Thursday, August 16, 2012

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I have withdrawn into myself and I’m sorry to say am ignoring friends and family as I don’t want to burden them with my problems or my daily grind.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




Sunday, May 27, 2012

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.

Sunday, May 20, 2012

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 apr├Ęs.

Sunday, May 13, 2012

http://youtu.be/3CZTFsXFMgM

Monday, April 30, 2012

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.