08 August 2023


"I've put your 9:30 a.m. pills right here on the counter with a note to remind you when you can eat. Don't take the pills until your alarm goes off, okay?"

"You have to go to work today???"

"Yes, I have to go to work today. So I'm getting your pills ready for you. And here are the times you can eat."

"I thought you had the day off."

"I wish I did. I'll be back home as fast as I can."

You've heard of Christmas in July?

"...as fast as I can" didn't happen for 12 hours. At the office where I work, we played Fourth Quarter in August. I can't complain because it means I can make my house payment. We can have food on our table. And yet, it is SO hard to be SO busy SO soon. I'm accustomed to being crazy busy throughout October, November and December. Trying to leave home for a few hours these days sometimes feels a bit like what a new mom must experience when she has to leave a newborn behind.

It's really hard to leave Lizard home alone. 3.5 years of being Safer at Home is magnifying my current emotions. Well, that and the rapid progression of Parkinson's...

How did I survive decades of these crazy hours pre-pandemic???

Oh, that's right. We were weekend warriors. We lived for weekends. We lived on weekends. It was okay to be working stiffs during the week because we knew the weekend would bring us back to life.

Now the week and the weekend are relatively the same as well as somewhat boring compared to the life we used to live. I was never much of a homebody until Lizard's first surgery. Then came the pandemic, and we had no choice but to become full-time homebodies.

I can work on my garden and/or landscaping during the summer - when it's not too hot. I hope to be able to return to quilting at least on weekends the other three seasons. I can do many things I want to do... at home.

Yet something is missing. Something I probably won't get back. Not in this lifetime.

I start feeling a tad sorry for myself, then I have to yank myself back into reality and try to imagine how this must feel for Lizard.

I'm still able to explore fiber and electronic adventures. Lizard's daily challenge is to keep a positive attitude when he's lost nearly every thing he loves. His adventures are limited to navigating life without a babysitter, which he despises. Both the need for a caretaker and the act of necessary supervision altogether. He is disgusted he can't on a whim take off on his bike for a 70-mile ride. He abhors being confined to low-altitude and four walls. He resents not being able to snack whenever he gets the urge. Not being able to speak clearly or remember important things causes him endless distress. He detests not being able to work the computer, the phone or remote controls now. And he utterly loathes having to take approximately 27 different medications and supplements every single day.

"Why do I have to take this pill?"

"That one helps calm your nerves."

"I thought that's what the yellow one was for. Why do I have to take two that do the same thing?"

"This one helps control your tremors."

"That's what the levo... that's what the carbi... that's what the dopey one is supposed to do! Why do I have to take all these?!? Why do I have to take so many pills?"

Unfortunately, that conversation, or others very similar, is a routine slice of our weekly routine these days, as is the "You have to go to the office today?" conversation. As are the five-time daily alarms to remind us it's time to take a pill or pills, the yellow sticky tabs all over the house to remind us of tasks such as turning off the water or lights, and making sure the cane is always nearby. Quarterly visits to the endocrinologist and neurologist. Semi-annual blood draws and primary care checkups. Monthly notifications of prescriptions ready to be picked up. Near-daily discovery of a new loss of ability to do something that used to be easy or automatic.

Humor, we are learning, is the key to survival. Dreaming new (achievable) dreams, discovering new hobbies, literally walking new paths. Enjoying quiet time together. Tender touching. Holding hands. Eye contact. Smiles.

We may have pain, but we can turn that pain upside down like a frown into a smile and make it into a family joke. Laughter, after all, is the very best medicine. We can help each other be stronger. We can encourage each other through hard times. We can cheer each other's success.

Together we are stronger. It is not an easy road. But, together, we can tackle just about anything. Together, we can make it. Together, we WILL make it.


  1. Much love, and many hugs, to you both.

  2. Oh wow - that is a lot. It is such a change and I bet it is so hard to one, live with the changes, and grieve that the changes have to happen at the same time. Sending you love and prayers.


Dusty words lying under carpets,
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locked inside, hidden deep from view?
You can talk to me... (Stevie Nicks)

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