Meg's point
I understand Meg's comments. Good gosh-- this is a terrible disease. I'm not suffering with ALS; I am caring for my mother. Just 8 months ago my cute mom was driving around town in her zippy red car. She was an elementary school secretary, and a fun grandma. When I first came to this forum she had a limp and and was unsteady on her feet. Now she can barely eat with her gnarled hands and she's confined to a wheelchair for most of the day. Her speech is getting harder to understand. It's heartbreaking to see her suffer and shocking to see how fast this disease is taking her. Mom prefers to avoid forums or suport groups. Like Omar stated, she doesn't need a reminder of her disease. She wants to distract herself from the reality of her life. That's how she copes.
Others feel better by helping- through fund raising activities, or even sending reassuring emails to people questioning their own health. This forum has helped and comforted so many people...people diagnosed with ALS, caretakers and family members(me), and people wondering about their own strange illnesses. It's a wonderful, visible resource open to anyone with a computer and internet capabilities. You're going to get your share of different people from all walks of life. You're not going to agree with everybody. The open environment that it is will expose us to some wonderful, helpful people and even the occasional mentally ill person. But that's life, isn't it? My church like most, is open to all. I remember a Sunday when a young woman walked in and asked to speak to our congregation. She proceeded to tell us how she grew up in the neighborhood... and now she's writing the third bible to follow up the New Testament. After sharing some of her "insights" she blew us a kiss and left the church. I still go to church.
This website was cleverly designed with an area for General ALS Discussion-- perfect for people asking questions about the disease, trying to get a diagnosis. And perfect for people that want to answer them. Going back to how we all cope differently with a terminal illness, some find it comforting to help others. There's an area for PALS, and one for Caregivers. This enables folks to spend time where they feel most comfortable. Of course, it's an imperfect world and as such you have to expect imperfection at times. But I like this little helpful family. Meg reminds us, in her not so subtle way, to "quit whining and live". Maybe that's just the kind of help some people need. A terminal illness will change your outlook on life to be sure. My mom and I have had some great discussions. Dying will get you to thinking-- I know that I'll try never to take anything for granted. Life is precious and many of you have help me believe that.
Peace...
Shannon
