Now that we have internet once again....we are back.....Joan and I started this blog as a way to keep family and friends up to date on how things were going so we wouldn't have to individually contact people each time there were changes. If they had questions they could initiate contact with us. This left it up to who ever wanted to know anything they could read our blog for themselves. We determined from the start to be as vulnerable and transparent as we could be in sharing our perspectives, our victories, our defeats, our fears, our hurts and our triumphs. After all....it is our story. There have been a couple of unexpected rewards for us. We have made friends with people all over the world. And have also found that blogging helps in confronting and dealing with the life issues, good and bad, that we have had to face fighting ALS.
What it boils down to especially now is I am face to face with death in the near future. As I shared in the previous blog I am an incurable optimist but also a realist. Outside of a miracle given the rate of decline of my breathing ability death knocks at my door. I am fighting the good fight and I am certainly not given up but would be a fool to deny what lies ahead. I have found that it takes a lot of intellectual and emotional fearlessness to confront these things head on when you are actually in this situation. Taking into consideration that any one of us could not be here tomorrow it is just in my situation it is obvious in the way my vitals are declining that it is no longer theory but very practical and real.
ALS affects every body so differently. In my case, I am so thankful that I have not lost my ability to speak. In saying that, there have been tonal changes and I am dealing with hoarseness and stubborn flem in the mornings that I have a hard time clearing to be able to speak. My actual ability to form words has not yet been affected. What does happen though as my lungs have become weak we have noticed this last while that I don't have the air to force out in order to create sounds. I actually speak more loudly with the bipap on as it forces air into my lungs so I have something to speak with. I have noticed that after a while I actually start to talk in a loud whisper. I know this is the beginning of my voice no longer being able to project audibly.
No one knows the future but given the rate of decline of my breathing and the degree of speech capability that I now only have I still hope to be able to speak even though in just a whisper to the end of this journey. That is a tremendous blessing and as many with ALS can attest to!
Having lost a couple of friends recently that we got to know through the ALS Society it has prompted me to finish up some of the details concerning my passing. Joan and I went ahead and got our memorial stone picked out and placed at the Sperling Cemetery quite some time ago. That in itself was an emotional feat! Some of these kinds of things are a whole lot easier to do when your demise is way down the road then it is when you know that you have limited time. It takes an incredible amount of emotional reserve to take care of these things.
I am determined to take charge of these areas so that Joan is not left to deal with them on her own at the point of being at the peak of grieving. I was honoured to have been given a hand crafted burial urn for my ashes from a dear friend of my Uncle Keith. I love it! but have to admit it is quite a mind warp and an emotional experience laying immobile in my hospital bed looking across the room at it and thinking hmmmmmm my earthly remains are going to be in there soon. Very weird! After awhile of having coming to terms with it we now have it safely packed away until needed.
I am looking after some of the other details as far as choosing a funeral home and deciding on things like whether to have a viewing first or not, details of a memorial service, writing my obituary, choice of songs and several other details. I am in the process of thinking about having a traditional funeral or even not having a funeral at all.
With all of this it stirs emotions deep deep into my being. I guess this is all part of the grieving process and dealing with the transition of my passing from this life to the next and letting go. I know that I am going to go to heaven but I just don't want to go anytime soon! For me, each day means so much as I see the sand in the hour glass running out! I believe eternity awaits all of us but I am determined to squeeze the best out of every day that I have left for I will not walk on this earth again as I now know it. Hey come to think of it....I can't walk on it now! :)
Before you write me off as just being morbid you have to realize that I would bet nearly 100% of people with a terminal illness that have the luxury of having a rough idea of their time left go through the process I have described. I have simply found it easier to embrace the reality of my situation rather than avoid it. Another example of things people think about but rarely speak about is the whole issue of suicide when facing a terminal illness with no hope of a cure and every certainty of hellish suffering.
In the early stages of the illness I dealt with those choices as well. I have known of some ALS sufferers who did chose to end it all earlier. I do not judge them and believe it actually takes great courage to make that choice. It is just that for me that was not an option. I wanted to squeeze the best that I could out of every minute that I have. The irony of this illness is that when you have the ability to end it yourself you still have enough quality of life left to want to hang in there. By the time the quality of life is gone you are no longer able to pull the plug. To me it is important to go down these different paths in my thinking and not to be afraid of speaking about them and letting people understand your decisions and choices.
"Even though I walk through the valley of the shadow of death I will fear no evil for YOU are with me!"
