Old 03-19-2011, 03:54 PM #1 (permalink)
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Default blessed?

I hate this disease with all my heart, cry and get depressed and miss my life like mad. But a weird thought has been worming its way into my heart and head lately - that we are experiencing an amazing though terrible happening. We are seeing/feeling our bodies, our lives, all our abilities being stripped from usq; yet our brain is separated from it all so it is like we are privileged in a way to experience a deconstruction in a way that other people never ever will. IT IS HARD TO EXPLAIN THIS HORROR as anything other than that - horror, but this niggling thought persists that we are experiencing something special in a way and getting to inderstand and know so much more in the process.
OK that thought comes when i am about to drift off to sleep and for sure i'd rather live without the "privilege" but who else has a choice of to have a trache or not? we have experienced far more extremes than any other "normal" people

love you all to bits and thank th epowers that be for letting me know you all
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Old 03-19-2011, 04:08 PM #2 (permalink)
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Default Re: blessed?

Iris
Your message has touched my heart! My sister often speaks of this when i talk to her about my PALS. She says that this disease gives PALS an opportunity to really know that they are more than just there bodies... if that makes sense.
So glad you are finding the strength to post. its nice having you here.
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Old 03-19-2011, 04:10 PM #3 (permalink)
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Default Re: blessed?

Iris, although we probably have somewhat different sets of what we're experiencing in the way of thoughts, I think there's a whole lot of truth to your sense of having the brain separated from the body's deconstruction. I think it's a very real blessing... very helpful. Then, the thought kicked in as I think of the horrors in Japan and other areas/nations right now, that there is so much suffering in innumerable ways--ways we likely will be spared from knowing first hand. And in terms of "natural death", I remember my mother's perplexed state after strokes and dementia had taken her entire life's memories for a time. And I think of her embarrassment over it. As though she had done something wrong...? The continuum is unending. Now that I've shared that bit with you, I'll return to normal and say that I think most of us can lose parts of ourselves, grieve the loss but if we really want to, we can remain happy out of choice and maybe a ferocious desire.
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Old 03-19-2011, 04:16 PM #4 (permalink)
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Default Re: blessed?

Iris, please forgive the heaviness above. I'd just PMd you and thoughts on an international scale were front and center in my mind's eye...and then my mother snuck in. I love you.
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Old 03-19-2011, 04:28 PM #5 (permalink)
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Default Re: blessed?

Iris, it is so good to hear from you. Your lengthy post lets me know your mind is as full of thought as always. I too believe I have been blessed with the demon called ALS. It seems to me that as my body looses function, my mind becomes more sensitive to "life" all around me. Sort of like a blind person who refines their sense of smell and hearing. We have been given an opportunity to use our minds with nothing obstructing it!

I look forward tomore posts from ou in the days to come - you and Ann brighten my day and make me "think".

Hugs,
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Old 03-19-2011, 05:33 PM #6 (permalink)
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Default Re: blessed?

Iris, my husband has it, not I, but trying to find some glimmer of light in this darkness, what you just wrote is what came to my mind. That increasingly as exterior doors of physical abilities close, others open, that of interiority. Interiority is the only thing that can explain how Buddhist monks can sit for days without moving. They moved inside themselves and by degrees must surely enter into this interior space, growing increasingly less aware of the body.

I appear to have the traits of empath. It is good for empathy but not very good sometimes. For instance I have to protect myself by not reading some news headlines. When I do, it is like I am in that person's body or situation. In that manner I experienced Als when I first read of it and it kind of left me traumatize to where I am not able to read some articles or posts without crying and exiting because it got too hard and too painful. Hence I often find myself wondering what it is like, my physical body closing down on me and stem the sense of panic by telling my mind to calm down. I believe the worst is that sense of panic. I would tell myself, I could use my mind to calm down and gain control and then it would not be as bad. I believe when we reached some extreme states, something else would enter in and help us endure it. You affirm it today.
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Old 03-19-2011, 09:44 PM #7 (permalink)
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Default Re: blessed?

In that I don't have ALS, I cannot shed light on the subject you broached. I can say that I am so happy to see you back in full swing on the forum. You have been missed.
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Old 03-19-2011, 10:31 PM #8 (permalink)
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Default Re: blessed?

Iris great to hear from you. You are correct we are all blessed for many different reasons. One of them being that we do not lose our ability to think, or feel emotion, to love and to be loved. We do not lose our memories and still have the ability to create new one's. You are correct, it is not a privlidge I would request, but being in touch with my emotions, thoughts and feelings and knowing they will not escape me is very comforting.

I hope you are well Iris.
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Old 03-20-2011, 02:43 AM #9 (permalink)
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Default Re: blessed?

Iris, It was good to hear from you. Thankyou for sharing your inner thoughts with us. It is amazing what goes through my mind everyday. The emotions can go crazy. Please keep writing to us. You are such a valued fellow PALS and a wonderful lady. Bless you.
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Old 03-20-2011, 11:29 AM #10 (permalink)
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Default Re: blessed?

Iris, you are really on to something:
"we are experiencing something special in a way and getting to inderstand and know so much more in the process.

This is surely the hidden gift in this monstrous disease. So many of us have experiecned this in fleeting moments, like you did whiledrifting off to sleep. How wonderful of you to share this with us. I am still walking around and talking, though a bit slurred now and then...and your words give me hope. When I think of not being able to move or talk, I go crazy inside...but then, after I get past that intensity, I come to these thoughts: I am not just what I can do or say....what am I?, Who am I? What is my purpose for being if i can no longer do stuff? and the answer comes softly and gently: I can love and be loved. Iris you are so much loved here in this Forum Family. And we feel your words here in the depths of our being...because we missed you when you were going thru your private hell, but now you are emerging, and you bring us so much joy! I'm thinking too of Barry, and others here who are suffering...when you post that you are not giving up, it pulls all of us up and out of this dark hole called ALS. I thank you!
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Old 03-20-2011, 01:34 PM #11 (permalink)
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Default Re: blessed?

Blessed are we to be given the gift
The ability to learn where our spirit stands
As mind from body becomes the rift
We submit ourselves to other's hands

Where we can't go and what we can't do
Limitation and liberation simultaneously achieved
Our failing bodies give us the clue
Of the horrors and wonders of the life we've received

"Why me?" is a question often asked
As we struggle to live
We cannot know and so we are tasked
To become better people and to learn how to give

Have patience and compassion
For those who do not know
Touch many hearts with words not action
Do not give up and continue to grow

All we can do till we meet our ends
Is share happiness and hope in the face of the beast
Make things good for our loves and our friends
And be remembered for the most not the least

Last edited by BarryG : 03-20-2011 at 01:45 PM Reason: Fixed formatting
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Old 03-20-2011, 07:26 PM #12 (permalink)
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Default Re: blessed?

I agree that the path to actually accepting that you have this disease; that it is real does provide us insights that others may never see.

Physoctherapy might have been a happier way to find them....but alas; we are all here.
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Old 03-22-2011, 05:16 PM #13 (permalink)
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Default Re: blessed?

Iris - I agree with your view and so does my PALS. We just returned from a wonderful trip with the kids and made phenomenal memories. He has said that he feels blessed to be able to say goodbye, somewhat, on his terms. Although I cannot completely understand how a PALS feels, I do sympathize and am grateful that I get to share this experience with him.

Love and light
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Old 03-22-2011, 09:55 PM #14 (permalink)
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Default Re: blessed?

Barry, I like your sail boat ! And love your poem...you really are good at it! Had a beautiful sunny spring day, out at the Sound, with the water as blue as the sky, and watched sail boats bobbing by....I feel the current of life flowing all through and around me. Grateful.
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Old 03-22-2011, 10:06 PM #15 (permalink)
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Default Re: blessed?

Iris....nice to see you back on the forum..you have been missed! Barry, I loved your poem...so much..printing it out! Thanks for sharing!
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