Isolation. Why friends abandon us. The meaning of courage.

Up to now, I've always been curious why people would say 'you're so brave' facing ALS. It just didn't make sense to me. After all, we're just doing what we have to do. Friends and family have abandoned me. Sometimes, ALS will even destroy families. I've seen more than one spouse leave a PALS. Why? People can't relate to ALS. 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 only 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 in my life. So we left, pushing her wheelchair in front of everyone. That evening, we erased them all from our speed-dial. 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. And our visits were short--what do you say or do with a man who is unresponsive? I feel guilty. But I guess guilt is not a powerful enough motivator. On the plus side, 'strangers' like us PALS and CALS on this forum 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. Now I finally understand what people mean when they say PALS and CALS are 'so brave.' It takes great courage to face death and not panic. We are definitely courageous. Indeed, we are family.

Comments

MaxEidswick's picture

>Indeed, we are family.

that we are :-)

wcorbett@corbettins.com's picture

Your post really hit me at home. I was diagnosed with diabetes when I was eight. It seemed that no kid wanted to hang out with me because I was different. My aunt was diagnosed with ALS a few weeks ago. They say she is late in her disease. She supposedly has had it for a few years now without seeing doctors about it. I dont know what I can do for her. I will never leave her side and will fight with everything I can to make anything for her better or easier. The problem is that she has given up and that is what is scaring me the MOST. She is isolating herself. I dont know what I can do or if I can do anything. But I will

sisterpain's picture

So nicely said Atsugy! I am sure everyone can relate to that. It is absolutely some food for thoughts!!Thanks for sharing your thoughts with us

scaredwifetx's picture

We are all very lucky to have you on this forum. You are honoring your wife each and everyday by helping us. Your dedication is a testament to how amazing we can be and how true love has no boundaries. I want to make sure that moving forward in my life that when I see someone in need or that suffers with any disease that I remember how alone they may feel. A act of kindness can go a long way to help someone in need. Thank you for all you do. You are truly inspiration for all.

dorothyann's picture

Thanks Atsugi - I think what's helped my family and close friends stay connected to me is that most of them have read the wonderful books and tapes of Elizabeth Kubler Ross on DEATH and DYING. I had read one years ago and been amazed at the 'new' perspective. As soon as I was diagnosed with ALS I got a few such books from the library and I have them hanging around my apartment so the words death shock some people at first, but gradually realize that we all die. It's a fact of life, not an evil secret to be hidden from.

dorothyann's picture

And her books are so much about the need for presence and compassion toward the dying who can be so much more real when they are accepted.

van1's picture

Very well said. I can relate to your message. Thanks

texastc's picture

Mike
I only just found this area of site. Good read. I am so sorry for what you and Krissy went thru. I cant imagine how that felt. I cant because we didnt experience it...well, maybe just by a very few...not noticeable. Your story makes me much more thankful for what I/we have. Our whole world became support...from friends to coworkers to family...folks came out of the woodwork, so to speak. Thank you for sharing your story, it helped me. I would help you if I could. Possibly restore a little faith in people. They are not all what you saw.
tc

SenoraG's picture

I found this hit home as well. My husband was diagnosed just a month ago. We work daily to accept this disease and what it will bring in our lives. We told our family in person visitng every one. It was emotional and exhausting. Since then we have heard nothing. It hurts me, but who I hurt for the most is my husband. He has no one to break down to share his feelings with but me. And i know that he needs others besides me to be able to open up too.

I worry that we have been so busy raising our family that maybe we isolated ourselves...and this is the result. We dont have friends or family to help us or be there. Maybe this is what we deserve. I dont know. So, i cant say that I blame people or my family because this is difficult and awkard topic to deal with. I just thought I'd share. Do you think that i should approach my husbands only brother to be there for him?

sleepy's picture

Wow. Good words. I am saddened at the isolation so many of you have experienced. It is not my experience yet, and I hope it's not coming, but it is reassuring to see how much support comes through from here.

BridgetStahl's picture

My husband is a remarkable man. When he was diagnosed, and it became obvious I couldn't do everything alone (still had to work to support us), his childhood friend moved in with us. He has been a godsend for the last 18 months, I don't know what I would do without his help. He has other childhood, or teen age friends (we are in our late 50's) who go out of their way to drop in and see us, or send an e-mail I can read to him.

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