Mortality

[quadbliss]

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]

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]

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

[cartman]

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 dx 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]

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]

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]

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]

Very good post Quadbliss!
Cheers

[Al]

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]

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]

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]

cindy

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

cartman

[quadbliss]

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]

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]

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

[quadbliss]

Liz,

You are right about that, and I am grateful for every moment. I am also grateful for the opportunity ALS has given me to view the world from a different perspective. Although travelling is a good way to expand your mind, there are other ways that don't require leaving the house or spending any money.

Mike

[janf]

I Love You All. Thanks For Positive Words, We All Need It, And Each Other. It's Amazing ,how God Brought Us Together. He Certainly Knows His Stuff.. Mostly He Just Knows The Children He Created... Thanks To You All Jan

[lunarruna]

Greetings,
I was thinking of ways to describe the high highs amid the low lows of those dealing with ALS, and then the other night on 'King of the Hill', there it was .....(hope you all watch 'King of the Hill' a cartoon, yes, but a font of wisdom pearls you might never expect :) ) A buddhist parable:

A tiger chases a man over a cliff, he catches a branch half way down and is hanging there, he looks down, and there is another tiger waiting at the bottom of the cliff---his death is certain. Then he looks across the branch on which he is hanging and sees a strawberry. He plucks the strawberry and eats it----it is the most wonderful strawberry he has ever tasted.


Cheers -- Happy Holidays, Beth (CALS to Shannon, dxed 8/04 at age 40)

[Al]

One of my favourite shows. Hank does show up with pearls of wisdom sometimes. AL.

[lauraja]

Hello to you all.
why speak of death so soon? Why not fight to the bitter end??? My father was diagnosed with ALS in 1982 and has been under life support machine since 1989 which has given him so far 17 years more than expected (he should have died in 1989). Thanks to technology, he has seen me grow up into the 28 year old woman I am today and has seen my daughter who is now 3 years old. He can never hold her or kiss her but he loves her for sure and she even lies on him sometimes...
Of course, he has fought and has been lying in a bed for the last 18 years but that is his choice and he is the strongest man I know. Of course it has not been an easy ride and often he has had lung infections and had to be placed under antibiotics but for now, he has always pulled through. He is 56 now and was just 31 when this terrible illness hit him but somehow I can say one thing : thanks to him and his advice I was able to leave my quite violent husband and face up to life as a single mother. His advice gave me the strength to do this. Thanks to him I am also more sensitive than the average person. Of course seeing my father slowly grow tired (these last few months he seems far more tired) hurts me a lot but then I know that we love each other so much and that his illness has made me so close to him...we have developed a special bond over the years.
Please continue living for as long as possible as your children should get to know your personnality rather than grow up thinking 'my father died when I was 6 of this dreadful illness'............................. Give them the chance to know you.

[quadbliss]

Excellent perspective from a family member. PALS who decide against life extending measures so they won't burden their families, should consider these sentiments carefully. Thank you Laura.

Mike

[CindyM]

My thoughts tonight are turning more to the big question of mortality. I just came back from the nursing home where my Mom is in her final stages of Alzheimer’s. Yesterday at our family holiday party I urged my sisters to go see her while they can, but I don’t have confidence that they will.

She was not the best Mom. She will leave her children, all 4 of us, with a multitude of feelings. But even though she was angriest with me-according to what she told my siblings- some instinct inside me made me visit almost daily, and tonight, looking into her dim eyes, I see what I did for us both.

A lot changed from these visits. It is the only chance I have been given to make my peace with her. I had to find a way to do this without communicating with her, but I found I was happy to meet and learn about the person as she now is. I believe that is what helped me forgive her. So, we sit in tranquility and share a smile when she is strong enough.

Her demons were too much for both her and the rest of us. She may not be able to go with peace. But I am learning how to live my life and face the future with grace (OK: mental, not physical grace :-D ) and courage. In the end, I cannot change what life gives me; I can only change my reaction to it.

Happy New Year to us all. Love, Cindy

[trustinggod]

Cindy,

Thank you for giving the best example of learning to live a fulll life inspite of what has happened in our past.

You made a choice to forgive and to "honor your mother" not for what she did but for who she is. I believe by choosing to do this you have allowed yourself to be all that God created you to be and to be fully capable of giving and receiving love for the rest of your life. Too many time we allow the past hurts and unjust treatment we've experienced to shape us in ways that make us hard and unloving. The only person we hurt when we refuse to forgive and continue to do what is right - is us. I certainly wish I would have learned this long before I did.

Best wishes for the new year to you and yours.
God Bless you.
Jeanne

[CindyM]

Thanks Jeanne. I am not a religious person but it feels like a religious experience. Certainly there is some sort fo spirituality going on. I feel at peace both with what is hapening to her and what may be happening to me, awaiting a DX for what increasingly looks and acts like ALS.

Have a good day, however you chose to spend this first day of 2007!

[quadbliss]

Hi Cindy,

I recently lost a stepfather who had hurt several family members, including myself. In the last few years, I began to see that he was actually a very tortured soul, and had lived a difficult life. This together with the life lessons I learned from having ALS, prompted me to reach out and thank him for the positive things he had contributed to my life. I noticed that after his death, I was at peace, while my brothers and sisters had unresolved issues.

You will benefit from reaching out to your mother, while unfortunately, your siblings will probably have unresolved feelings for the rest of their lives. Only light can end darkness. Your life will have much less suffering because of this elusive truth you have discovered. I believe ALS can actually enrich your life if you are sensitive to the lessons it is trying to teach you.

Mike

[cartman]

i believe i am at peace with this disease and my choices. i admire each of you who have searched and found answers. my wife, my 3 children,8 grandchildren, brother, sisters, and many friends have given me care and love. my decisions not to use technology to prolong my life is personal and feels final. i do admire those who have made other choices and their caregivers who have given so much. a happy new year to all.

cartman

[quadbliss]

Cartman,

To be at peace with our decisions in life as we face death is more than most people accomplish. ALS gives us the opportunity to contemplate and "bring right" the inevitable blunders we have made during our existence on this planet. Many people never get this opportunity. I respect your decision.

Mike

[CindyM]

Eloquently put, Mike and Cartman. I've been wondering why ALS, more than most diseases, seems to allow folks to live life to the fullest while preparing for death. I suppose it has something to do with the fact that there is no cure. We cannot focus on treatment that may make us well, so we must figure out how to live while dying. Or perhaps because we are not always preoccupied with pain?

At any rate, some of the most courageous, warm, and delightful people I know are on this forum. I am proud to meet you all.

Cindy

[quadbliss]

Cindy,

I think that ALS just illuminates a feature of existence that we all must face eventually, mortality. We are lucky enough to see the beauty and precious nature of this life while we still have time to be present. One just has to be open to the experience.

Mike

[Wheelchairdriver]

When I was diagnosed we cried for about ahalf hour.than prayed and everything was lifted off us. Sincethen we took trips to Alaska and Hawaii ,to Oskosh , Wis. for the big airshow which we hadnot attended for about 4 years. Was still able to ride snowmobile 300 miles in the "Never surrender" snomobile tour benifiting the MN. ALS chapter. This feb. I will be going on the same ride in a specially built sled that was built by Polaris engineers for one of their own that had ALS 4 years ago. Life is'nt done til its done!

[Beebe]

All I can say to your post Life isn't done till it's done is AMEN!! My best to you, Beebe

[sufernan]

ALS has changed my life in two ways: it made me at widow at age 36 with a small son and it tought me how to love. I believe God is love and to love is the most important thing we can do with our lives.
You have open my heart a little more with your postings - thank you for teaching me how to live! I think I have learned the most important lessons in my life from people with ALS.
Sunny

[quadbliss]

Hi Sunny,

The human experience is similar to river rafting. You can use your paddles and try to avoid the big objects, but don't fool yourself, the river is in control. You can't go backwards, or change its course. You must take what the river gives you and do your best to handle it gracefully, all the while, enjoying the ride.:-D

Mike

[Al]

I went to the funeral parlor today to see a man I met last summer. He was diagnosed with ALS in Dec. of 2005. He passed away on Tues. We kept promising to get together again but he was involved in his things and me with mine. My wife talked with his wife but we just never got around to getting together. He had limb onset and is gone in a year. Very fast and unexpected. A blunt reminder to me to not put off things until tomorrow. Tomorrow may not come. AL.

[CindyM]

Al- good reminder. We all need to remember this and it doesn't hurt to be reminded from time to time.

Wheelchair driver: welcome to the forum. Did I read it right that this is your first post? You are my new role model! I don't even have a firm DX yet and usually am too tired to get off the sofa, but here you are scooting around on snow mobiles!

[Wheelchairdriver]

I was diagnosed Feb. 05 with leg onset ALS .The first spring I started my last woodworking project and built my own casket. My wife thouhgt I was crazy but said it turned out beautiful ,Buy the time Iwas done with I was ready for my Wheelchair.

[Al]

Just when I thought I'd heard everything. Quite innovative Wheelchairdriver. I know quite a few guys that do woodworking but have never seen them do a projet that would be that useful in the end so to speak. Good one!! AL.

[CindyM]

Now that's my kind of attitude! Got yourself a hobby that will also prove useful!

BTW, today (again) my tongue feel furry and thick. I thought I was talking funny and asked Lee if I sounded so to him. He said he couldn't hear it. I replied that my tongue felt thick. He said, "It has to be from overuse. It got that way because you talk so much. Just like when you used to go to the gym, Cindy. You exercise a muscle it gets thicker. Try talking less."

That's my guy!:-D