Life on Cell Block N(euro)

The last 48 hours in rehab were crazy, so I am a little late on this post. I am home now – this is about how I spent the last 2 weeks. This post is long because there is a lot I want to remember. Jump right to the Olympiad at the bottom for the short version.

Rehab Structure & My Team

The Sinai Neuro Recovery unit is a 20-bed facility 100% focused on recovering from traumatic brain injuries and surgeries. Each day revolves around three one-hour therapy sessions

1. Physical Therapy – Exercises to push and strengthen the areas of the body that are struggling. Going for walks, repeating basic exercises like toe taps on different colored balls, and riding a stationary bike.
2. Occupational Therapy – changes a ton day-to-day. Learning how to stay safe in your new (temporary!) limited capacity through things like practicing getting in and out of the car, grocery shopping in fake stores, practicing getting dressed, etc. There are also some basic tests for how your capabilities are coming back like tossing small blocks one at a time over a little wooden wall with one hand, then comparing it to the other.
3. Speech & Cognitive Therapy – brain games like Luminosity (an app), and lots of written work like logic puzzles from back in school. There are 6 dogs with 6 owners and 6 collars. Figure out who owns which dog and collar based on these clues: 1) Colleen does not own a leather collar, etc.

Patients are assigned a lead for each discipline that runs the sessions, track your progress, recommend what to work on next, etc. I LOVED my team.

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Schedule

Mon-Fri are standard 3 session days with Saturday a rest day and Sunday at 1/2 sessions. The schedule is super loose. A lead could come to grab you at 8 am, or the first thing you could see is a schedule dropped off around 9 am showing your first session at 10:30. This drove me INSANE for the first few days as I asked a dozen people to let me know what to expect so I could be ready and get the most out of my sessions and yet people just kept popping in at random times asking if I was ready to go.

Around day 4, things evened out through a combination of 1) me accepting rehab for what it was and appreciating how flexible the staff had to be given all the naps, tough days, medical procedures, etc. the team had to work around, and 2) My team noticed I was going nuts and landed on a schedule for me.

My World & Plan of Attack

So three hours of therapy most days (the only time allowed out of your room), then a one-person 1.5-hour visit due to COVID rules. That leaves 19.5 alone in your hospital room. The room was pretty fancy – 3 spots to sit, 3 places to keep your stuff, and a very limited television (thank you, Amazon Fire Stick!)

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That’s it, and moving between areas required a tech or nurse to come in and supervise. To move from bed to chair, click the call nurse button, and between 1 and 45 minutes later, someone would be in to help your make the move. By the second week, I had established the 10-minute rule. I could not handle the waiting, and I was solid enough with my walker and all the hand bars in the room.

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There are also a series of stations that you would expect to see in a really cool kids museum – A grocery store, a bus stop, a fake apartment. I actually learned a ton each time we visited one of these places. Don’t walk backward to get the next thing on the grocery list. Always take stairs with strong foot first up and weak foot first down. These things matter.

One nurse (meds & moving between spots) and one tech (general help – new towels, ice water, straighten bed once per day, etc. and moving between spots) are assigned 12-hour shifts. It was a huge deal to go at least 1 for 2. If they were both bad, you were sitting in dirty stuff, waiting forever, and being ignored with high maintenance requests like getting water. If 1 of the 2 was good, then you were in good shape. There were a few great nurses, and my man Lamont the world’s greatest tech. I’d say I had at least one good caretaker 75% of the time, and I actually looked forward to Lamont shifts.

I focused on 3 things to stay sane:

1. Keep the world small. Instead of tons of care packages and stuff lying around, I just had a handful of snacks, my phone, and my computer. Jenn was amazing at getting me what I needed, but it even bothered me to have too many clothes or Gatorade at any time because they weren’t in my plan to tackle the next day or two.
2. Every couple of days, add something to the plan that makes it feel like I am progressing. Showering and putting on my own clothes. Using a computer. A stretching routine before each session. Adding it all together made it feel like I was progressing towards something – home and independence.
3. My list – Each day, I had ~5-8 things in my moleskin to check-off, and every single one felt good. Making sure I had the equipment I needed at home, some extra homework from PT, ordering dinner :-), they all earned a little check on the list.

Mötley Crüe

A few of my friends were sitting around a firepit discussing my situation when one of them made the profound comment ‘Dude, your brain is connected to, like, everything.’ After a moment of looking around and letting it sink in, the profound-ness brought the house down. The patients in the neuro ward highlight just how true that statement is. We do not interact much, just a head nod as we pass in the hall or a smile passing in the hall but watching everyone work through their challenges in the gym is eye-opening.

The average age is probably 60, but we go as young as a 16-year-old who clearly went through something tough and is working back to standing. Other, older folks are walking independently, but struggling to remember things in their Speech sessions. There are wheelchair-ridden folks that are cracking jokes. The biggest indicator of just how profound the impacts of head trauma can be is in the little things. The range of personal hygiene is HUGE, and the fashion choices when hospital gowns and hammer pants and oversized socks with treads are all available in various browns and pale blues make for a truly Mötley Crüe. Seeing it all, I keep thinking how lucky I am that the surgery impinged upon my motor-cord and not my cognitive/personality stuff.

The Olympiad

OK, I’ll admit it. I have competitiveness issues. In high school, it was a problem as I was neither a good winner nor a good loser, but over time I’ve practiced both, and now it is more of a fun diversion. So, of course, every time I walk into the gym, I can not get the idea of a 20 person Olympic-style event taking place on the last day before release. There would be 3 events with the excitement, fan-friendliness, and TV ratings rising as the day goes on:

1. Occupational Therapy – A biathlon style event where you toss 50 little colored blocks over a 6-inch wall with your right hand, then slide to the next table and fold a shirt and pants and ball a pair of socks. Then slide back and toss the 50 blocks back over the wall with your other hand.
2. Speech & Cognitive – Luminosity is a set of little games which are each ~3-5 minutes long that are fun but test different cognitive skills (show 2 math equations and quickly say which is the larger value, or a pond with 10 moving fish, every second you get a pellet of food to feed the fish, feed each fish once). This would be a seeded single-elimination tournament with Jeff Van Gundy and Mark Jackson commentating. Each round ends with Jackson dismissing the loser while making an off the wall semi-related comment like ‘Sarah brought her ‘A-game,’ but you can’t fake championship DNA.’
3. Physical Therapy – The real crowd-pleaser is the 15-yard dash. Standard rules – participants choose their weapons (wheelchair, walker, cane, brace, or unaided – if you choose wheelchair, you have to pull yourself forward with your feet. None of this bush-league pushing the wheels with your hands stuff… I mean… you chose a wheelchair). We all lineup, the gun goes off, and away we go.

The big day plays out like the network execs dream—great sportsmanship, heartwarming human interest stories, and, most importantly, some hard rehab work and tight matchups. I have a strong showing in the Occupational Therapy event though my left-hand costs me at the final stop. The commentators blame having less than 3 weeks since brain surgery and the swelling that impacted my arm and hand, but a couple of my buddies swing by the booth to clarify I was not very coordinated to begin with. I cruise through the Speech & Cognitive section and roll into the 15-yard dash feeling good, but things go wrong right from the jump.

My stare-downs and stink-eyes aimed at the other competitors are undermined at every turn by short attention spans. There is a minor scandal as I choose a walker, but ALSO my foot brace to help with toe clearance and stamina though the judges eventually allow it. Reality sets in, and I lose the 15-yard dash by a full 9 yards – and the gap was growing. I leave with a bronze medal, and my head held high. Dolores deserves her gold. She’s been showing off her dexterity for the full two weeks, hitting all the different colored dots on the floor in the gym first try, and confidently walking without an aid between her room and the gym, smiling and laughing the whole time. Her questionable hygiene might even have helped her a little on the starting line. She is a worthy champion.