Friday, April 18, 2025 - Day 248

Friday, April 18, 2025

Good morning, from frozen Fence Lake!

Every time I travel to northern Wisconsin, I’m struck by how the weather seems to be running on its own schedule. Just over 300 miles from Crystal Lake—where spring has taken the wheel, tulips are poking through the soil, and landscapers are fluffing up flower beds for Easter—Fence Lake is still hanging onto winter like it’s got unfinished business. When Lis invited us up for Easter weekend, I held out hope for a little spring sunshine. Plus, the chance to spend time with family made it an easy “yes.”

Leaving yesterday morning was a bit of a production. Cindy handled Bear’s two morning walks, dropped him off at Joe and Donna’s for his weekend doggie playdate, made breakfast, packed my suitcase, picked up the house (so the cleaning lady wouldn’t flee), ran to the store, cleaned the kitchen, and loaded the car.

My job? Clear away the avalanche of tax-season paperwork. It took me ten minutes, during which I broke into a sweat and ended up panting like I’d run a half-marathon. My body reacts to any effort like it’s an Olympic event. That’s ALS for you—transforming minor tasks into major feats. These are the moments that sting the most. It feels so unfair that Cindy has to carry the whole load just to get us out the door for a weekend getaway. Grrrr.

Still, we were on the road by 10:30—only 30 minutes behind schedule, which is basically early by road trip standards, but late by mine. The only deadline we were up against was Wisconsin’s flexible interpretation of “cocktail hour,” which can start anywhere between 3 p.m. and… well, whenever.

The drive was quiet. The Northwoods are in their awkward in-between phase—not quite winter, not quite spring—so there’s not much to do outdoors, and traffic is light. Most of the FIBs won’t show up until Memorial Day, when summer officially kicks off.

About two hours in, Cindy asked if she could drive. I wasn’t sure if she was offering me a break, silently critiquing my driving, or just curious to mix it up. Either way, we switched at the gas station. And that’s when I realized—I don’t remember the last time I rode shotgun. Cue mild panic. Maybe this is the beginning of a long game to ease me out of the driver’s seat for good. I know that day is coming… I’m just not ready for it to come any sooner than necessary. My perception of my driving might be a little… biased. We may need a neutral third-party to weigh in. Stay tuned.

We rolled into Fence Lake around 4 p.m., having taken our sweet time. Cindy even gave me the wheel for the last stretch—probably so I could maintain the illusion of normalcy when Steve and Lis greeted us in the driveway. Pride preserved, mission accomplished.

It’s comforting to be back up north, but the place also stirs up tough memories. Last August, early symptoms of ALS were creeping in—subtle, but enough to make me uneasy. A trip to the ER on our last day (August 9, 2024) ruled out a stroke and a brain tumor, which felt like a win… until four days later, when the real diagnosis landed like a punch to the gut.

Dinner last night was cozy—homemade split pea soup and grilled cheese (make-your-own… I supervised). We shared laughs, failed miserably at selfies, swapped stories, and caught up until what I consider “late night”—just after 8 p.m.

Before we left home, I received a pulse oximeter in the mail to test my overnight oxygen levels. Apparently, lying flat makes it harder for the diaphragm to function efficiently—gravity’s no longer on your team. My lungs have been the one area ALS hasn’t touched, and frankly, I’d like to keep it that way. The thought of getting bad news about my breathing? Hard pass.

The instructions were clear: one night of data, or send it back regardless to avoid a $500 fine. Good thing we packed it—otherwise we’d be stuck with a very expensive paperweight.

So, I strapped in last night. The foreign contraption and I didn’t exactly bond. I woke up multiple times, half-expecting a nurse to stroll in and check my vitals. By 5 a.m., I was up and completely disoriented. Pitch black room. No morning rhythm. Total chaos.

Thankfully, Cindy was there to get me settled into a comfy chair with coffee, pills, and water. Honestly, I don’t know how I’d manage without her. There’s not much I can do for myself these days, and this—this is the “for better or worse” part of the vows. It breaks my heart, but I’m grateful beyond words for her steady love and unwavering care.

Have a ”Good Friday”!

Love you guys!