I try to post about once a week. Some weeks, though, there’s not much to share as far as medical updates. But here’s a few other tidbits.

16 More Sleeps To Go

I’m in “limbo land” just waiting for surgery on 2/4/21.

Each night before I go to bed, I tell my wife, “_____ more sleeps to go.” (At first, the countdown until surgery was just too far away to count, so I would count down the days until we pack up and leave. But now surgery is close enough to feel manageable.)

I’m grateful that my pain isn’t the severe, stabbing pain that some people get. And I don’t have trouble with vomiting that prevents some people from eating anything at all.

Still, my pain is a solid 5-6 on a scale of 1-10. It’s ever-present enough that waiting a little over 2 weeks for surgery feels like an eternity. I know that once the surgery is done, this long wait will be a distant memory though.

Coffee, Chips and Water

I’ve had a couple of days recently where I was able to stay upright most of the day. The strategy there has been to eat as little as possible. So I sip on coffee and eat a few Lays Sour Cream & Onion chips. Weird, right?

Then I pack on the calories before bed with a 50/50 mixture of Kate Farms and Nestle Compleat nutritional supplement drinks.

As a side note, I had posted a few times about Nestle Compleat being cheaper than Kate Farms. Not quite true. At least, not until the insurance deductible kicks in. Found that out when we got a bill that was 4x higher than expected. And with the new calendar year, deductibles have all reset. Wishing I had placed that second order of Nestle Compleat before 12/31/20!

Creating Space

“No” has become a powerful, healing word. Saying “no” to one thing allows me to say “yes” to something else.

I’ve realized that leading up to surgery, and for the weeks following, I need to create more margin so that I can give myself space to heal mentally, emotionally and spiritually.

It sounds dramatic, but what I’ve been through the last 10 years is a chronic form of traumatic stress. My midwest American Puritan work-ethic background wants to deny that sometimes. There’s an unspoken “grin and bear it” rule that we stuff pain down, minimize it, give it to Jesus, or laugh it off. We sure don’t talk about it!

But there’s freedom in labelling the damn thing and letting it be real. Only in the fresh air and light of day can it start to heal.

Saying No To Work

I can be a pretty driven person when it comes to my work. I’ve had to be pretty determined in order to keep projects moving even when I don’t feel good. So it was hard, but freeing, for me to ease off and say no to projects for about 6 weeks.

There’s a loss of income that stings a bit — no safety net when you’re self-employed — but it’s worth it to have some weight lifted. I know how incredibly lucky I am to have my wife’s income and our emergency savings to lean on in times like this. Not everyone is so fortunate.

Saying No To Stress

I’ve also had to say no to relational stress. I didn’t always have the courage to speak up for my needs. But as I’ve gotten older, and with the help of some wonderful counselors, I’ve found agency and boundaries. So for a time leading up to and following my surgery, I’ve asked people to hold back from sharing the burdens in their own lives.

It might sound selfish and uncaring to do that. But I feel like sets a very positive example. By speaking up for my needs, saying, “Hey, I can’t carry you right now. I need to be carried. Would you support me and honor my needs?” — that hopefully shows others how they can communicate their needs in a positive way and that it’s okay to say no sometimes.

Saying Yes To Creativity

My illness has robbed a lot from me, especially my free time and creative energy. I used to spend a lot of time composing music, practicing drawing, shooting and editing photos, creating board games, etc. All of that has faded away.

But with a little more margin, I’ve been learning to play the ukulele a bit and have also been inspired to hone my writing skills with poetry lately. I love the challenge of trying to capture a truth in a way that feels both universal and personal, free while structured, both visceral and metaphorical.

Here’s one of my latest poetry efforts. It’s actually a condensed and refined version of a longer poem I wrote that was far more personal and cathartic.

It’s about the experience of grief and loss. I resisted the urge to sweeten it with a comforting ending, because most often with our grief, comforting words actually sting as a denial of what we’re going through. What we need is an acknowledgment of our anguish, for someone to witness it as real and present.

I hope maybe this speaks to someone who needs to hear it.