Sleep: The Recovery Nobody Warns You About

People often ask what our days look like now, so I thought I'd share a glimpse into our new normal.

At first glance, our days have settled into a pretty predictable routine.

8:00 a.m.: Wake up, coffee, showers, and breakfast.

9:30 a.m.: Occupational therapy at Whittier. While John is in therapy, I work through medical phone calls, insurance paperwork, referrals, etc.

11:00 a.m.: Head home for lunch. John usually waters his flowers, checks on the pool, or finds little projects around the house while I continue tackling paperwork.

1:30 p.m.: Speech therapy at Whittier. Another hour for John to work hard with his therapist while I make more phone calls and coordinate appointments.

3:00 p.m.: Home again. I take the dogs for a walk, then John and I work on our aphasia homework, speech sounds, and flashcards together.

5:30 p.m.: Feed the dogs, make dinner, and enjoy a quiet evening.

7:00 p.m.: More speech practice with flashcards and sound drills before winding down.

9:00–10:00 p.m.: Watch a little TV. John usually falls asleep around this time, and I try to be asleep by 11:00.

It all sounds pretty organized.

The problem is that our nights don't cooperate.

John isn't sleeping through the night, which is fairly common after a stroke, especially one affecting the brain the way his did. His brain often wakes him around 3:00 a.m. He'll lie there until around 4:00, eventually take a lorazepam, and try to get back to sleep before our alarm goes off.

Meanwhile, I'm still trying to undo months of working with teammates in Melbourne. Until just a couple of weeks ago, my evenings didn't end at dinner—they ended with meetings. I routinely worked until 9:00 p.m., ate afterward, didn't get to bed until around 1:00 a.m., and slept until 9:00 or 9:30.

So between John's healing brain and my old work schedule, neither of us has figured out what "normal" sleep looks like anymore.

Most mornings I wake up only to discover John has already been downstairs. Sometimes he's coloring. Sometimes he's working through one of his activity books. Sometimes he's just trying to keep his mind busy while the rest of the house sleeps. I'll share a few pictures of the things he's been creating during those quiet early morning hours.

Today one of my goals is to figure out who John's neurologist at UMass is so I can ask what options we have to help him sleep through the night. At this rate, we're both running on fumes, and our under-eye bags have developed under-eye bags.

The good news is that speech therapy continues to move forward.

Yesterday, John's speech therapist gave us six sound cards to practice at home. We're focusing on tongue placement and relearning how to produce individual sounds. He's doing well with O, E, L, and M. He's making progress with A.

The one giving him trouble?

N.

It's amazing how something we never think about—where our tongue goes to make a single sound—can suddenly require concentration, repetition, and determination.

🎵 One thing that has been surprisingly fun is music.

I created an "aphasia playlist" for our drives to and from therapy. Every song includes simple, repetitive sounds that match what we're practicing. Songs like "Na Na Na Hey Hey Hey Goodbye" or "Minnie the Moocher" with its "hi-de-hi-de-hi-de-ho." From the Blues Brothers movie.

Sometimes John hums along. Sometimes he mouths the sounds. Sometimes he surprises me by joining in more than he did the day before.

Whether the science is exactly right or whether it's simply giving us another way to practice, I love seeing him engage. If music can help recruit healthy parts of the brain to support the injured ones as they rebuild those pathways, then we're going to keep singing in the car.

Recovery isn't always measured in words. Sometimes it's measured in a single sound.

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