Next Stop: Normaltown

Quick note: I’m going to talk about bladder and bowel logistics in this post. It may not be everyone’s cup of tea, but how these things change for spinal patients is important for me to record and, in my opinion, for you to understand.

Another quick note: I asked Althea if I should make the pun “everyone’s cup of pee” and she said, emphatically, “Dad. Dad. You cannot do that.” So if you’re wondering who robbed you of that dad joke, it was she.

It’s now been three months since the accident, and a month since I’ve been home. And since things are getting back to a (new) normal, I thought it’d be a good time to talk about what an average day looks like for us as we enter the next stage of my recovery.

The short answer is that our days are refreshingly boring. Everything is getting more routine and predictable. And we’re getting more comfortable with the injury and how it impacts our family, friends, and home.

My days always start around 5:00 in the morning. With my injury, I can’t control when my bladder decides to wake up, so I have to manage it through rigorously-scheduled intermittent catheterization (IC). And while I can’t control my bladder, I do get an “I have to pee” feeling roughly 5-10 minutes before the floodgates open. I typically pee at around 11:00 pm and it takes roughly six hours to fill my bladder overnight (less if I make the mistake of drinking a liter of soda water right before bed) so at around 5:00 I get that insistent feeling. It’s then a race to wake up and get going if I want to stay dry, and I can usually get myself together in time.

After ”cathing” I’ll put on a boring podcast, hoping to get a couple of hours of sleep before the kids come downstairs for breakfast. Once the house starts humming with the morning routine (and Dacia pours me a cup of coffee), I fold my blankets, get dressed, and hop into my chair.

Getting dressed is always an adventure. Imagine sitting in bed with your legs fully extended and immobile. Now bend at your waist, reach forward, and attempt to throw your pants over your immobile feet (while hoping you don’t trigger a whole-body spasm). If you manage to get the right parts of the pants over the right feet, congratulations! You now have to get them under your heels, which feel like they’re glued to the bed, and up to just below your butt. Now that you’ve got the pants nearly pulled up, you have to lie back down—giving up all the effort it took to sit up in the first place. Once you’re lying down you need to roll to one side and pull your pants up over one hip, then roll to the other side and pull them up over the other hip. And if you’re lucky you only need to do that once.

Once I’m dressed, I pull myself back up to a seated position, grab my legs, drag them over the side of the bed, lean over to my left, shove the transfer board under my right hip, and lift myself into the wheelchair. I’m still reticent to do this without Dacia close by, but I am getting braver—this morning I did my chair transfer while she was in the shower.

Once that I’m up in the chair, I can hug the kids goodbye, and grab myself a second cup of coffee. Now it’s about 8:00 and because I’ve been drinking coffee it’s time to cath again. Generally speaking, I have six hours between cathing at night, four hours during the day if I drink only water, three hours if I have a beer, and two hours if I have coffee—but it’s always a spot-on 450ml of urine before my bladder decides it’s time to pee. (Editor’s note: Now you know that and you can’t un-know it.) But this is the kind of thing I need to consider if I’m going out: how long will I be out? What will I be drinking? How are the facilities where I’ll be? Do I have enough supplies?

When Dacia takes the kids to school, I grab the lap board my dad made me and start tidying the kitchen and dining room. Dad built it to the specific dimensions of my lap in the wheelchair, so I can move a bunch of stuff—like dishes, cereal boxes, smoothie glasses, and Arthur’s cavalierly-discarded underpants—to where they need to go.

It’s now about 9 am and I’m entering what I like to call my “recover-tirement” where I do the kind of things that someone either recovering or retired might do. This could be anything from:

• Scheduling follow-up care (I‘m starting outpatient PT at the Vallejo clinic next week and I’m super-excited!).
• Discovering that our homeowner’s insurance was cancelled because Liberty Mutual is pulling out of California due to fire risk (spoiler alert: I do not live in a fire risk zone) and quickly buying a new policy. Shout out to Jake at Geico for not only getting us a new policy, but finding one that was actually cheaper than that Emu & Doug-adjacent insurer.
• Watching YouTube videos relevant to my interests. These days I have been enjoying bikepacking/touring videos, long nerdy video essays, and adaptive sports equipment reviews.
• Exercising—either in the chair or at the gym. Dacia and I have been getting back to the gym, and are currently aiming to go three times a week. The Oakland YMCA has a great handcycle: I can roll my chair right up to it, set a hill-climb routine, put my headphones in, and just pedal for 45 minutes.

Even though it doesn’t feel like I have too much to do, the mornings seem to get crowded, and we don’t get around to lunch until after 1:00. I’m still not able to do much in the kitchen, so Dacia has been putting together some great lunches. Her most recent accomplishment: since Ain’t Normal Cafe decided to stop serving their amazing Italian sub, Dacia has been making a faithful rendition of this classic.

At 2:30 Dacia heads out to get the kids, and I typically head back to bed. I still have a limited amount of time I can sit up in my temporary chair before the pain is too much. But thankfully this pain is still seemingly from the accident & surgery—I haven’t experienced any chronic pain yet, and fingers crossed I’ll feel better when I’m fully healed.

When the kids get home, I have roughly 35 milliseconds to ask them about their respective days before they vanish to their rooms or into their devices. Arthur has been playing Kerbal Space Program and is honestly better at the game than I ever was. And since uncle Ché mailed his PS5 to us, Althea and Arthur have been playing Split Fiction while laughing and screaming and generally having a great time being siblings. It makes us very happy.

Dacia then cooks dinner. I honestly don’t know where she finds the energy, but I’m happy that she does. (Dacia’s note: I take about 30 minutes of downtime in bed where I stare at the ceiling or mindlessly scroll TikTok videos). Sometimes we manage to get together around the dinner table at the same time, but sometimes I just need to be lying down. Regardless we’ll eventually put on a show we can all watch (lately it’s been Andor) and get through a couple of episodes before it’s time for Arthur to go to sleep. This is really when the day starts to feel like things are getting back to normal—arguing over what to watch, making dumb jokes, and listening to the kids complain about how they don’t like a meal they’ve eaten a hundred times. But then comes the event that reminds us how different things are now—the ominously-named ”bowel program.”

Once Arthur is in bed (having completed Wordle, Connections, and Strands), Dacia helps me with “the pooping.” I don’t have control of my bowels or any warning before I poop, so the way we manage that is through a consistently-scheduled Bowel Program.

I first learned the phrase “bowel program”all the way back in February at the Vallejo clinic. Every night at 9:00 I would transfer to a commode chair (a wheelchair with a toilet-bowl–sized cutout in the middle of the seat). One of the amazing nursing staff would then place a bucket under the chair, put on multiple sets of gloves, lube up a finger and perform what is euphemistically referred to as “digital stimulation.” In less clinical terms: they would stick a finger in my rectum and work it around to assess the ahem situation. This maneuver can also stimulate the gastro-colic reflex, eliciting an unpredictable (and therefore somewhat exciting) evacuation. Honestly, you haven’t lived until you’ve pooped in front of two people—one of whom recently had a finger in your butt—two people who then go on to applaud the size, scope, and consistency of your poop.

Anyway, Dacia is now the person who helps me with this. If I wasn’t already confident how much this amazing person loves me, her unbothered and insanely-competent management of my Bowel Program would be more than enough to convince me.

And once I’ve pooped, I’m off to bed. After a few minutes of awkward cuddling on a too-small twin bed that makes us nostalgic for college, Dacia gets up to tidy the kitchen and get ready to start it all over again tomorrow.