I am a PALS (a person with ALS), and I’m afraid to commit to blogging. However, to try to keep up with communication with so many dear loved ones, both past and present, has become a challenge. And…I REFUSE to go to a Caring-Bridge Site. That can come a lot later, I hope. When I switch over to that type of site, then you can take that as a signal that the end is near, either of Bruce or the world as you know it, HA!
So I’ve decided to try blogging. It seems to me that it might be a good way for all of us to stay in touch and in many cases, to meet each other. Some of you will know me from a musical past or present while others will know me from an international past. Still others will know me from a present that is so grounded in Minneapolis, MN, the University of St. Thomas and 15 years of Stateside experiences that have become inexorably intertwined with one another. Anyway, what I am hoping is that as you log into this blog and read (and hopefully leave a comment or two for me or others to see), you will also begin to meet each other. My friends and family are incredible, raucous, messy and just wonderful human beings! It is really time for you all to meet.
What I am hoping is that this can become a dialogue. I’ve called it the Dis Ease Diary. While I think that my diagnosis of ALS really focuses me on how we do health, sickness, ease and dis ease in this country (and really, the Western world in general), I also think it is bigger than just a commentary on health. As we consider those things that seem at the time to be interruptions to our lives (dissing the ease so to speak), many will have nothing to do with ALS. Instead, I see possibilities of this blog helping to connect some of the dots of what it might mean to be human in the early 21st Century. Or we might just get in a few laughs and cries.
So take this in a lot of ways. We can keep up with each other, we can talk about life, the Cubs or fashion, or maybe we can see if there is a little room for human consideration of being human. If you don’t want to share your comment with the D E Diary, then feel free to email me. The idea here is that, even as the motor neurons come unconnected, the love, life, light and joy of all of us, even in the darkest times, becomes unified. And I admit this is very selfish, for I find that in the notes, letters, cards, and just chance meetings, since my diagnosis, I am strengthened and energized for the days ahead. That is what love can do for us.
Yours in ALS,