How do they do it?

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Moderator emeritus
Sep 17, 2006
Learn about ALS
New England
I thought it might be interesting to get a discussion going based upon this article in the Boston Globe.

From his treatment of survivors of physical trauma, Dr. Richard F. Mollica has found that both people living with devastating illness and people recovering from devastating events have the same coping styles. The team at Harvard University found that people recovering from traumatic events such as having been captured and tortured share many of the same reactions as those living with devastating illness. And those living with fatal illnesses can learn how to cope by taking note of how traumatic victims heal emotionally.

The coping lessons will sound familiar to many of us. The refugees rely on altruism, work, and spirituality to deal with what has happened. The article says that terminally ill patients in their study have similar coping skills. I hope some of you will have the time to read the article and post some of your thoughts. For me, it confirmed my suspicions that there is a method that people use to cope with becoming a PAL or CAL or a potential PAL or CAL.
Coping and Living With ALS

Cindy, This was an interesting article. Thank you!

Today Timothy's hospice coucelor came. She talked with Timothy, one my brother's Dale and my Mom. She is coming to see me alone.(?) While she was there she brought back to my memory of a man here in the same town (mobile, AL) with ALS for 25 years. He is 42 now. I had read about him before Tim was diagnosed.

He had written a book "Living" with it not Dying of it" it is on his website. When I read it, it in alot of ways it seems like Timothy, Please read. I think you will find this interesting. By the way, he types with his toes!

Very Inspirational!

Cindy--A good article --thanks. Maybe it explains my recent interest in watching war movies and reading books about POWs and victims of ethnic seemed odd to me as I always avoided anything about war, but since I have been so traumatized being a CALs and witnessing my husbands suffering, I have been fascinated by it. I guess I was learning something! Thinking about all the suffering and violence through out the world helps comfort me when I compare our is tough but we are still VERY fortunate and we have so much to be thankful for.
Beth (CALS to husband Shannon, diagnoseded 8/04 at age 40)
You are right on both counts,IMO, Beth. Learning how others managed helps and focusing on the things that we can be grateful for helps. At least that's how I see it. Regards, Cindy
Hi Cindy,

Thanks for the article. I too found it interesting. The one line, "You will get better." That one sentence changes the whole therapy. The person goes from extreme hopelessness to feeling very optimistic. A positive prognosis is the beginning of a cure.", gave me pause. This is, of course, what sets the DX ALS apart from the rest of the diseases. But none of us gets a guarantee of days or years either. I lost my youngest sister to a car accident, hit by a young "high" driver. Her arota was cut and it was a pretty instant death. She was 22 and truely my best friend. After losing almost 6 years (lost a Masters Degree because I stopped going and it was too late to return - I needed 8 elective hours) I realized I could not do that again. I also met a man who died in a car accident 2 weeks later. He had ALS for about 20+ years and was working as a school administrator when he died.

My oldest sister died after 12 years of living with cancer. I told her I needed to finish my next degree - got a different Masters and went on - before she died. I finished it Dec 16 she died the 31st. I believe there is no point spending our time grieving or being angry for long because we have the time we have until we run out. So I thought the article was good and helpful. When I got the first DX of ALS, I looked up the "worse diseases" to get, on the internet. ALS was not even mentioned and the ones that were - I wish I didn't know about them. So with that idea I remain very hopeful.

My two cents, Peg
You are right, Peg. There are no guarantees on how long we have. I'm not saying that adversity is a good thing but when I hear a story such as yours-coping and getting on in spite of losing numerous loved ones-I start to believe that the rough spots in life somehow temper us and smooth us out.

I remember whining incessantly once in my life because of a broken arm. I was young and had nothing bad to compare it against. But all my complaining didn't heal it any sooner and just made me miserable, along with everyone else around me.:-D
LOL Cindy. Peg
Two Cents well spent


To have lost your youngest sister and oldest sister must have been so sad for you. It sounds like you were close to BOTH of them. What a mystery how life unfolds. Why some events in some people's lives can sink them and other people's lives continue to rise up to keep breathing and they keep moving.

The spirituality of each person in the article you shared Cindy was a part of it. Could another part also be that each was able to share what happened in the perspective as they saw it AND that they were not only heard... what they shared was taken seriously.

This forum has helped me cope with what is happening in my body. Not that I'm getting better as much as I'm in a community of people who are on the same path, different places on the path, even possibly forging ahead through unexplored terrain, none the less, the path of MND's. This gives me hope and gratefulness for this day, this moment. Being the independent person I am is now weaving ~~~ into interdependence.

Thank you for sharing about your sisters Peg.

the independent person I am is now weaving ~~~ into interdependence.

I love that thought! We stress independence in this society and rightly so. It is a real shot of self esteem to be able to do for yourself. Just like the old pilgrims and pioneers.
But at the end of the day, if we don't have each other, we are empty souls indeed. Interdependence is the way to go! Good thinking, Frizzel! Cindy
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