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I've pent most of the last two weeks in an I.C.U. where my brother suffers from a rare syndrome named Guillain Barre. Other than blinking he is immobile. He is fully conscience.He blinks once for yes twice for no. There is no cure. If he is awake I sit where he can see me. I play music and try to stay out of the way the various care givers. I feel useless.

I know he is a believer and so are most of the people who visit him. They pray for him and talk about god. He receives all this with affirmative blinks and in those moments I don't see the terror in his eyes.

They tell him about the nation wide prayer chain at work in his behalf. They are confident that god will pull him through. They really believe they are doing something for him and I am pretty sure my brother is comforted.

I can't help but wonder, where is the comfort for a rational mind. I could sure use some about now.

Casey07 7 Nov 24
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26 comments

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7

Best wishes to you and your brother. You may take comfort in the fact that you recognize the difference between reality and fantasy. You are heroic in that you spend so much time with your brother. You are doing good.

I sometimes wonder about that...I almost envy people their faith at times of crisis, it seems to me to be less of a burden if you believe that if you have a strong enough faith god will intervene on your behalf, than knowing the reality that you’re on your own.

@Marionville In such a situation, I would not argue against my brother's faith. I would remain silent about that, and speak of my hopes for his speedy and painless recovery. My atheism would stay inside my head.

@Marionville I disagree. I recently spent the last weeks with a realist who accepted that his life had run its course. There was so much peace. My admiration overfloweth.

@CallMeDave I am not talking about death or imminent death...but an illness such as this one where recovery is possible, or some other crisis in our lives which we have to endure.

@BestWithoutGods I would never dream of imposing my personal belief (or lack of) on anyone, especially at a time like this. I never attack anyone’s faith..ever. We don’t have any right to tell others what they believe is wrong...that is why I dislike the religious when they try to impose their beliefs on me and say I’m wrong not to believe in god.

5

If I were in your brother’s situation, I’d be praying someone would ask me if there was something I wanted to say besides yes and no. And when I blinked “yes” to that question, I’d hope they would engage me in a guessing game that could, through yes and no answers, narrow it down to the fact that I’d like some kind of system like Stephen Hawking had that would enable me to speak proactively instead of just hoping someone would ask the right question.

skado Level 9 Nov 24, 2019

Of course. That's what we do. I'm making some flash cards with key words and phrases.

4

I knew of someone who was afflicted with the illness and went on to make a 100% recovery. I hope the same for your brother. I'm sure these are challenging times and if your brother could speak he would be grateful for your support. It's great that others are praying for him and this appears to comfort your brother. I hope for the best possible outcome for him and for you too.

4

I sincerely hope he recovers from this ordeal against the odds and you will all have reason to smile once again. Hang in there!

4

I'm so very sorry for you, your brother, and your family.
At times like this, the comfort is in reflecting on the lives you have led together and the time you've shared.

Also, remember that 85% of those afflicted with this syndrome eventually make a full recovery, from what I've just read... so be thankful for medical science and the professionals who are going to help your brother through this. (Not a prayer chain... although, if he believes, the psychological effect could help, I guess.) This is no death sentence, as terrible as I know you feel right now.

Seek out a counselor to help you deal with what you're going through. Please don't feel guilty for taking time for your own needs. You need to be in good shape, to be there for him.

To me his situation is worse than death. Years ago, over a few beers, we had a discussion about this very thing. We promised each other to help the other one die. After sober reflection I told him to to forget it. The legal consequences for the surviver are prohibitive.

@Casey07 It's hard to fathom at this time, but remember, the vast, vast majority do recover from this. The odds are on his side.

3

I find my comfort in knowing there is an end to this madness and hoping to see the end of it. Not existing is, to me, so much better than things like your brother is going thru.

3

I'm sure that anything and everything you do for him is giving him comfort and easing his burden, and that he appreciates it greatly. Whatever things you do for him are totally useful.

3

I could find no comfort in believing a god could help, but chooses not to. When my brother was killed on the job, when my daughter went through a miscarriage at seventeen weeks gestation, I found some comfort in knowing that these happened due to the randomness of life and were not part of the cosmic plan of a god so needy for worship that it allows such suffering.

Try to find comfort in just being there for your brother. He does not have to know your innermost thoughts, only that you are there for him. I think what you are doing-- making sure he sees you, playing music for him--is far from useless. You are showing him your love-- in the here and now--where it truly matters.

3

My thoughts and good wishes go to you and your brother...whom I hope makes a good recovery. I have just read about that syndrome and note that there is a good chance of full recovery although it may take some time. Take comfort from knowing that he is getting the proper hospital treatment and the support he seems to be getting from his religious friends is helping him too. We who don’t believe cannot understand the mindset of a true believer, but I have often thought it must be easier in times of personal crisis to have a belief in a higher power, and if it gives him strength and comfort at present that can only be beneficial to him. You are doing what any good brother would, and your presence there is more than enough, he knows that you are there and that you care for him and will be there when he has recovered too.

3

So sorry for you and your family. As bad as it is right now, remember that most everyone recovers, and does so significantly.

The comfort for a rational mind may come from the acceptance of reality, understanding that life is unpredictable and complicated and knowing what one can and cannot do. I hope you take comfort in knowing that you are helping your brother with your support. I am certain he is drawing strength from your presence. I am a firm believer that stress is a major factor in how well one's body deals with illness. Having loved ones around, providing support (whether with prayer or music) is the best thing fro your brother.

In the meantime, have you also considered giving him audiobooks, or reading to him?

3

Holy hell, it sounds like you all are going through a bunch of shit right now. All I can think of is ways to pass the time if the brain is locked-in. Between visits of all the religious bs, ugh. Have you considered bringing his favorite music through headphones? Or some great secular meditation? (There are short guided meditations near the bottom of this link that might be useful). What else might he like? Books on tape? Books read aloud? (I would always suggest something like alice in wonderland or the wizard of oz for those who are infirm, but those may not be his cup of tea). Some pot? Or, perhaps a fancy app on an iphone that does eye-tracking and surfing the web? I'm sorry for his situation, and I'm sorry that my thoughts only go to thinking of ways to pacify/calm him. It's what I would hope someone would do for me if I were in that situation.

[mindful.org]

[google.com]

[news.harvard.edu]

[gbs-cidp.org]

For mindfulness, hook up to any Jon Kabat Zinn talk on youtube...completely secular, and completely wonderful, whether it's a 10 minute exercise or a 2 hr talk.

And be sure to read that link to the guillian barre organization...they might be able to help...says they have a generic set of communication cards, and org chapters in alot of places to reach out to!

Headphones are 1000% better than just playing music!!!!!!!!!! After my stroke the nurses gave me some and I swear I felt it unraveling the tangled skein my brain had become!

Thanks for the info. I'm on it.

2

I’m sorry you & your brother are going through this. There is hope that your brother will recover. Understand it will require months of daily OT & PT. And that the recovery may not be complete.
Ask your brother what he wants or needs then advocate for him.

CS60 Level 7 Nov 24, 2019
2

Perhaps the real comfort for the rational mind is that in its self-awareness, it understands that it sees beyond the bull that is going on around it . . . . and not only is there real strength in that, there is foresight, and also much more room for compassion. When you see things as they are, you understand where they are likely going, and, you also understand more clearly the implications, the ephemerality of life, and, as Nietzsche once said . . . . "There is not enough love and goodness in the world to permit giving any of it away to imaginary beings."

2

I am so sorry for you/ your family/ his troubles, but "shit happens" can be oddly comforting as things Are random, not directed at you, which is the 2-edged sword hanging over believers. Best wishes!

1

I would try to be comforted in knowing that he is comforted, even if it is in his faith. His situation is not about you (no offense). Your BEING there is solace to him, I'm sure; he would probably be very saddened if you weren't. Bring with you things that you two can relate to that aren't religious in nature: memories, photos, etc. You don't have to discuss religion just because he's surrounded by it! Best of luck!! You're not alone.

1

be strong 4 him

0

Well from what I've read briefly, please let me know if I'm wrong, but some do recover?...if so, there is a little hope there.

I'm not sure how GB affects the brain, but there is a technology called the emotiv headset (www.emotiv.com) that can read brain waves and use AI software to train to use a computer or robotic arm. They have some youtube video demonstrating their technology, its not perfect, but it's something:

Hope it helps.

0

Best I can offer , at the moment , is hugs , Hon .

0

I'm so, so sorry that you and your brother are going through this. My sister has CIDP-MADSAM which is closely related to Guillain-Barre Syndrome, and is considered its chronic counterpart. It frustrates me quite a bit that, as the illness gets worse, she seems to become more and more religious. It's often a challenge for me to hide my feelings over the inane god platitudes. But if they're all she finds reassuring, I can't take them from her, so I consider my silence a gift to her.

I hope you'll find coming here a way to cope and vent a little (or a lot) ... there are a lot of good people who will provide whatever support and comfort we can.

0

Hi from Australia. A friend of mine experienced Guillain Barre Syndrome and came out the other side of it physically intact but mentally a changed man. not changed a lot I'm happy to say. He was full of praise for the hospital care and rehab he recieved in the public health system in Queensland. He told me he had nothing to do but think and with that came acceptanc!. He was told it was quite possible he would die.
I will ask him more about it. In that situation I suppose there could be such a thing as conversion (instantaneous dicovery of higher power etc) but not for a confirmed skeptic. At least not without a lot of self - doubt about the hypocrisy of it! I read here and agree that the only comfort for a rational mind is that it is all going to end eventually anyway. If it comes sooner than you expect that is just shitty luck and just letting go is the right thing to do.

0

I have met and gotten to know a few people suffering with Guillian Barre Syndrome in my time and my deepest sympathies go out to both you, your brother, your families and friends.
It IS heart-wrenching to have to merely sit by and watch as a loved one goes through such things as this and caner, etc, you feel absolutely helpless but you CAN be of some really great help just by being there with them, keep it up no matter what, be the true and real support your brother needs, it will be hard, I know from personal experience, but you can be his anchor point and that is what he really needs.

0

Let him be, they are all brainwashed. Nothing will help him but at least he is getting visits.

0

For those who can find comfort in their faith, I am glad for them because facing it without faith is (to say the least) sobering. Although I have had a full life one has to realize that losing one's life either through extreme debilitation as the case with your brother, or through sudden death is terrifying and unthinkable. Yet we all know it is in the cards for each of us and we must make some kind of peace with that fact for ourselves and for others. That peace for some comes from faith, from high doses of pain killers when it is a painful death and from making interpersonal peace if possible. If not it seems repression is a favorite tool.

0

That is scary disease and fatal unless caught in time. Gradual paralysis rising up the body until breathing stops. If the patient is put on respirator they die, but then can recover if after in ICU and removed from respirator . They do recover from this.

bobwjr Level 10 Nov 24, 2019
0

It appears you find some comfort in the comfort he gets from his religion. I think that's a very important way you show your brotherly love. I feel sure he can feel that love in your presence and music. HUGS💜

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