Pssst....Pass it on

[LornaDoone]

I just found out a dear friend, Sharise, has passed away from this dreaded disease. I wanted to share a little story about how we met. You will get the title of this thread by the end of the story. I was so sad about this and was going through this site trying to seek some comfort. And another thread on here about an unsupportive support group got me thinking of this story with my dear friend.

If you have a story of how you've been able to help another or someone has been a big help to you, please also share.

Let's pass it on....


My story about Sharise:

I started going to a support group and it was a real downer. A mixture of PALS and their loved ones. The PALS there felt useless, like they had nothing to contribute anymore. I found myself feeling really down when I left the meetings. I needed support. I am giving of myself so much and do not want to have to deal with all this depression.

However, once I decided to give the group a better chance, it was AMAZING. A dear woman named Sharise and I struck up a friendship. She was feeling the same way as I was and wasn't sure she was going to stay with the group. We both were trying super hard to keep the Living with ALS mentality instead of dying from it. The focus of this group seemed to be how to make the best of things when you are dying. You WILL have this happen to you so prepare for it now. While this is good info, the presentation was horrible. Screw that!

Sharise stood up one day with something on her mind. She said that the group focus was backwards. She mentioned how much people with ALS have to offer, how much the elderly have to offer, etc.. Simply because someone is closer to the end of their time on earth than the general population, does not mean that they are doomed. There are so many little things that PALS can do that will make life easier on them and their loved ones. Yes, there are the depressing, ugly realities of the disease, however, there are many beautiful parts of life still left to live.

I am very thankful that Sharise decided to tough out the group. Without her, I am not sure I would be so well adjusted with all this crap that has been dealt my family.

Sharise passed away after living 4 years with ALS. Such a blessing she is in my life. My hope is to be a blessing to others. Now it's my turn to pass it on.......

 

[abbas child]

Lorna, thank you. It's wonderful that your friend, Sharise, was able to make lemonade and knew that as long as we're alive, there is a purpose. And, I'm sending you much sympathy as you grieve your loss.

I've never been to or wanted to go to a support group. However, I began reading posts here (in a limited way, as I was extremely techno-disabled) and in another group...where I met Corinne and Gary. They still had an upbeat, joyful life and a great marriage although Gary was her caregiver. She has just died a couple of weeks ago, or less. Corinne delighted in each day the Lord kept her on earth. Gary has always said she never complained and was an easy person to care for because she was cheerful. As I "watched" the two of them, which later was really only Gary as her disease progressed, I was determined to use her as an example. The joy in each day, the cheerfulness, the faith (well, the faith was already in place...but I needed a kick in the backside to jerk my emotions) became my own by practice. I want to finish this without ever becoming lost in misery or self pity. Corinne did.

 

[AKjo]

Lorna, I am sorry for the loss of your friend. You will miss her, but the legacy she leaves behind with you is already blessing others. The "CAREGIVER ROLL CALL: How's everybody doing?" thread you started is just a small example of how you are passing on her model.

Ann, whatever you are doing to maintain your cheerfulness, faith, and compassion for others is certainly working - you inspired me to want to be a better person. I want to be able to care for Gary in such a way to prevent him from becoming lost. I haven't heard it be phrased that way before, but it makes sense to me.

Both of your stories touched my heart tonight.

 

[Ladyinn]

What a great site!

Ann, you have set the bar for me with your compassion and humor no matter the problem or challenge! You have inspired me to find peace even when I feel there is no purpose - and you have been a true friend in some very difficult times.

When I grow up, I want to be just as helpful to others! I mean, if I get stuck in the refrigerator, I just hope I can laugh and make others laugh instead of crying!

Love you friend,

Diane

 

[Lavender Lady]

Ann, you are an inspiration to me. You always are cheerful and caring and with compassion. It is very evident that Jesus lives in you the way you reach out to others. You share your experiance, strength and hope. It always warms my heart when I get a PM from you and know you are thinking of me. Lord bless you today.

 

[pjm220]

What a wonderful thread! Thank you, Lorna, for your beautiful story. And I agree, Ann, you have a very uplifting presence on the forum. It's hard to deal with all that we are loosing. And it's harder still to remember what the disease adds to our lives. We need constant help, from others and most importantly, from faith. This is not a disease that can be handled alone, that's for sure.

 

[abbas child]

Jo, your husband is also a "Gary", like Corinne's--only he's your PALS. I found that to be a coincidence... The CALS Gary is a hero, not just as a husband but also in posting his adaptations for the ALS community. It is hard to be a caregiver and not lose the role of husband/lover. I think you definitely have it in you to do well and to remain Gary's wife.

Diane, dear friend, you have had so much pain with your disease. I've watched you in wonder as you've dealt with it. And, we all "need" to get stuck in the refrigerator and to enjoy the lunacy.

Rox, you have had a very fast progression, and done it with grace. I had two and a half years between first weakness and ALS diagnosis... and lots of time to come to terms with this. You are an inspiration to ME!

Lorna, with your crazy number of ALS patients under your care, knowing that only one requires an army...you are amazing. You'll probably write a book one day. Ha--they'd better behave, right?

And Pam. You are such a dear, gentle spirit. The disease does add to our lives. Along with some very tough things, it allows us to have a totally different perception of life. The harder the physical is, the greater the spiritual life becomes. We are agreed in regard to the importance of faith.

Love you all.

 

[LauraW]

Thank you, Lorna for sharing that. It is important that in this life, we find people that we can lean on and who we can let lean on us.

 

[LornaDoone]

... It is important that in this life, we find people that we can lean on and who we can let lean on us.

Perhaps it's as simple as an ego boost. Knowing you have helped someone or made their day brighter is a rush. Makes you feel good inside. Gives you renewed energy.

 

[LizT]

Id tend to agree with that, Lorna.
I feel like complete crap if my PALS is having a bad day and there is nothing I can do to make it better.
and i tend to feel better about the whole situation when he tells me how much he appreciates me.
validates all the hard work.

 

[tdamess]

sounds like you met a wonderful person

 

[dentists]

Perhaps it's as simple as an ego boost. Knowing you have helped someone or made their day brighter is a rush. Makes you feel good inside. Gives you renewed energy.

We seldom find people like this and it is great to know, it gives people hope that there are still those people you can count on.