Monday, 1 December 2014

Repetitive Repitition

Someone close to me recently told me she only reads my blog every once in a while because it was repetitive, that I talked about the same stuff all the time. As with all critique, I took this in and pondered it for a while, thinking about repetitiveness. In some ways, she is correct. I do cover the same themes a lot; there's not a lot else to talk about. On the other hand, I think I share my life pretty honestly, from the banal to the extraordinary.

Let's face it, the tedious death march that I am on is repetitive. There are very few "headline" days. You are never going to see something like "STOP THE PRESSES. Richard dropped his fork again only this time his hand was ever so slightly weaker than last time"; or, "HEADLINE. Richard is tired again, just like last time, just like all the time." ALS is a slow, grinding illness where you really don't want the headline days.

Think about what those headline days might be. The day I got my wheelchair was a headline day. The day I realized I would never walk again was a headline day. The day I give up my truck will be a headline day. The day I can no longer live alone in my apartment will be a headline day. Ultimately, the final headline will be the one I am not here to write. That should end the repetitiveness.

This ennui of tedium exists even in the ALS research world. So many of the headlines in the research are simply restatements of previous headlines. So much of what we learn is incremental, small, and uninteresting in and of itself. There are only so many times you can hear about genetic manipulation in mouse models before you have had all you can take.

I am trying to share my pathway. If I was really true to that goal, I would simply describe the challenge and exhaustion of each day. Now that would be really repetitive. The difficulty with tiredness, the difficulty in toileting and getting dressed, the sore arms, the irregular appetite. Of course, all of this is old news, completely lacking in stimulation or excitement.

So I am repetitive. So what? Maybe I am, maybe I am not. It might be that this life is tedious and boring, stifled with the limitations of ALS. But I have probably said that before.


  1. Richard, I only know you because of your blog but I don't feel it is too repetitive. It is honest . The fact is you have continued to live despite a bad diagnosis. Your life is still full of adventures, you choose to not sit still waiting to die. You have done more traveling since your diagnosis than most will do in a lifetime. Your life is anything but boring.

  2. I wrote a message Rick and then it disappeared. Rats. you are a wonderful example of courage and the will to carry on. You are an example to all of us on how to deal with tragedy and hardship. I think of you as a baby and a child, how healthy you were and it was a joy to be your mom. It was a wonderful experience to be the mom to five amazing boys. I love you all with all my heart.

  3. I don't think your blog is repetitive. You are experiencing life with ALS. Just like anyone who is sharing their story with others, you may explore common themes as you chart this path that is so much more than a death march. Thank you for doing it.