Life goes on......

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BlueandGold

Senior member
Joined
Feb 28, 2015
Messages
634
Reason
PALS
Diagnosis
04/2015
Country
US
State
WV
City
Sandyville
I've noticed over the last several weeks that my good friends are no longer emailing or calling. Had one very good friend who was keeping in weekly contact with me tell me that she felt uneasy about calling as my speech has gotten really bad and she didn't want to be one of those people who kept repeating "what?". I told her emails are just fine with me, but no further response. Promises of "I'm going to come by and see you" have come and gone. Guess the novelty has worn off. I don't mean to sound jaded but I am a little disappointed. I've always been a very giving person, even to my detriment sometimes. But I have to accept what we always say on this forum, "we are not the only one's that suffer from this disease". I miss my friends, but am more thankful everyday for my new found friends on this forum. Strangers with a bond stronger than that of life-long friends. Thank you all so much for all you do. My life raft in this terrible storm.

Vince
 
I feel you Vince.....social isolation is difficult. Peoples reaction to our symptoms can be very depressing.
Even though our friends have the best intentions, it is hard for them as well. Life goes on for them, they probably have no clue that we need them in this fast pace world.
 
I am sorry. That seems incredibly common. I have a lot of anger about how some of my sister's so called friends dropped her. On the other hand there can be people you barely know who step up.
I do think of you all as friends even though I have only met 2 of you in person. I can not imagine how hard this was before internet with forums and email and skype.
 
Vince, I know exactly what you mean. People can't relate. The "terminal" part of the disease freaks them out. They can't get it out of their minds and they don't know what to say or do, so they panic and avoid us. Even our best friends get really uncomfortable and might clam up.

When Krissy fell ill, all our friends abandoned us. But curiously, our kids' soccer teams gave us cookies and even delivered a fancy home-cooked meal to us. Even Krissy's parents were so distraught that they visited once--cross country--but never visited again when Krissy was dying. They didn't come to the funeral. I figure their hearts were destroyed.

At one awards dinner for our son's soccer team, no one would sit at our table. It was the most embarrassed I've ever been, so we left, wheeling her wheelchair in front of everyone.

This isolation is horrible. But it's understandable.

In fact, I'm guilty of it. When my dad was in a dementia ward (far away) for five years, he couldn't speak, but he could hear. His sister called him daily and simply spoke into the phone to him, telling stories. She was an amazing and enthusiastic talker. But the rest of his family, including me, rarely called. I just didn't do well speaking into a silent telephone with no response. I know it made him feel lonely, but none of us could bring ourselves to call very often. Our visits were short--what do you say or do with a man who is unresponsive?

You're right to say that "strangers" like us have a bond in common. Perhaps we have come to accept the terminal part of the disease. We have empathy with people in our circumstances. I feel a part of me is in every PALS and CALS. I know we would help each other, not just with words, but also with actions. We donate equipment to each other. We sometimes travel to meet each other. A person from this forum came to Krissy's funeral. I would definitely travel to meet and assist a PALS or CALS if they needed it. We are definitely a family.
 
I think many friendships are born out of convenience and don't necessarily carry that underlying depth of caring that rises in times of crisis and/or challenge. When the convenience disappears, the friendship begins to fail. Often, however, we've seen those we considered to be more acquaintance than friend step up in ways that have been totally unexpected and very appreciated. Some people simply don't deal well with their own mortality... let alone a friends. I think they'd rather try to side-step it and avoid than to risk saying something wrong. They believe that they are doing the right thing... when they only deepen the feelings of isolation. And sometimes, the ones we believed to be the better or best of friends actually are.

Natalie... Her husband John and I were Boy Scout leaders together. Natalie and Darcey hit if off when John and I would get together outside of Scouts. Natalie calls several times a week, regardless of how busy or challenging her life is to check on Darcey. And once or twice a month, she's over to bring dinner. For those times, she feeds Darcey so that I don't have to. I've offered to switch and she refuses. "You need a break, too, Jim! Go sit down!" And it is a wonderful break.

Dave... my best friend. When I'm inclined to let the world's spin isolate me from all but Darcey and those within an arms reach, Dave pushes through and calls "Time Out". I stop what I'm doing, make sure Darcey is okay for an hour and off we go... heading out for lunch and catching up on each others lives. Today was one of those unexpected Dave lunch days.

And there have been others to step up and offer to help if we'll simply let them know how. And there are some that by the look in their eyes and the inflection in their voice, you know they mean it. Here... we can come and go as we can or need to. Here... our friendships are grown on sharing and understanding. Here... we get it. We've become a pretty amazing group with characteristics that parallel "family". And very often, that is just how it feels.

And so, my fellow brother Vince... tell me what you found to smile or laugh about today?

Jim
 
Excellent, Jim, I hadn't thought of the convenience angle.

Most friends are "relevant" in some way. They come from work or school or common interests.
But no one can relate to our experience.

So thanks: you guys just inspired me to make a post to my blog here.
 
interesting, i was having a similar conversation with my cals about old friends and new friends. i will more than likely never "see" you all but still think of you as friends and those who i have "seen" for years are no where to be found. oh well! their loss. later chally
 
In some ways it was too easy for friends and family to take a dive quickly once Chris was diagnosed because he shut everyone out an forced isolation on us both. Friends of mine who were offering help and support couldn't come here as he didn't want people doing things he couldn't do, regardless of how desperately I needed help to do them.

Interestingly I did have only a very few close people persist and some people that were not so close. But I was swallowed up in the embrace of what became my family here and it was totally critical.

I've renewed connections with some people who allowed ALS to change our relationship and have simply let others go. It's a big world and there are always more amazing people that can flow in and become part of your life.

BTW beautiful words Jim, your attitude to life and your ability at eloquence to express it all are an inspiration to us all.
 
arrrggghhhhhhh mod. sorry Nikki I was only writing nice stuff ;)
 
I am OK with it. Sometimes I wish my wife would "dump" me and get on with her life. My situation is hopeless and (I know the CALS hate this) I am (that is me with ALS) a burden to her and others. I know she loves me, she is wonderful, and because I love her I want her, my kids, and my friends to just move on and get over what this disease has done.
 
tripete said:
I am OK with it. Sometimes I wish my wife would "dump" me and get on with her life. My situation is hopeless and (I know the CALS hate this) I am (that is me with ALS) a burden to her and others. I know she loves me, she is wonderful, and because I love her I want her, my kids, and my friends to just move on and get over what this disease has done.
Click to expand...

My sentiments exactly.....it is hopeless, we just need to find things we enjoy and exist because they do love us. Isolation gets easier with progression.

...Pete get ready to take a beating from the CALS nation.
 
Yep- here are my 20 lashes to you Mark and Pete! YOU ARE NOT A BURDEN! It's a thing called love! I would give anything if my " burden" as you call it, was here beside me again. Every time I could do something for him was a gift to me. I do understand why you think the way you do- you've lost so much, but please don't ever underestimate the power of love. And remember, when you want her to "get on with her life", YOU are her life. I feel like half a person without him. And now I've had a good cry for the day knowing he felt like you- and it breaks my heart. Love you guys- repeat after me- "I am not a burden." Hugs. Donna
Vince, so sorry for the loss of people you thought were friends. Forgiving those who withdrew from my hubby is something I haven't yet been able to do because they hurt my hubby. Fortunately, they were few in numbers and like others have said, people stepped up that you didn't expect to.
 
Cheerleader you are a blessing to this forum.

Vince
 
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