conflicted, not for newly diagnosed

azgirl

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sharing my feelings...

We have entered the hardest stage. It’s difficult to understand if you haven’t experienced the dying process up close and personal. I want to let go and fly free of all the pain and suffering. I want my family and dear friends to be set free from this nightmare and move forward.

But do I really? It’s a struggle to let go of loved ones and the plethora of experiences that have blessed my life with extreme joy and laughter. How can I let go of all this? I don’t want to go, but I have grown weary of a life spent sentenced to a bed and chair. Life in the “hole”, which I call spot I’m parked daily, is getting awfully old.

I am conflicted with my heart split between life and death. It is a fine line and I wonder if the arduous work to keep me alive is right for any of us. It would be so easy to quit trying, quiet my brain, let go, and let the forces pulling my body to the other side take over.

I feel as if I have control to a large extent on this final call and that gives me great comfort. But am I strong and brave enough to make this decision? The answer for that, at least for today is no. The conflict lives on inside me for another day. And I promise this day will not be wasted. It will be hard but we will do it.
-kay
 

Nikki J

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Love you Kay
 

Bestfriends14

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Hugs and much love to you, Kay.
 

KarenNWendyn

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Like others, all I can do is send my love. You’ve been a source of strength and inspiration to so many of us here including myself. The life force is powerful. But ultimately you’ll feel it in yourself when it’s time to let go. Know that you are loved.
 

nona

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I hear you. Thank you for verbalizing what goes my mind daily. I feel the same conflict.
 

MarieLaure

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Thank you Kay. Love.
 

KimT

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Kay,

Know how many of us you have touched and helped on this forum. I owe you so much for inspiring me to get in the pool and to fight for the elevator function on my chair. YOU made my quality of life better.

I love you and love never leaves. It is released into the universe and goes where it is needed.
 

KarenNWendyn

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Thank you for verbalizing what goes my mind daily. I feel the same conflict.
Me too! And everyone says I have a ways to go. I guess that internal conflict gets stronger as the disease progresses. Oh joy. I’m sure many of us feel/ think it. Kay, you expressed it quite eloquently.
 

affected

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Oh Kay, you are such an inspiration still every single day.
No one knows how deep this truly is until they are there.
My Chris said to me once - you think you know where you would draw 'the line', but the closer you get to it, the more tempting it is to move it again.
I love you my friend, and know that whatever you decide at whatever point, it is the right thing both for you and your family. They will know this too - every day they know already 💜 💜 💜
 

Jlynn

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Kay, I was here yesterday but couldn't respond as your story made me very emotional. My heart breaks for you. You may feel like you are not brave enough or strong enough to make the decision to be done fighting this awful fight but girl I think you are one of the bravest and strongest people on this forum or anywhere for that matter.
I will be walking to raise money for ALS in Portland Maine in September and I will be thinking of not only my brother but all of you here living with and caring for a loved one with ALS every step of the way. You are all my heroes. Sending you a huge warm hug. ❤
 

Narrowminded

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Kay I cannot imagine as a past CAL how my DH did what he did for so long. As a CAL I will tell you that what we want is your happiness. Yes, it is hard work, but worth every single second. You will know when the time is right. You have been a huge inspiration. Thank you. Love you too.

Hugs,
 

Kristina1

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Everything you write touches me so deeply. Thank you <3

And like others, though I am not in the dying process, your conflict resonates. I used to be so sure I wanted trach when the time comes to prolong my life. But as my quality of life decreases even though Im still a ways from that point, Im not sure I would want to go on indefinitely. Many hugs. I'm selfishly glad you're still here.
 

notBrad

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Kay, only you can make the choice. I keep in mind that it is irrevocable. I am not in your shoes though. As others have said, you're very deeply loved.

What keeps me going are several things. One is that our sweet boy Chance is on his last legs and I want to be there for him. My wife is a fragile soul and losing me and Chance in close proximity would be more than she could bare..

Then there is my girl Angie, the thought of my dying and her thinking I left her is more than I can Bear .

And there's my last surviving brother, my wife, my daughter, and my mother.

And the project I am programming. It is an eye gaze controlled wheelchair using a tobii eye gaze. The current ones are pretty primitive.

And there's the activity of shooting. There is a couple of ranges within 200 miles that have rifle courses 600 yards or more.. So I can go and shoot my rifle.

The thing that makes most of this possible is I have a group of friends who pitched in and bought me a wheelchair van. Ostensibly so they wouldn't have to keep driving up here to see me, the expectation being that I am now obligated to drive down there and see them.

The point I am making is that even with all this there are days when I go "screw it, game over man.".

So if you feel like calling it a day several days in a row, you are under no obligation to anyone to keep going
BUT
if you want to keep going then do so without any reservations. I would guess that anyone who is around you is glad to care for you and in no way would consider it a "burden" based on how much you are loved on here.

So there you have it, a very long winded response that says essentially do what you want...
Love Brad
.
Glad I could help....
 

nona

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This thread spoke to me today as I struggle to find weekend coverage because friends and caregivers have other plans. Having a pity party and struggling with ingratitude for my friends who do so much yet have to live their own lives, damn them. This is when I truly feel helpless and desperate.
 

azgirl

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nona, ir I think we all have been there and it's so hard to feel left out. That is when I take some mmj and put on music and let my self drift to sleep.
!
so sorry you are feeling down,. You have friends here always. Hang in,. - kay
 
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