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Best Day Ever
I've got a friend named Annette who's got a pretty awesome and amazing attitude about life. Just to give you a little taste of the kind of person Annette is… she went on a trip recently. She sent me a letter and part of the letter says, “to me, all the travels in the world could bring me no more joy than a hug or handshake, or a quiet time sitting on the porch with a dear friend.”
In my eyes, that's a wonderful way to look at the world. Annette doesn't need a whole lot. She doesn't need all the travels in the world. Sitting on the porch with a dear friend is enough. Annette visits me a couple times a week and we sit and have some quiet time together and then we ponder the big questions of life. And often it's the case that her great attitude about life rubs off on me. It happened today. That's why I'm here now, after one of the hardest days of my life, creating an episode called “Best Day Ever.” Thanks, Annette. No, really, thank you.
She told me a little story. I was only 90% listening, so I can't remember all the details, but it went something like this. There was a dad and there's a child who's like five or six years old and the child gets a terminal diagnosis, maybe six months to live with cancer of some kind. And I don't remember how it goes, but the dad says we're gonna make this the best day ever. I missed a part of the story. But basically the dad who's about to lose his child is gonna let go of his grief. He's gonna put all that aside and he's gonna make this the best day ever. And Annette said, “we could all learn from that. Put aside all our grumbling and make this the best day ever.” What if today were the best day ever?
It reminds me of a piece I've been wanting to write for a while called “The Happiest Guy in Ohio.” The essence of that story is basically all it requires to be the happiest guy in Ohio is a shift in my attitude, a shift of my thinking. Here I am living with severe chronic illness, waking up wanting to die, but I'm the happiest guy in Ohio. It's gonna take tremendous discipline and lots of practice… and usually I don't think I'm cut out for it. Usually in my own mind, I'm more cut out for the prize of the guy with the most difficult life in Ohio or the most grieving guy in Ohio. But it makes me smile, just thinking about the possibility of being the happiest guy in Ohio, all with just a switch of my thinking.
Today's been a really hard day. I woke up moaning with discomfort…loud audible moans, moans of suffering, moans of illness, moans of loneliness, moans of “how am I going to face this day.” My symptoms today have been scary and severe and I have no idea how long they're gonna last or if they're ever gonna go away — deep weakness in my core, a sick feeling all over my body, a cold kind of clammy feeling on my skin, weakness in my legs and my arms, aching weakness in my belly and a loud, overbearing whistling in my ears and I'm scared. I'm scared that this is my new normal once again.
I had a few better days last week. My daughter was here to visit with her fiancé Andy and I had a few better days. By the way, I hesitate to even call them “better” days for fear of what you might think a “better” day is. My bar of better days has gotten pretty low compared to a year ago. But I was having a few better days and I got to spend some time with my beloved daughter Hallie.
We played “Risk.” Andy, Hallie and I played Risk and it was fun. I love that game. I hadn't played since like 1980. It’s a cool game of world conquering. I was winning and then they teamed up on me and brought me down. We actually didn't finish the game. Risk is a many, many hours long game and we didn't finish.
And then Hallie left and I crashed. The last three days have been kind of hellish. It's so incredibly difficult living in this body. It's such a brutal illness. It has no mercy. Every night when I write down my food for the next day, I write a few words about how my day was today. And for weeks, at the first part of this year, over and over again, I was writing “hardest day ever,” “worst day ever.” I was experiencing decline after decline. And I was writing it down every night, “worst day ever,” “hardest day ever.” It kept getting harder.
I know that gratitude and peace and happiness and contentment and acceptance are just a thought away. But I've got this crunched up, tightened up, exhausted brain that’s so stuck on grief and fear and illness and loss. Focusing on the illness comes so much more naturally than looking for the good and focusing on all that I have. It's gonna take a lot of letting go to make this the best day ever, to see it that way.
Annette, how could this possibly be the best day ever with this rain, this damp air, this ringing in my ears, this pain in my gut? How could this be the best day ever? But I sat quietly with a friend on the porch today and we connected in an imperfect way and maybe that’s enough.
And before Annette came over, my friend Christie came over and sat by my bedside and held my hand and gave me a beautiful gift. She created this tribute book to honor my 25 years of work at the Unitarian Universalist Church of Kent, complete with photographs and a beautiful tribute that she wrote. I laid in the bed on my belly with labored breathing and I cried a couple of times and she held me and we talked about the good old times at the church. We had some good days back then. Man, I miss it.
I gotta admit, it's really hard for me to call this the “best day ever.” It's been brutal. It's been bru-fuckin’-tal. I asked Annette, I said, “Annette, how do you make this the best day ever? How do I change my attitude?” And she said, “You appreciate the garden, appreciate the rhododendrons, appreciate the rain, how happy the garden is receiving the rain today, appreciate this moment sitting here with a friend.”
I realize that the “best day ever” is kind of a hyperbole. I'm not looking for the best day ever. I'm looking for some peace, some contentment. Really, I'm just looking for some relief from this physical discomfort. It's so taxing. It's so exhausting.
That was another thing Annette said on the porch. She acknowledged the fact that I’m grieving. I'm grieving the loss of my old life. I've been doing a lot of grieving for a while now. And she said “at some point, you've got to start practicing embracing your life now. And maybe you can do both of those things at the same time — grieve the things that you've lost and embrace your life now at the same time.” It's so hard to embrace this life of discomfort, of suffering — physical discomfort. But no matter how badly I want it to go away, this is what I get. This is my reality. I've said it many times before. I'm just so impressed with how satisfied Annette is with the small things.
I always liked the big things, the big exciting things — being on a stage, getting lots of attention, having intense romantic love relationships, creating amazing projects and doing amazing things, landscaping the entire backyard over the course of a summer, getting everything done on my to do list, traveling to Kauai, traveling to Thailand. I'm less familiar with the satisfaction of sitting quietly with a friend on the porch like I got to do today.
But I'm grateful. I'm grateful ME/CFS had been the best thing that ever happened to me (lol) and this has been the best day ever. I got to sit on the porch with a friend.
Oh, I'm turning my vegetable garden into a wildflower garden and I planted a bunch of sunflowers and Ohio wildflowers and some brussels sprouts. Brussels sprouts have never done well in my garden, but I'm determined to make it happen. I love brussels sprouts. I loooove brussels sprouts. Thank you God for the brussels sprouts.
Anyway, I think that may be all I got for you today. Best day ever. I hope you'll go and have the best day ever. Or if not the best day ever maybe just a good enough day. Maybe that's what today's been. It's been a good enough day. I’ll write my gratitude list of 10 things tonight. I didn't hurt anyone today. I didn't act out today in any of my addictions. I'm truly blessed. I'm blessed with support and love.
My daughter's getting married next month. I'm hopefully gonna be at the wedding, giving the welcome and the blessing before the meal. Hopefully walking her down the aisle in some fashion. It's gonna be a beautiful day. It's gonna be a beautiful day. She's found a beautiful man to spend her life with. I'm so happy.
And I appreciate you listening today. I'm really glad to connect with you. Tell me what's getting in the way of you having the best day ever today. You can share it in the comments. Anyway, I'm gonna leave you with a little bit of rain that was recorded in my backyard. It was a rainy day in Ohio today.
Hey, enjoy living in that body of yours today. If you can go on a walk for me. Go on a bike ride. Go on a run and love every single minute of it. Seriously, come on. Come on! Love every single minute of it — of that walk, of that bike ride. All right, I care about you. I appreciate you. And I'll see you next time. Bye bye.
Best Day Ever