August, 2020
As I write this NorCal has gone biblical and not in a good way. Surrounded by wildfire with an overlay of pandemic is not my idea of the dog days of summer. And it’s hot and the air outside is unhealthy. And there’s this ALS thing. It’s times like these that the mindfulness gurus tell you to count your blessings.
Seriously.
Because I’m a team player, however, I’ll go along with the gurus. So here in no particular order are some of my my ALS journey blessings.
The Pee Bottle
When the right side of your body is about as stable as a rubber chicken, standing up just ain’t an option. And I drink a lot of water. The bottle comes to the rescue when nature screams. Like during a Zoom call where pajama bottoms aren’t the only things off camera. Of course a pee bottle needs to be prepared by rounding off the plastic knife edges around the opening lest they find their way jammed against your faucet. One of the two items indispensable to the proper operation of a pee bottle leads us to the next blessing.
My Caregivers
Someone has to hold that bottle. All kidding aside, they are all saints, especially St. Laurel and my major outside caregivers David and Linda. They wash me, clothe me, bring me ice water, blow my nose, clean my eyes, feed me, wipe my drool, and generally put up with my shit. I literally can’t live without them. They are each invaluable in transfering me to the commode wheelchair when digestion is knocking at the door. Which brings me to another blessing.
Premoistened Towelettes
Enough said.
My Tobii Dynavox I16
This puppy, my eye tracking computer, has been a real game changer. With it I’m back doing what I did pre-disease: writing stuff while sitting on my butt. Being a fully functional Windows 10 tablet I could use it to waste the rest of my days on Facebook. Instead I use this fully functional Windows 10 tablet to create this blog and enable your procrastination as you shelter in place. With the nifty wheelchair attachment I can take the tablet anywhere I want, such as outside in the evenings to the next blessing.
The Veranda
A travertine stage that steps down from the music room to the outside, it is where I perch to survey our vast backyard estate. All 1,000 square feet of it. When it’s dark I can bring out the tablet, fire up the kindle app, and entertain myself with David Mitchell’s latest or Liu Cixin’s science fiction. Mostly it is the place to be with St. Laurel as we recount the events of today and strategize the events of tomorrow. Often it is the place where we just sit and listen to our garden waterfalls as I continue to be blessed with the smile that first greeted me over 40 years ago.
Embrace The Suck 
Bob & Laurel-you are both amazing!! Most of us including me cannot imagine what you are going through. I keep offering when this COVID thing goes away, I am looking forward to playing that piano of yours.
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There is so much power in focusing on the things we can be grateful for
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So nice to have another blog from you. I look forward to hearing from you Bob and finding out what is going on since COVID does not allow us to do this in person. Once we are able, Bob and I definitely would love to get together with you and Laurel. Give her my best and please say hi to Katie too.
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How do you continue to make me laugh when I would otherwise cry? I admire and respect you. I also agree Laurel deserves sainthood. The picture captures your mood perfectly, moonshine over your estate. Makes me feel like I was there with both of you. I am blessed to share the 40 years of friendship with you both. With hope, love and faith. Always
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Always in awe of everything you are doing, and all those “helpers” of yours! I’m finding sheltering in place is a great time to enjoy so many of my Irish books that I haven’t been able to get to, including those of Brendan Behan, Patrick Kavanagh, and Flann O’Brien. Bob, there’s an interesting Youtube four-segments of 15 minutes each on those writers called “Three Irish Writers.” You might find it of interest. I did. Always a great pleasure to see a post coming in from you! Take care! Kay
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β€ St Laurel is an apt nickname!! Love it and love you.
On Fri, Aug 28, 2020 at 4:52 PM Embrace The Suck wrote:
> embrace-the-suck.blog posted: ” August, 2020 As I write this NorCal has > gone biblical and not in a good way. Surrounded by wildfire with an overlay > of pandemic is not my idea of the dog days of summer. And it’s hot and the > air outside is unhealthy. And there’s this ALS thing. It” >
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I suppose in an apocalyptic world, the existence of both a knife-edged pee bottle and a computer that translates your eye movements into prose makes sense. So few things do, right now. I’m grateful to know you, but that is only because Laurel responded to an ad for a used washing machine hundreds of years ago. As we get older, it’s easier to appreciate the value of coincidences.
But enough of the surreal – I hope your daughter is coping well with the insanity of fires and hurricanes in a pandemic. It does instill confidence to know that there is intelligence and competence where we need it right now – in FEMA.
Michelle
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π€
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Oh I love your photo on the back deck and that you keep writing and I wish you were here with us today. Iβm getting ready for the celebration of Christopher and Christina! it is our next blessing . Love you much-Marie
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Bob, My big brother Bill turned me on to EMBRACE THE SUCK. Your wit and writing technique is poignant, unique and appreciated, and I must tell you, reminding me to count my blessings and listen to the mindfulness gurus is apt and timely. Thanks for being you. You and St Laurel are so appreciated.
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What a wonderful sight to see you on your deck, enjoying the night air (albeit a bit smokey – think of camp fires), listening to the gurus and enjoying your blessings! Hugs for you and Laurel!
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Bob, you made me laugh and cry at the same time. Nice work.
Great picture too. Laurel always had an eye for a great shot.
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It is always good to read your writing and appreciate your sense of humor and inspiring outlook. Love to you and Laurel.
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Bob,
To think that I used to correct your writing. Your talent for expression was wasted on contracts.
Nelson
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Love you Bob…
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I loved this Bob. I have a clear mental image of you and Laurel on the veranda. Wishing you more peaceful times there.
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You are amazing!!! When I read your essays, i hear your voice. It comes out as clear as if we were in the same room. They are wonderful
Jan
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Dear Bob.
Just to let you know – I and here and read every word you write. Of course itΓ’ΒΒs sometimes a hard read as my ALS experiences with Nancy and her ALS return.
Keep up the good humor and your spirits and your amazing prose. (now known as a blog?). I prefer prose.
Sincerely, Michael Dewees
>
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Dear Bob,
I love the photo; the moon over the roof, the stage, the light from your laptop.
Thanks for sharing your blessings – all legit.
You’re a good man.
Easter
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Love you.
Thank you for filling my heart.
C
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OH Waldo you have always made my laugh and I am so glad Laurel shared this with me. We have SO many memories SO many pictures together that I will put together for you.
You are the best thing that Alan ever did for me π
xoxo,Sandi
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