m now very stuck with little core muscle to bring me back upright. I try every which way to get back up hoping that no one will see me and then 5 mins later I’m hoping that someone will come past as I’m well and truly stuck. I couldn’t even get to my cell phone…would have been an interesting call for help.
Fortunately a cyclist came past eventually and I called out for some help and was soon back in the drivers seat.
I should have turned round there and then.
Yeah right! I shake the cobwebs away and set off along the track which starts to descend at a steep rate and about a third of the way down was another kerb. I slacken off the power and start to slide sideways.
There was no way I was going to turn around until I reached the bottom and I resigned myself to the fact that I’d either make it down or I’d part company with my chair and have a severely bruised ego amongst other things. Three kerbs later and sliding with little steering control I finished up on a level piece of ground with the track meandering through some trees. So, being of inquisitive nature I followed the track and eventually came out next to a river. I followed the river for a bit and came to a clearing where I could sit and ponder on life’s many mysteries including how the heck I was going to get back up the hill without mishap.
All too soon it was time to make tracks and I began to doodle my way along the track to the start of the incline. Now I have to start playing with my centre of gravity and put more weight on the front but not too much as to loose traction on the rear wheels. Had to play around as I found myself going backwards a couple of times with wheels spinning. Not such a nice feeling. The three kerbs were not fun, I had this feeling of toppling over backwards and I had the urge to stop the bus and get off. But I resisted the urge and kept the chair moving, bucking and throwing up stones right to the top. At the top, I negotiated the first kerb with more finesse and went on my merry way without a care in the world.
Dare the edge. Easy huh?

On the road again.

Sat 22 May
After more than two weeks of inclement weather, blue skies are welcome back with open arms. I arranged to meet up with Deb in the afternoon so that we could go for a walk.
It is strange how the simplest things in life can give a great amount of pleasure. I’m normally out and about on my own or with Miriam or Natalie on their bicycles and chatting as we go isn’t really an option, riding abreast is not ideal.
Deb arrived with puppy in tow and we set off for our walk and pretty soon we were off the beaten track. Deb was walking next to me chatting as we went, her hand resting on the arm of my chair. Just that conversation whilst walking made my day and we walked like that for a couple of kilometres.
Eventually we arrived at a newly refurbished restaurant on the edge of the forest. The sound of a bottle of beer opening was calling… And then I tried to enter. Swiss efficiency seemed to have slipped up somewhat. The complete interior had been refurbished and made wheelchair friendly. The only problem was that I couldn’t get into the restaurant because of a set of steps. Someone had a blonde moment here.
It wasn’t a problem as a chair was brought outside for Deb and I always have my own chair with me. In a few moments we were enjoying an ice cold beer in the sun whilst the owner and a couple of patrons were discussing ramps and a wheelchair entrance. I’ll give it a week and then go back and see if I can get in.

Sun 23 May
Another fantastic day, bright blue skies and clear air. I met up with Natalie after lunch and we decided to go somewhere different.
So, it was off to Rolle a few kilometres away and of course, with Natalie around, a main road is something I have to put up with. Hey! I even went through my first police road block… I remember I used to be in those too in a past life.
We didn’t get to Rolle, it was too hot and the sun was burning and so we stopped at a place called Perroy and found a waterside café with a bit of shade. A long cool glass of lemonade was perfect.
All too soon it was time to head back and being late afternoon the road was even busier. Time to dare the edge.
An hour later I was back in Buchillon seeing Natalie to her door. Another 15 mins I was back at home and then the 2 days caught up with me. Fatigue washed over me and I had to take things very slowly. Also, after 2 days in the sun I had my first tan in years.
Overdosing on Vitamin D!!

Natalie, always ready for a bike ride.


Mon 24 May.
There is nothing like a sucker for punishment. Great day again. Had a good night’s sleep and I was raring to go. After lunch I took a slow ride to nowhere, went through the shady forest and took a few pictures.
Was back home for supper and then took off again and went to McDonald’s for a Sprite. Kinda wandered back home after 9 with the sun in my eyes. Note to self…take sun glasses with in the evening….