Friday 5 May 2017

Silver Linings And Clouds

It has been suggested to me of late, more than once, that perhaps I have been writing a bit much, perhaps a bit too graphically, about some of my bodily functions. I get it. This is messy, yucky stuff. Who wants to hear about that. Except, of course, that messy, yucky stuff is what living with ALS is all about these days, given that my core and arms are losing or have lost so much. It is the core muscles that control or aide in so many of those bodily functions.

It has also been suggested, more than once, that I might write a bit more about some of the good things going on in my life. There are, after all, so many good things happening for me in terms of support, family, friends, travel and life in general. This I can understand. It falls under the category of "nobody likes a crybaby" or "laugh and the world laughs with you."

The problem is that my life is largely dominated by difficulty these days. Even when nice things happen, they so often happen in the midst of challenge. It is in my nature to more note the challenge than the ease, more note those difficult things rather than the nice things. It's just who I am. As both my daughter and my brother have said of me, I can find a cloud for every silver lining.

Yesterday was a great example of this. Without going into the kind of gory detail which constitutes too much information for so many of you, I spent three hours on my commode chair trying to pass a particularly hard stool. Three hours, trying to poop. The one blessing in all of that difficulty is that my commode chair has wheels. At least I wasn't stuck on the toilet. I could move out of the bathroom and sit at my table, waiting for action to take place, then do a quick roll back to the toilet as needed.

The other nice thing that happened was that Kate came over to visit. Unfortunately her initial arrival took place in the midst of my three hour tour. She took that moment, and wisely so, to head over to the mall to do some shopping. She came back when I sent her the all clear. Then she did what I enjoy most, sat and chatted for a bit, did some sewing for a bit, tidied a few things up. As she left, she took my GPS and Back Up Camera, along with my truck, so Phil could put it together for me this weekend.

You see, there are good things that happen to me. So often, though, they seem wrapped in difficulty. There are silver linings. I just happen to have a cloud for every one.

9 comments:

  1. It's your blog- you get to post what you want.

    I feel your posts are honest. I think that's important. This is not a disease that's tidy, nor should those who suffer with it have to protect others from the reality. You are doing a favour to many to let them know that what they are experiencing is not unusual- you are providing practical and experiential info on what to possibly expect. Being told to lay a veneer of false cheer on top of your experience is disrespectful and dismissive of the very real suffering you are experiencing. No one with ALS should be told how to feel or how to present their experiences.

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  2. I agree with the other commenter, and since it is your blog and your life, I hope you feel free to write what you want. As someone who is newly diagnosed with ALS, I want to know what lies ahead, and you have been super helpful with that. I don't want it all sugar-coated; if I want inspiration, I can look for it elsewhere. Please keep writing about real stuff, Richard, even though it might make some people uncomfortable.

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  3. P.S. I spent a lovely time yesterday in a rented beach condo trying to get off the toilet. Most toilets are very low, and with my left leg being essentially nonfunctional, AND no grab bar available, I couldn't get up. My solution was to drop down to the floor and crawl to a low couch that I could climb up on with difficulty. Sorry to the sensitive peeps if that's too graphic, but it's a piece of what ALS looks like.

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    1. Grace, please forgive me. Don't hate me, but I laughed a bit when I read this. Not at you, at me. I have had to do something very similar, leaving skid marks along the way. Once I got to my sling and wheelchair, I got the Swiffer and cleaned up. You have to laugh at some of this insanity, or you will truly go insane. Even now, as I respond, I smile, at my own expense. Come on! It's funny!

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    2. Richard, you are right, it is funny. I was a little panicked at first, but once I got on the floor safely, the only thing hurt was my vanity. The good news was that there were no skid marks.

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  4. It's your reality.... It true and honest... Keep on.

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  5. Well, to state the obvious, it's your blog. Having stated that and being a dad myself i can certainly understand that your children might feel a little uneasy (then again maybe they're not the ones finding it objectionable). However, if your intent is to tell what life with als really is like, then i think you really don't have much of a choice. Otherwise it just becomes literary entertainment.

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  6. Others have already said it but I feel strongly about this so must join in-your blog, your content. It is your job to write your life, as you see it, NOT to write to make others feel better. No one is being dragged here to read it. You do you Richard, with all the pooh! xo

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  7. Anyone who doesn't want to read about what is going on with you should just stop reading what you write. This blog is for and about your journey. You should feel free to write whatever you feel like writing about regardless. Sending love and supporting hugs. ♥

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