Excessive hope

[Tedstehr]

I simply cannot get too upset about my ALS. Could this be a mental problem?

1) People die everyday from hurricanes, accidents and horrible cancers. I am alive today, and I may be alive ten years from now.

2) None of my family have suffered from bad health, mental illness or accidents. I can't imagine how I could live with them suffering those afflictions.

3) My progressions seems slow, but I know things will get worse. Eventually it will get really $h1tty. But not today, and maybe not for many years.

4) Even with incremental advancements, ALS may become like AIDS, something you just live with. And maybe in my lifetime.

5) People die of painful cancers, sometimes after painful surgeries, chemo and radiation that doesn't work. For the most part, ALS is not a painful disease.

6) My family gets along better now than we ever have. We tell each other we love them almost every day. And we are all more patient and understanding. This gift was packaged with my ALS diagnosis.

7) I discovered how caring and empathetic my friends and family are. One work colleague simply made a donation to the ALS Foundation in my name. Another just came over and did some Autumn gardening, My sister-in-law brought over dinners twice that lasted several days. And I heard my wife's somewhat gruff uncle teared up when he heard I had ALS.

8) I am living as a better person. I wish I had done this spontaneously, but I didn't until this. Oh well, at least I am here now.

9) I treat and love my wife the way I should have for the last 25 years, But pride, impatience and lack of empathy got in the way. That won't happen again.

10) I now have a great excuse for everything I don't want to do. My wife asked me to go to "Bard on the Beach" to see "As You Like It." Although I was in a few of his plays as a young adult I didn't feel like going so I just said my ALS was acting up. Kind of like a get out of jail free.

I hope this is not insensitive to PALS on the site who are further along in their progression, I did not mean it to be and I think about how hard that must be. Because the last positive thing I'll cite is I am now part of a small group of people who care for each other and truly hope life will offer small triumphs and joys to each other to make living with ALS less difficult.

 

[affected]

I did not find it the least bit insensitive.

None of us know what tomorrow will bring, not even PALS.

Run with every bit of hope and joy and love you have while you have it. That is not meant in a non-hopeful way, everyone should live this. Thanks for sharing!

When you are further down the progression line, and when things are tough, do you think you will wish you hadn't had this time of feeling so many wonderful things? NOPE

My Chris said to me long before ALS (his first wife died of cancer at only 41) - when you are on your death bed the only things that are of value are your memories of happiness. THAT's something to hope for!

 

[Narrowminded]

Ted - I think a positive attitude can be nothing but good. Nope from a CALS perspective not the least bit insensitive. I think that my husband Brian would agree with most of that, not that he practices all of it.

Anything you can do to leave happy memories with those eventually left behind will be huge for them and when that times comes, you will know you lived a life well lived.

I, for one, would like to thank you and congratulate you for finding the silver lining. Thank you.

Hugs,

Sue

 

[Firefighter58]

Ted I agree one hundred percent. it is good to see a post that is not full of sadness a " woe is me "
Al

 

[Lkaibel]

I want some of your attitude! You go

 

[KarenNWendyn]

Ted,
Your words are inspiring. It's always a good thing to try to look for the silver lining in any situation. Like you, I'm realign there is more love and hope in this world than I previously thought possible.

 

[KimT]

Ted,

I hope to "catch" your attitude. Your post was wonderful and it made me cry in a good way.

 

[Manhattanite]

I wish my PALS had had your attitude, but if there is something I have learned in my 2+ years on this forum is that every individual reacts differently to the disease, just as the disease affects every individual differently. My PALS was angry, he felt his future had been stolen from him (whereas I realized that such a future was never for him to have, so nothing was "stolen"). I often wonder if a more positive attitude would have resulted in slower progression, probably yes. So I don't think your post is insensitive at all. It makes me happy that your attitude will help your CALS a lot as well.

 

[Tedstehr]

Ted,

I hope to "catch" your attitude. Your post was wonderful and it made me cry in a good way.

I am glad it was in a good way Kim.

 

[Tedstehr]

I wish my PALS had had your attitude, but if there is something I have learned in my 2+ years on this forum is that every individual reacts differently to the disease, just as the disease affects every individual differently. My PALS was angry, he felt his future had been stolen from him (whereas I realized that such a future was never for him to have, so nothing was "stolen"). I often wonder if a more positive attitude would have resulted in slower progression, probably yes. So I don't think your post is insensitive at all. It makes me happy that your attitude will help your CALS a lot as well.

I am sorry to hear that Manhattanite. I am sure it was difficult enough for you without dealing with your PALS's feeling of loss. The fact that you stay on this site and offer help to others speaks volumes about your caring and thoughtful nature. Thanks from me and everyone else you share your knowledge and experience with.

 

[chally]

Attitude of gratitude! Good on ya Ted.

 

[andirai]

Ted,

I too was diagnosed in August and everyone tells me how well I am doing. They say "You still sound like yourself" to which I reply "Who else would I sound like?" I go through times were I feel positive and then go back to gloom and doom. It is quite the elevator ride of emotions. I love your attitude and hope to get back to feeling happy and hopeful again soon.

 

[TomSanti]

I have to agree with all of the positive responses you have received. In my opinion attitude is everything, and in our case quite possibly could add years to our lives.

Good for you sir,

Good luck and God bless,

Tom

 

[Tedstehr]

Ted,

I too was diagnosed in August and everyone tells me how well I am doing. They say "You still sound like yourself" to which I reply "Who else would I sound like?" I go through times were I feel positive and then go back to gloom and doom. It is quite the elevator ride of emotions. I love your attitude and hope to get back to feeling happy and hopeful again soon.

Andirai, I would be liar to say I don't have times of doom and gloom too. I can't imagine anyone not being down sometimes with this diagnosis. Last week I traveled to Green Bay, WI through Chicago Airport. I tried to do things that abled people do and it was hard and I got tired walking across that godforsaken football field of an airport. But then, I put my big boy pants on and said "I am going to take that cart from now on and be proud of it!" My positive attitude is what I use to pick myself up off the floor. Literally as well as figuratively.

And I also realize that it is harder for PALS on this site who have lost so much more voluntary movement than me. I am sure I will have a harder time being positive as I lose more of what I take for granted. But I am still going to look at my friends and family and think how lucky I was to walk the earth with these wonderful people.

And then I'll ask my wife to make me a sandwich!

 

[Ed340hp]

Excess hope is never excessive.

It's hard to communicate that the loss of the capability to do little things are often the benchmarks that sting the most, and when adaptation instills that needed sliver of hope with continued independence.

Every day is an opportunity to find a victory within the growing challenge.