I think I complain too much. I know for some people I do. Even my daughter, Kate, on a regular basis while visiting me will ask that we change the subject so we don't have to talk about what I am going through, what the latest frustration is. It's easy for me to understand why people would get tired of hearing me talk about toilet troubles, dietary dilemmas, financial frustrations, and the general exhaustion and struggle of ALS.
Here's the problem. This blog is intended to tell the story of what it has been, or what it is like, for me to live with ALS. It is intended as a place for me to share my experiences with people who know me and don't know me, people who know about ALS and don't know about ALS. I started it as a cathartic, a way of releasing some of the pain and frustration of my daily existence. Given how hard that daily existence is becoming, there seems to be more and more to complain about, an increasingly large pool of negative experiences. It's getting hard to find the rose in amongst the thorns.
It's also the tediousness of this disease. There are only so many times I can talk about how tired I am, or how it is getting increasingly difficult to transfer into bed, or frustrating it is to keep my home clean. There's a limit to the number of ways I can tell the story of living with ALS. After that, it becomes repetitive. I've already been told that my blog repeats itself.
I guess the truth is that every situation, when drawn out long enough, goes from being a crisis to being normal, boring, tedious. Every situation must be seen though the lens of "urgent" and "important". These days ALS is certainly important in my life, but there is no sense of urgency. I'm not likely to die this week, or this month, perhaps not even this year. So there is nothing dramatic. It's just the never ending grind of a little bit more each day, and me complaining about it. No matter how much you care about me, ultimately that gets boring, a bit stale.
Hi Richard, I am the one who commented awhile back about my sister who died from ALS. I say that Kate is entitled to her feelings, but she is not realizing that you are going to die sooner than anyone expected & she should try to tolerate your 'complaining'. At least you are willing to talk about it & deal with it as best you can. My sister would not do that AT ALL! How I would have been able to help her so much more. I would gladly listen to you as I have some idea of how you must be feeling. I see my sister in you when you write & I am so grateful to you for allowing me to read what I could not know about her. Shame on anyone who tells you what to write! It's your blog, you do what you see fit! They have no idea what it's like to be you! When you are no longer able to write what you feel, they will be coming back to your blog,rereading it, wishing you could still write.These people should be cherishing the time spent with you. I watched my sister die from this cruel disease and saw how it took away her mind with the FTD. You are a gifted writer, still have your zest for life. So very different from her. Write on!
ReplyDeleteI like your blog just the way it is. It's honest and real.
ReplyDeleteI don't think you complain enough. I think you temper your complaints from time to time because you realize how hard it is for people to read and you don't want to look like a complainer. They can't imagine how much harder it is to live it than talk about it.
ReplyDeleteYep. I do that a lot. The unvarnished reality of my life with ALS would look, well, not so good.
DeleteYour blog, your words. I think sometimes people forget that (generally) blogs are privately owned personal writing, not entertainment for the reader. In your case, you blog daily about your life with ALS, says that right up there in your blog description.
ReplyDeleteFolks who don't like it can read something else, and you don't owe them anything.
As Tara noted above, it's honest and real.
Yeah, but I don't like the idea of becoming repetitive or boring. Although I am compelled to say that much of our life with ALS is both.
ReplyDeleteIf you don't want to be too boring, I understand Blogger tolerates some amount of adult content if your blog is labeled with an adult content warning ;)
ReplyDeleteI'll tell you what, Elizabeth, how about you start? Just remember, my children, adults all, read this blog now and again.
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