Status
Not open for further replies.

ghii

Active member
Joined
Mar 23, 2010
Messages
88
Reason
CALS
Diagnosis
02/2010
Country
US
State
Texas
City
CC
It came to me yesterday - sometimes one could feel guilty being happy when the ones we are with are suffering. I thought, - if the darkness go on for months, years, how could one live it. It came to me, it is all right to find happiness in the midst of darkness. I always remember what Thich Nhat Hanh wrote, that when we are suffering, we should still be able to see the rose and enjoy the beauty of a rose. I do have times of happiness during the day. My morning walk - I clear my mind of all things and walked, mind in meditative mode. And gardening. I do little of it but I do enjoy growing ficus from seeds. The seeds are tiny, it takes 30 days to 50 days to see the little green leaves coming out. Looking at them gives me so much pleasure. At night when my husband retires to bed, I watch light movies, movies with dogs, children when I can get them. It is compartmentalizing, staying above.

My husband's symptoms started two years ago. When it was just starting, I was able to tell myself, I have to stay above, I cannot get pulled down into the dark hole. I would be of no help to him pulled down into that dark hole. He was depressed then, finding it hard to accept getting old. Now he is at peace with his condition which makes things easier. On finding it it is Als, for a while I forgot I have to stay above. I was reminded of it again yesterday, finding lights in the midst of darkness. My friends told me I have to take care of myself, that is one way of taking care of myself, finding lights in the midst of darkness.

Mine is mild at the moment, no comparison to what many of you are enduring here.
 
holding youi in my thoughts and my arms, beautiful person
 
Gertrude, Maybe you could create a mediation "slide show" or a tape for PALS and CALS and post it under the Stories of Hope thread? I also love the writings of Thich Nhat Hanh and find them very soul enriching. Think of all of the joy and peace you could offer to everyone! Maybe it would be something that could be sold to raise money for ALS Guardian Angels?! How about raising your Ficus and selling them as "Ficus FIGHTING for a CURE for ALS"! I offer you these suggestions because I find that I cope better when I feel like I am empowered to doing something to make a difference. hugs to you this morning Kay Marie
 
ghii,

Very helpful thought. My journey with Liz is over, but your words strike a note with me. The first two years, happiness wasn't hard to find as Liz was a very positive person and shone a light through all our lives. As she deteriorated though, so went my happiness. The caregiving took a physical and mental toll on me that I really can't describe. There was guilt, and actual physical pain from all the effort required, but mostly it was the helplessness of watching the love of your life just wither away before your eyes. I found some sort of peace those last two months (I'm still not sure where it came from), but it did indeed make life more bearable.

Thank you,
Dick
 
ghii
I have those same thoughts sometimes. I think of those happy moments as little gifts from God but at the same time I do feel a little guilty that I should be able to laugh at all when my wife is dieing. Still she sometimes is blessed with those moments as well for wish I am most thankful.

Another thing I find myself doing is being angery with friends as they go about enjoying their lives. We have some very very good friends that live out of state from us and I read on Face Book how they are planning a cruise for this summer and differant things and I find myself thinking "How can they do that, how can they call themselves friends and still be having so much fun when we are going through so much suffering?" Of course the rational side of me calls myself an idiot and I realize that as good of friends as they are their whole lives don't revolve around us.

Thanks for the honesty
Jim
 
CAHPAH, OMG, I have that same type of feeling when reading posts on FB about people doing and planning things, even going out to dinner. Not so much "how can they be having fun", because alot of these people aren't close friends, but definitely a moment of envy and a feeling like they're clueless. Ridiculous I know. There were plenty of people suffering when I was going about my life. The bottom line is we're human and are bound to have these type of feelings both as caregivers and I'm sure PALS too.
 
I am still finding my way around this site and did not read these posts here till now. There are a lot of posts I am sure I am missing. Thanks.

Pepsiman, that is what I was thinking, that if we could see the sun, we should look at it because the days will come when it might be all darkness and not a light will shine through. I am you were able to find peace the last two months.

CAHPAH, I caught myself feeling guilty like I have no right to be happy and stopped to look at it. Yesterday I was thinking on it again, being given permission to seek some moments of happiness - when it came to me, it could come from me. I should be able to give myself permission to seek some moments of happiness. It would be like taking care of oneself.

gertrude
 
We received pictures via email of my brothers trip to Jamaica and a caregivers trip to Barbados. My wife said " why are these people sending me pictures of places we can't go? " I didn't have an answer. We used to travel a lot. This really sucks.

AL.
 
Kay Marie, when I was in Texas, I would stick cuttings of ficus into pots and almost all of them grow. It is not the same here, desert country. It is very hard to get seeds or cuttings of ficus to grow here in the desert.

I am not very good at technical things. A few years ago, after trying to push myself this way and that, one day I asked myself what am I best at? The answer came, what I trained for, 11 years as a nun - meditation. I stayed with that since. Daily, I stayed half an hour in meditation, on Sundays I join a meditation center, staying all three sessions of half hour. Just now, sitting in meditation, I found myself praying for all of us here. gertrude
 
Gertrude, I wish I could join you and share those moments.
 
Morning everyone, I find it hard when I hear my friends are doing things without me or without richard and Me...
We are still included in somethings but not all. the steak cookouts, Not the trips to places with the girls Like i always did. They don't usually tell me about it but i seem to find out someway through their conversations ... I know they should and they CAN for goodness sakes,but it does make me realize that I am again losing things I used to do.... Very sad feeling. Then I pick myself up and say to myself... Look at all the things you can still do . Be happy with those things.. Right? Yes ,that is right.. Hugs, Linda
 
Linda, have you made it clear to them that you can still go to the steak cookouts but just cant eat? I have tried to attend as many social functions as I can and I know that those that are associated with eating are the most uncomfortable, not so much for me because I am (mostly) over it but for others who are bothered that I can't eat and can't imagine what it is like to not be able to eat. As long as I can be there with my computer I can join in the conversation and taste the food vicariously through everyone else.

As far as not being able to do things and go to places that friends and family talk about, well good for them I hope that they have a good time and truly appreciate just how lucky they are. As small business owners we have never been able to afford the time or the money to go on many trips and now I have physical limitations so it is even more difficult. But that is OK, I have a nice house, a comfortable chair, lots of books, my friends here and it is spring so I am happy. :):)
 
I felt the same way when my mother was diagnosed, I even got mad at the TV for showing comedies. I thought how dare they, don't they know my mother was diagnosed with ALS. Then I realized how stupid I was being and kicked myself in the butt and tried to live my life the way my mother wanted me to. She has a really positive attitude so I try to do the same. My moms birthday is tomorrow and she is getting really spoiled, she has gotten so many flowers for her birthday she said to me wow you would think I was dying. That is her sense of humor, a little warped but still funny. I guess my message to everyone is please don't deny yourself some happiness, you truly deserve it.

Dana
 
Dana
I can appriciate your mom's sense of humor, I live with one of those too. Our house backs up to a patch of woods and the other day we looked out our large picture window and there sat a huge buzzard on a tree branch. My wife (diagnosed 09/07) looked at me and said just as dry as you please, "How do you think he's waiting for?" I have always loved my wife deeply but I am developing a whole new admiration for her as she deals so bravely with her ALS. She is truely incredable; much like many of you I have met on this forum.

Jim
 
Gertrude,

I hope to see you post more(as well as the rest of you). You have a peace about you that I envy.
 
Status
Not open for further replies.
Back
Top