Today Was a True Day

Monday, August 29th, 2016

After making my first two posts here about the health issues I’ve been experiencing, I started to examine more closely my motives and goals for this new blog. I’ve also since received some limited but varied feedback from readers.

I would like to flatter myself that I do not have many unhidden motives beyond giving an honest accounting. I’d like to think that I don’t want to be funny, unique or inspiring. I imagine that I don’t want to sadden people or make them happy or hopeful. I just want to journal this particular experience with a new level of transparency and truthfulness as a writer. So get ready to be bored. Or inspired. Or laugh or cry or not care. As long as some of it rings real and true.

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For about the sixtieth day now, I stand in front of the bathroom sink with toothbrush in shaky hand. My knees and hips wobble like cheap scaffolding. Or a salacious backup dancer. I look a little like the baby in the diaper who went viral wobbling to Beyonce.

All the single ladies… all the single ladies…

I like to think that I get extra points for keeping all of the toothpaste in my mouth or the sink and not getting any in the beard. I break out in a huge toothpasty smile when I remember my daughter Brittany’s impression of me at the karoake bar on Saturday night.

Holy crap, it’s spot on. Brittany reveals how she shows her friends what the shake of my anonymous disorder looks, when it gets aggravated. With the cool collection of a stewardess explaining how cushions will save our lives in a plane crash, she begins to wobble perfectly at the table, all while she carefully instructs how you have to “shake side to side and forward and backward at the same time”. She’s good. Really good. Not as good as me, but still.

Then I remember the joke Brittany made on the way there about an inspired tattoo that her mom should get to honor me. I laugh harder in the car at that one than I had laughed in a long while. I helped raise her, so few roam the earth with as similar a brand of weird as ours. I demand we soon plan a road trip. Just so I can laugh. I think that is perfectly reasonable.

I smile even more before I spit.

Armed with acceptable attire (both shirt and pants this time) and measurably less awful breath, I “rush” to the kitchen to finish my morning routine before our guest April arrives. 

Several minutes later, I arrive at the counter and I pop open the morning pill thingy and see today’s additional, third horse pill for epilepsy. It is the new one we’ve been titrating upward for a week. We cannot tell if it is helping yet. The symptoms are so varied and irregular that we try to compare hours to hours, days to days and weeks to weeks. It still feels like apples and oranges.

Nothing yet has been able to stop my seizures as effectively and demonstrably as the high CBD cannabis. But it remains one of our biggest expenses, as Kaiser does not recognize it within their formulary. Too bad. Then it would cost us just a five dollar copay, like either of the epilepsy medicines they’ve given me, but which haven’t worked. Awesome. I just double checked and it really is already 2016, guys.

April arrives and Amy greets her at the door. As with each recent visitor, I remember the unexpected kindness and compassion of friends driving out to see me or Amy so often and I am deeply grateful.

We laugh. A lot. which is good, because she clearly promised me that we would in a text yesterday. I take that shit seriously. After hugs and catch up, we briefly bat around obligatory small talk, but are fortunately quickly bored with it. We set our minds next on solving the world’s problems, whether political, religious or social. I’m proud to say we fall only slight of the mark. We both promise to reunite soon to finish the task. She reminds me “only after your schedule is less busy”. We encourage one another and plan to follow up on a number of important things and people we’ve just discussed.

After a few wonderful hours, I follow her back to the door with a slow *click* *click* *click*, for a hug and to say goodbye. With today’s news, I make a mental note that Amy and I may need to lay off the Willy Wonka clicking cane jokes for a while. Too soon.

—

I was as excited yesterday for Amy to finally meet my friend Lish in person as I was to have April here again today. I notice how much Amy is also appreciating the visits. Then I think of all the people we’re still scheduling to come over, whether we’ve known them for decades or have only as yet spoken online.

Every day, I receive supportive emails and texts. Sometimes I feel bad we cannot see everyone at once or first.

Amy and I have felt roller coaster levels of strange emotions in the last few months. But through my irregularly scheduled angst, anger and annoyance, two things incessantly rise to the top for me: a new breed of thankfulness and humility.

Be careful praying for either of those.

But also encourage yourself that you can grow from whatever trial brings you that bittersweet pair. And I promise you will witness so much more beauty where you never could before.