Random Reaction

I wanted to record some thoughts I have been having about the heart.  I have been someone more about the head than the heart for a lot of my life. I think that is how most of us navigate early on - using our natural inclinations to help us move through life.  Since I am a "head" person, I would analyze things heavily and relied on logic to deal with life's twists and turns. This worked out pretty well, but possibly robbed life of some joy, while providing some stability to deal with challenges. After getting terrible grades one semester in college, and being told to take a semester off , I was evaluated by a team of education consultants, psychologists, etc . One of their conclusions was that I lacked "joie de vivre."  Which on the one hand, is how my low-key, analytical personality can come off. But on the other hand, what did they expect from a 19 year old in that situation? One of the things I have noticed is that some of the things that I have experienced in...

Well, I am now a couple of months out from my dear Alisa's death on Oct 8. 2024, feeling inadequate again about not writing much in this blog, which I had wanted to do, inspired by Ron's friend who died from ALS. Having a sad moment right now, just missing her, and feeling crushed by what she had to go through. I was right there with her of course, but I was focused on helping her through whatever challenges she might be having in the moment (and possibly in coming weeks), rather than really sitting with what was going on. And when I had a break from caregiving, I really needed an actual break, rather than sitting with what she was going through. Of course we grieved the losses together as they came (riding the waves of loss, as Laura so aptly put it), but for some reason, now, after she is gone, when I think about what she went through, it hits different, as the kids say. And it hits hard, to think of how excruciating it must have been for her to lose almost all the functions ...

Not sure when this was written, but probably in 2023.   Well, as with many of my journaling efforts over the years, this one has faltered. I'd like to think that I have a better excuse this time, what with working full-time and caregiving to an ALS patient, my dear Alisa. And yeah, that is a very good excuse! Certainly the best one I have ever had. It doesn't, however, take away from my desire to record what we are going through in something approaching real time. The Caring Bridge site does that to some extent, and Alisa has been great at posting there. We have been trying to practice self-compassion over the last few years, even pre-ALS, so I won't get too down on myself. I am also experiencing the care-giving process as a what I am calling an "experience in empathy," and also of compassion. I have of course been challenged by the care giving, but overall think I have been handling it well. Other than I had a recent incident of going to the hospital after I was ...

 2/11/2023: Well, as expected, I have not been back to this blog much since my last post a couple of months ago. Alisa's progression has progressed unfortunately, and her speech is really suffering. This is part of the brutality of #ALS - it just keeps taking things away from you. As one of our friends said, we have to keep "riding the waves of loss." Quite accurate, but some are worse than others. For my dear Lis, speaking is something she was good at, and always had lots of nice things to say to people, so I can't imagine how difficult it is to have her preferred form of expression curtailed so drastically, especially in the devastating drip, drip, drip fashion that it happens in #ALS. We are just over a year in from diagnosis (1/13/22), which is both hard to believe, and depressing, especially looking back at how she was a year ago, speaking reasonably well, walking well, etc. A picture came up on my phone of her and Bella up on Mt Toby right about a year ago, with...

Although I am not much of a Dylan fan - I could never get past his mediocre voice - my partner Alisa is, and this is one of her favorite songs. And it applies brutally to what has happened to her, which is that she was formally diagnosed with #ALS in January 2022, after a series of doctor visits. So this blog is going to turn into a a bit of an #ALS journal for a while, although not necessarily exclusively. We have a CaringBridge site set up so I'll not duplicate much of that. One thing that didn't make it on the CB site was my initial email to family and friends, which I do want to reproduce here as a record of how things went early on. I'm going to go back a little bit for those who haven't been part of the process early on. We noticed some speech and swallowing difficulties in the late spring early summer last year. We didn't think too much about it (but should have of course), thinking it was due to some sores in her mouth (as opposed to the cause of those sore...