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Unfortunately, the post titled "Skin is Boiling" is closed so I can't respond there so I'll start this new thread.

I doubt most people here need another lesson on ALS's vicious toll on people but this is nevertheless a very poignant one. I have spent most of the last year reading the many informative and compassionate posts here and have until recently been quite struck by the positive attitudes of those here.

A couple of weeks ago, I posted that I wanted to help someone afflicted in some small way. My wife of 22 years has bulbar-onset ALS but at this point is still quite independent and won't let anyone do anything for her that she can do for herself. Other than a cure, she has everything she could possibly need at all times. She is doted on to what level she will allow at all times -- usually by me but occasionally by others. If there is any doubt, following is a part of an e-mail she sent me just the other day.

You are compassionate, strong and supportive. My personality is independent and I go half-cocked into a situation and I know you will be there when I fail. You [are] my once in a lifetime Teddy Bear. No one has given [me] the support and the love that you have given. You accept [me] for who I am and let me grow in [to] the beautiful woman I am today. You bring out the best in me. You saw me through the worst times in my life and I [am] forever grateful and you are protecting me now. I am strong and positive because of you. I lived a life that [is] full. We saw wonderful things and had [a] great time doing it. I knew my life would be short and I don’t waste time being angry.

I read many posts and realized how overwhelmed people can be and with a ton of compassion for sufferers and a small amount of time to give, I just wanted to help in some small way. After that post, I was viciously attacked on multiple fronts by several people who I can only assume have allowed ALS to color their judgment. What on earth is wrong with you people?

I am not a troll, I am not someone looking to prey upon others, I am not someone who has no compassion for his own suffering wife. I just wanted to help and wanted nothing in return and for that I was maligned and my character literally assassinated. After some further clarification, I was apologized to by many of those that posted nasty responses but this thread that I just came across is well beyond the pale. To those that posted negatively in response to my original post, your sense of right and wrong was not taken by ALS -- you willingly gave it away.

Despite the nastiness of some of you I did indeed find an opportunity to help someone and will continue to give what I have to my wife first and others in need as long as I have strength in my body, compassion in my heart and bandwidth to spare. I -- unlike many of you -- will not allow this horrible disease to take away one of the things I cherish about myself and that is my compassion for others. Many of you should be truly ashamed for your posts.

This is my last post on this forum. I will still come here from time to time but you will not read anything else from me. I hope you're all proud of yourselves.
 
Just so you know...the person who wrote that post did apologize to you AND she was having a very bad day. Sometimes we can be mean and nasty. We have some very heavy loads to carry. No one is choosing to feel the way we do. Believe it or not...everyone does not have a sunny...what can I do for you..personality ..and they cannot..no matter how hard they try. And you know what. I love them anyway. I have lots of compassion.
 
I'm so sorry that your post met with such negativity. It's often difficult to get a real feel for situations from just a paragraph or two when the writer is unknown. Kudos to you for reaching out to help others! I'm glad your efforts were appreciated. Wish that you lived in our "neck of the woods". We could surely put you to work.
Please understand that some of the posters were only concerned that you not miss any time spent with your PALS.
Good luck to you and your PALS on this journey. You sound like a very loving and committed couple.
 
Deb,

I will break my vow of not posting anymore just to thank you for your kind words and support. I also wish I was close enough to help you in some small way but rest assured there are others near that will help. As long as you're open to the possibility, you'll find each other. I caution you to be wary but open. Even my wife wants to help those in worse shape and I had hoped that was something she and I could do together.

Please accept my sincerest condolences for whatever circumstances brought you here. I wish you the very best. Well, back to my forum isolation now...
 
...your a better man than me....gunga din........johnny
 
It's indeed wonderful to hear from you again despite the unfortunate events of the recent past; I am happy to read that you are ably assisting someone on a one-to-one basis. (although I'm ever recruiting fundraisers for the cause...)

I concur with you (and am deeply embarrassed) that some remarks were unequivocally judgmental of you and of your intent. There is no excuse for this, lest we are imperfect human beings. At times, I admit, attempts to discern motivation, are over zealous and myopic. (Pleading guilty) Your experience, I believe, was/is an isolated incident and does not exemplify the collective mindset.

Being new to this disease, my short time on this forum has been overwhelmingly positive. Tremendous support, lots of chuckles and unrelenting encouragement by selfless care-givers and fellow ALS folk. People actually taking time to help me- a total stranger. My questions are answered. My fears are acknowledged.

I have been pulled up from the dark depths of despair and terror to a warm sunny place. This achievement would be implausible without the love and commitment of my remarkable and compassionate husband aAND the big-hearted people of this forum.

Your wife's email is a testament to all that is magical about life. At the end of the day, she and I are truly blessed.

Please, don't throw out the baby with the bathwater. Your empathy is also needed here.
 
Heartbroken, I think what your wife wrote was lovely.. I rarely post here anymore because of such negativity, not from everyone, just a few. Hugs to you and have a good day. You seem like a wonderful man... Please judge the whole forum on just a few and leave ok..
 
Why do you think I closed the thread everyone? Because, I felt bad for misjudging a guy due to my own emotions at seeing my dad's rapid decline that I couldn't imagine his wife not needing his assistance 24/7. I couldn't erase the thread but didn't want to cause anymore problems so I did the next best thing and closed it. I apoligized to him. Erased all negative comment I wrote etc. Sorry, that is all I could do.
 
Heartbroken,

I had not been on in a while and did not see the threads in reference. I'm so sorry you were treated in such a manner, but as others said, it is difficult to read some folks who just might be here to have a good time at our expense. That being said, I wish that you not judge as a whole and see that we are human with many flaws.

If you and your wife truly want to help, please contact Stu Millheiser here. He could surely use the help.
 
Aagh, I got modded.

To Heartbroken,

My post went to mo der a tion. Short story, if you truly want to help, please con tact Stu Mill heiser (squish the M to the r for last name). He is a re gis tered mem ber here. He could use any help you could offer.

Thank you.
 
self praise and fishing for compliments...maketh the man...not.......johnny
 
I think some of us got off on the wrong foot here. I was maybe a bit quick to judge, but you must admit, heartbroken (and I know you are still watching this thread) your first post was a bit strange. For you to come on here and tell us that you were heartbroken that your wife had been diagnosed with ALS and then, in the next breath tell us you wanted to help someone else, was a bit hard, to say the least, to comprehend. People on this forum are fighting for their lives and their carers are sacrificing everything they have to spend every moment with their loved ones. No wonder you got the answers you did. Maybe if you sit down and think about your actions and our reactions you will understand us better, maybe if you stay on this forum and let us help you get through this with help, advice, sympathy and humour, we will understand you better. I wish you well.
 
Heartbroken,

The last few months have been very bad for most members here. Forum leaders that were and are loved are gone. So many have lost their loved husbands or wives.

There are so many here that struggle day to day. I can understand why some would wonder why you wouldn't want to spend every waking moment with your wife.

At the same time, I also understand the need to help so,eone--anyone in any way you can.

If your post had come from someone well known on the forum, the immediate reception would have been much different.

Everyone here has bad days and finds themselves lashing out. It's human nature. But forgiveness is as well.

Contact the ALS in your city and see about respite care options.

Your offer is very kind. Don't run off. I think you'll find wonderful people here.
 
I have no idea how old heartbroken or his wife is. But, I know my husband and I were 27 when we got married and just celebrated our 19th anniversary. We both have to work to get by. My husband works extremely long hours and doesn't have any spare time except to spend time helping with the kids or things needing done around the house. I know Heartbroken's wife would most likely be on disability but I would assume he would have to be working to pay for things not covered. Maybe, he's already retired? I don't know. But, otherwise I just am puzzled as to when he'd find the time to volunteer. Also, his e-mail from his wife was touching. But, who sends a e-mail to their spouse who supposedly lives in the same household? I would think you'd tell them what they meant to you to their face. I'm still puzzled but I'm done discussing the topic.
 
johnny, that was a deep dive in the ocean. You came up with a big one.
 
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