Altogether, I was in various hospitals for about 2 weeks during the last month: 24 hours in Missouri Baptist for the initial diagnosis and work-up. Five days at Barnes-Jewish (WashU) for the surgery and initial recovery. Then a week at St. John’s Mercy Rehabilitation Hospital. I received world-class care at all three hospitals, but the most comfortable by far, and the place where I made the most progress towards recovery was St. John’s Mercy.
It’s worthwhile reviewing the state I was in when we transferred to Mercy:
1. I couldn’t get myself out of bed without direct physical assistance.
2. I couldn’t walk without direct support, and even then, I drifted to the left, since my left side was still measurably weak.
3. Proprioception was basically non-existent, as shown by numerous neurological exams.
4. Fine motor control of my left hand was severely diminished.
5. I couldn’t maintain my balance with my feet together and my eyes closed for more than a few seconds.
6. When asked what my goal for rehab was, it was entirely reasonable when I answered: “self-reliance”, because at that point, it was unclear how much day-to-day care I would need moving forward.
Leaving Barnes to go to rehab was a major improvement for us. Jing got her own bed, we had a large, private room, visiting rules were considerably looser, food could be brought in from the outside (and Smash Burger with tasty mint Oreo shakes was just a few miles away). Mercy was also a lovely facility, cheery and bright with great rehab gyms, an open floor plan, common areas, and an outside garden. I’d like to thank all the people at Mercy who contributed to my care, including Dr. Evra, Dr. Edelman, all the nurses, Amy, Libby, Jill, Adrian, and of course, Shannon, my speech therapist. If I’ve forgotten other names, please forgive me, my memory isn’t what it used to be.
A note on Occupational Therapy and Physical Therapy: this is hard, hard work. For the patients AND the therapists. I’m pleased to say that several of my best physiology students at UMSL have gone on to PT school, and I wish them the very best luck possible; it’s important and difficult work. If you’re ever unfortunate enough to find yourself in a rehab situation, take my advice: play along with the suggestions your PTs and OTs are making. Many of the exercises sound silly, like tapping different colored cones with your toes in specific sequences. But these people are professionals and have helped many people before you; it’s best to just go with the flow, and let the experts run the show.
The first day is all about evaluations. They started me in a wheelchair. Unfortunately, my left side was so weak, I inevitably drifted left even while pushing myself in the chair, and would have gone in circles if I wasn’t constantly bumping into walls. Very discouraging. I also got an evaluation to see what my “fall risk” was – miraculously I scored a 54 out of a 56, therefore sparing myself of a whole lot of supervision and mandatory precautions. By the way, my high score may have been severely curved to the rest of the rehab patients. Nonetheless, as evidence of how “Type A” I can be, I asked: “on which tasks did I lose those two points?” Eventually I earned a certificate that said I had the right to walk the halls without direct assistance, which I exceedingly pleased with.
This certificate is kind of a big deal, because without it, you are obligated to get assistance if you want to get out of bed to go to the potty, or walk down the hall for fresh water or to get dinner. Also, the PTs are obligated to use a toddler leash on you to reduce the risk of injury from falls. I was delighted to have some degree of self-reliance returning. I didn’t care for wearing the toddler leash very much.
Fortunately, strength and coordination returned quickly once I was in the rehab hospital. It’s a matter of some interest to me whether this was due to the exercises I was doing in rehab (most likely) or whether this was merely the normal course of my recovery from brain trauma (which isn’t mutually exclusive with the previous explanation). In any case, after a few days, I stopped bumping into things on my left side, and after a few days more, I stopped having to remind myself to steer well clear of obstacles on my left side. Interestingly (see nearby image), I was told that I kept tilting my head to the side to compensate for this tendency… the exact mechanism has never been explained to me.
The folks in OT had heard that I do science experiments for a living, and it became an interesting challenge for them, figuring out the best way to rehabilitate extremely fine motor control. After some different trials, they settled on a task that involved using coarse tweezers to place minute metal pegs into a board, and then add washers, nuts and bolts. It was, I suppose, the best practical approximation of the work I actually do in lab.
“…your fingers would remember their old strength better if they grasped your sword...”
Moving my narrative a bit more abstract, I took some comfort from a classic scene from Lord of the Rings, where Gandolf frees Theoden, King of Rohan from Saruman’s curse. In my version, I’m played by Theoden (naturally), Dr. Chicoine (my surgeon) is played by Gandolf, my tumor is Saruman, and Jing is Eowyn. Perhaps a bit over-dramatic, I know. Forgive me, I’m on psychoactive drugs. The scene that gets me is when Gandolf tells Theoden “your fingers would remember their old strength better if they grasped your sword.” Happily, I have never carried nor needed to carry a sword. But the sentiment is still valid. After a few days in rehab, Jing, my lovely wife, brought my Dell Precision laptop into the hospital, and it did indeed feel good to be reconnected with all my friends and the wider world. I suspect it did a world of good for the rehab of my hands as well, although my left hand does ache mightily after an hour or two of typing, etc. While we’re on the subject of Theoden, I also like the scene at Helm’s Deep where he asks rhetorically “how did it come to this?” That about sums it up for surgery day.
Having guided two children through toddlerhood (although with Quinn, she still takes some steps backwards), and am in the process of guiding another into toddlerhood, I can speak with some authority on what they like and don’t like. After a full week of physical therapy, I can appreciate much more fully their small triumphs. For example, merely standing upright, and ambulating from point A to point B without bumping into point C is a real accomplishment depending on your circumstances, and should be respected accordingly. Likewise, it takes a good bit of motor planning (usually performed by exactly the region of my brain strangled by my tumor and removed by the surgeons) in order to walk across a room and press the appropriate elevator button. I get it why toddlers feel so good about themselves when they succeed at this task, and Jing was kind enough to give me the opportunity to have this satisfaction whenever we roamed the halls at Mercy Hospital. Another toddler triumph: ketchup packets. Next time you use sweet, sweet ketchup on French fries, please reflect on how many different motor units need to be coordinated to access the ketchup without making an enormous mess, and how much coordinated strength it requires. I think you’ll find ketchup tastes better with that realization.
Hurray for toddler accomplishments:
Currently, I’m very happy to report that my fall risk is extremely low, and that I can operate elevators whilst simultaneously opening ketchup packets and checking email on my phone. To wit: the out-patient OT and PT folks unanimously discharged me after a brief evaluation. From a physical standpoint, rehabilitation has gone very well so far. To the point that I get a bit irritable when well-meaning functionaries at hospitals ask if I need a wheel chair to get around. For this I thank the folks at the rehabilitation hospital as deeply and sincerely as is humanly possible. The week I spent at Mercy was extremely valuable, and changed my perception about how debilitating the aftermath of this surgery would be. Thanks to them, I’m confident I’ll be back to teaching physiology next Spring semester, and I’m going to encourage my students to consider careers in PT and OT. It is essential, critical work.