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.

4 comments:

  1. Well said my friend.. and under the same circumstances I would certainly make the same choices. I get you and am and always will be yr friend.. just pre-warn me ok because there are always things to be said xx

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  2. Love you Uncle Shawn!!!! For selfish reasons, I became so so sad to read this.... But i can only imagine the pain you are enduring. Praying for you always, ALWAYS! Please remember, you have touched so many lives, especially mine xxx love you always, lizard legs! Xxxx

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  3. Shawn buddy, You and I have gone back a long way but this has come as a shock to me however I can understand the pain and suffering you are going through as I have family members and friends with MS. For you to even think about the choice that you are considering I really cannot conceive your level of pain and suffering you are enduring. I trust that you have committed your life to God as he will give you the strength to endure and guide you in your decisions. As my "Lizard Legs" has said "You have touched so many lives" over the years and although there are many miles between us you and I have always remained friends and I will respect whatever decision you make.
    Remember my friend a prayer can always help although it might not seem to be answered in the way you wish it, You are in all our thoughts and prayers, Mike

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  4. Hi Shawn,

    My name is Min Jae Kim, and I am interested in starting a charity to fund tandem/AFF jumps for UC Berkeley students enrolled in the DSP (Disabled Students Program).

    I was wondering if I could have permission to use some of your photos on this blog. Please let me know if you would like more information on this matter.

    Thanks in advance for your consideration in this matter.

    Sincerely,
    Min Jae

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