I survived DC, and I will post about that awesome experience probably over the weekend. But right now I am so exhausted (in a good way) that I feel as if I have “jet lag”. And I want to catch up on some stuff that had been laid aside, not only for the past three days, but also in the week or so prior to my trip, in favor of preparing mentally and physically (getting clothes ready, for instance) for no only DC but the Ride for Life the week before.
A couple of ugly monsters reared their heads right before and after my trip. The first was Joe Gaines, whose comment in my caringbridge guestbook, I will try to recreate. I deleted it the moment I saw it. It was signed Joe Gaines with an email email@example.com. I’ve tried to email him but, not surprisingly, he didn’t reply. Almost verbatim, the majority of it was like this “I find it discouraging that you have such anger toward your family and friends. If I were one of your friends, I would rethink the relationship. The fact that you have ALS is tragic but people have lives. You are just trying to get other people to feel sorry for you and you have a lot of nerve asking for money.” He went on to say that he has been where I am now and he understood that people couldn’t be there for him, or something like that. Well it sounded hauntingly like an email I got from someone about a year ago, so maybe Joe Gaines is a pen name, or maybe a random troll.
All I know is that I can’t write about my experience with ALS and not include the normal emotions like anger and depression that go along with it. And many people have written to me asking if I need money or anything, so I thought providing a link to my paypal account would be helpful. If anyone is offended, he/she doesn’t have to read this. So one bad posting out of many positives isn’t bad. So many people wrote to me telling me to continue posting to my blogs, emotions and all, to let one disgruntled sicko spoil the fun.
I do feel that this is such a two-way mirror of sorts, though. Everybody can see me, But I can’t see them. I actually had people come up to me in DC and say “So you’re Fern. I read your blog.” And a few people told me I inspire them. So, I will keep going. And I know that some people who are not in my life anymore read this. Maybe they really care or maybe it’s a way to keep up with me without actually having to deal with me or ALS. So be it.
I also came home to a crisis. You see, with this Consumer-Directed Home Care, it is up to me to fax over the time sheets to Concepts every Wednesday. So before I left, I made sure to fax over the time sheets for the May 18 payroll. Well there is a line for my signature, and I forgot to sign. Had I been home, this would not have been a problem; Concepts called on Monday and left a phone message informing me of the error and telling me that I could sign the sheets and fax them back by Wednesday at 3 to make payroll. Well, guess what. I got the message when I returned last night. So I called Concepts this morning and it is too late, so my aides have to wait for the following payday, which is June 1. I told them that I will front them money for any urgent bills. From now on, we are all going to double-check each other and make sure everything is signed and complete before we fax over the time sheets. My fault, what can I say? I won’t do that again!
Until 2004, I was an independent and active woman -- a former airline sales exec and then a high school educator. Then my body kept betraying me. I was finally diagnosed with ALS/Lou Gehrig's Disease -- confined to a wheelchair and unable to speak. With life at a slower pace, I learned to live a more conscious and mindful life -- buying, eating and other choices. I listen instead of talking, and I observe instead of running and rushing.
Thursday, May 17, 2007
To write with emotion or not?
Posted by Fern Ellen Cohen at 6:50 PM
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I have started to write to you re the Joe Gaines thing on several occasions in the last day or two and I was so angry in my response that I deleted it on the grounds that I would cause more harm than good. But ... you seem to have come to my opinion on your own. Good! Keep on blogging your thoughts, you have every right to express yourself and should not be intimidated to write with emotion by trolls or anyone else.
FYI I am walking for ALS this weekend.
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