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quadbliss

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PALS
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Benicia
Even the word death makes some people uncomfortable, but I have always accepted it as a very natural part of every life on this planet… until it came knocking on my door. When I was first diagnosed with ALS, death looked me square in the eye, and it was terrifying. When I finally learned to calmly accept it, death became my companion and has been ever since. This may sound morbid, but it is actually the main component to my passion for life. We are all mortal. Any one of us could die before we lay our head on the pillow tonight. I have been lucky enough to receive the opportunity to really comprehend this information, and the time to use it.

I feel the fleeting nature of life, and this allows me to fully enjoy everything around me and every experience. My disease has limited the activities I can participate in, but it seems worth it. The many things I can still experience and learn about, are so much more fulfilling and meaningful. I seem to have the perspective to understand my position in the universe, and from this position I look out in awe.

There is also the ability to live fully in the present. This means allowing myself to explore depths of emotion that I had suppressed in the past. I would have been afraid to go there. Having unlocked those gates, I realize that I was missing a crucial connection to humanity; true empathy. To feel the joy and pain of others is to break down the walls of arrogance, prejudice, and ignorance that have led to man’s ugliest moments. Allowing these emotions to flow, feels natural and somehow cleansing. I feel more alive.

For me, death has been an invaluable teacher who has shown me the secrets of true happiness. I don’t know if I would have ever really understood these concepts had I not been forced to view my own mortality.
 

Pearl

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I appreciate your thoughts and words used to express them.

I am not an ALS patient, but my best friend's husband is and all I can add is that it has been remarkable to see the barriers come down, all the garbage and baggage disgarded - all that "just isn't important anymore" is gone- mostly from their lives, but to some extent, in mine as well. Daily living has been put in perspective and it certainly is a different view from where the majority of Americans sit on a day to day basis. The new perspective is refreshing, freeing and welcomed. Nevertheless, such a shame that such a tragedy had to bring us here.

When this diagnoisis was fresh, my friend asked, "what then IS important?" My response, "people". People are important. Family, friends, strangers -the feelings of others, the loneliness of others, or heart felt interactions, our compassion.

An aquaintance of mine died this week. I did not know her well - she was only 44 and died after a brief illness leaving two preteens. The one thing I remember about her was the day that I missed my child in a holiday play because of business. I couldn't help it, there was nothing I could do to get there on time - it was unavoidable, but my 4 year old was crushed because I wasn't there to see her be "Mary" in the preschool play. When I arrived late, my daughter was sitting in this woman's lap, crying, and this sweet lady was comforting her. We only knew each other vaguely, but I will never forget her act of compassion for my child.
 

quadbliss

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Isn't it interesting that it often takes a devastating blow to make us see the truly important things in life.
 

cartman

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the death of 2 brothers in my pre-teen years, the korean war as a teenager, a career in law enforcement and the death of close friends placed death at my door many times. presenting flags to the widows and mothers of death's victims, being there for family members made death an unwelcome companion of my life. i suspect it is the same with most people who have dealt with it's aftermath. this year i was diagnosed with als and faced my own mortality. i am in what the dr's say is latter stages. i quickly realized how much more difficult is is for those who love us to face death's reality then we who are terminal. I never feared death in war or law enforcement and i have no fear of it now. i do not welcome death, but i will not try to hold it off with any technology that would give me a few more months. als is a mean nasty punishing disease that can cause one at times to want to hurry and assist in the outcome. when we realize how difficult that would be on our caregivers we take that option off the table. the realization of my death has given me no great moments of insight, but has made me slow my thought processes down so that each day can be enjoyed with a bit more fullness. when i tell my wife i love her i realize how true and sweet the words are. when i think about my past life i would live it all the same. as an investigator i had to always examine myself to arrive at the truth about others. my life was never hidden form me or my loved ones.

cartman
 

quadbliss

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US
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California
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Benicia
What can I say? We all confront this disease in different ways, none more valid than the others. The important thing is to be at peace with your decisions.

Reality is not solid. The world is unique to each of us in the way we perceive and respond to it.
 

quadbliss

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OK, I have been thinking about this all day, and I just can't let this thread hang on a negative note. My last several years have been focused on helping other PALS see that ALS doesn't have to be such a dismal experience. My intent is not to sound contrary, but there are a few points I feel compelled to share.

My acceptance of life extending technology has given me five extra years (so far). During those years I have journeyed across Australia; taken a trip through the Panama Canal; cruised down a narrow fjord to experience a calving glacier up close; developed a new passion (digital painting) to replace my old one (cooking); watched my daughter grow into a beautiful, well grounded young woman (I will soon be a grandfather); and embarked on an inward journey that is bringing even more richness to my life. I am happier now than at any other point in my 42 years.

I realize my experience is atypical, and that there are factors outside the ALS that affect one's quality of life, but you can continue to thrive. Circumstances don't determine your ability to enjoy life, your responses to them do. The choice is yours.
 

CindyM

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My son, who is 24, sat me down for a serious talk. He is concerned that I am too accepting of my fate. He feels like I should keep a positive outlook, like they urge cancer patients. He thinks that the cancer patients with a positive outlook tend to have a better chance at survival.

I do not feel negative. But I do believe I don't have a chance to be cured. However, I feel at peace. Part of that peace comes from facing my worst fears and knowing that there are some things that we cannot change and thus must accept or else we will be eaten up with feelings of horrible anger, resentment, and the rest.

The things that once seemed earth-shattering are for the most part un-important. What matters is people. And when I focus on this priority I feel happy.

I want to tell everyone now that this fourm, by offering me the chance to learn and understand, contributes hugely to my sense of peace. I cannot face my fears without knowledge, and this is a place where expereienced people discuss every aspect of this disease. So, because of your willingness to share, and because of your acceptance of both ALS and those who respond to it in our many varied ways, because of this I can find the information I need to be calm and courageous.

Thank you all! Love, Cindy
 

Mike27

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Alberta
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Very good post Quadbliss!
Cheers
 

Al

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Joined
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PALS
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On
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Hi Cindy. Even though I try to keep an upbeat positive attitude, I am a realist. I know I'm screwed but do not chose to let it consume me or my life. I really hope I'm wrong and they do find a cure but am willing to accept my fate. I don't like it but we all are going to go, sooner or later. We with ALS can plan on it being sooner. How you face that is a personal choice. I choose to try to live every day like it could be my last. I hope it's not but if it is at least I was happy for today. AL.
 

Al

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This is something I keep above my computer. AL

This can be a good day or bad day-my choice.
I can be happy or sad-my choice.
I can complain or I can cope-my choice.
Life can be a chore or a challenge-my choice.
I can take from life or give to life-my choice
If all things are possible,
How I deal with those possibilities is-my choice.
author unknown.
 

trustinggod

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Al,
Great message to remind each of us, PALS or not, that we are actually as happy as we make up our minds to be. I think in our culture (Western world) we are taught that happiness is a right and that we deserve to be happy and that happiness equals no pain, inconveniences, hardship, financial stress, disease, etc.

I have a daughter (missionary) who has lived in Ethopia for extended periods of time.
She has said that the people of Ethopia are some of the most joyful, giving people she has met. In case you are not aware, the average life expectancy of these people is around 39 years and most do not enjoy three meals a day. They live in make shift huts with dirt floors and have no access to medical care (or very little, one doctor per 20,000).
Most Ethopians face each day hungry and poor but my daughter has experienced these same people offering to share the last of their coffee beans or popcorn with total strangers. They are thankful for the rain when it comes or the sun if it shines and never expect that their life will be easier tomorrow.

So If you don't mind, I think I'll copy your little saying you have above your computer and look at it each day to remind me that I can choose how I feel.

Thanks for sharing.
Jeanne
 

cartman

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Messages
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PALS
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mo
City
nixa
cindy

you got it just right----it really is just people

cartman
 

quadbliss

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Dec 12, 2006
Messages
392
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PALS
Diagnosis
07/1998
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US
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California
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Benicia
Jeanne,

I wanted to share something I wrote a while back that seems to speak to what you wrote.

I am not able to enjoy as many "pleasurable" experiences as I once could, yet I feel happier than ever. In searching for answers to this apparent paradox, I discovered the following:


In our culture it is easy to confuse pleasure with happiness. Pleasure is derived from things like a fine meal, live theatre, a vacation, or a new car. The advertising industry, in fact our entire economy, is devoted to stoking our desire for new pleasures. While these things are enjoyable, and should be enjoyed, they are not the same as happiness. If we are not truly happy and we look to sensual pleasures for fulfillment, we will never find that spiritual completeness for which every human naturally longs. The desire for physical objects or external experiences will never be extinguished. When we finally acquire something we have been striving for, we will experience a temporary satisfaction, but we will soon want something more.

True, lasting happiness comes from perceiving and reacting to our world from a positive perspective, disassociating from our egos, feeling gratitude for everything in our lives, and cultivating tolerance and compassion for others. Only then can we experience total peace and joy within ourselves.
 

Barbie4

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Mar 26, 2006
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139
Country
CA
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Ontario
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Everett
Great Thoughts everyone

Thank you for sharing your thoughts everyone.

This was a very thoughtful thread to read through. Attitude is everything, and keeping a positive attitude is sometimes challenging through ALS, but I appreciate knowing how you all find different ways to do it.

thanks Barbie
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
Quadbliss -

In the years since you started with your life extending technology, you've had more pleasurable, enriching experiences through your travels than many people will ever be able to afford even if they are in good health. You are very fortunate, indeed! :-D

Liz
 
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