Since mid-August, I’ve worn these boots. But they aren’t made for standing. And, believe me, they aren’t made for walking, no matter what Nancy Sinatra sang about hers. My boots aren’t glossy black and they definitely don’t go-go. We hoped they’d slowly straighten my feet so I could stand and eventually maybe walk a few steps—say from a bed to a wheelchair.
At first, I wore them twenty minutes a day. Lo, at break of day, the caregiver straps them on snug and tight. I eventually reached seven and a half hours a day. Each night, we check for bedsores from the constant pressure.
But, I love these boots in the same way that I love painful physical therapy. Each minute I wear them, I envision them bringing me a few seconds closer to my goal.
A few days ago, about seven months into doing physical therapy, I was alone in my room at this care home working through my long list of daily exercises. About halfway through, I picked up my phone and turned on Voice Memos.
This is the sound of getting better.
This is the sound of getting closer to home.
Most irritating about the boots is the uncomfortable, sloping angle of my legs sticking straight out in front of me (unlike the photo I took) as I sit in bed most of the day using my laptop or arguing on the phone with insurance companies, with my “foot jails” on. Recently, I haven’t worn them as many hours, and it’s a sweet relief.
At an early visit, my physical therapist measured the angle of my ankle as I forced the top of my foot up as far as possible toward the front of my leg (dorsoflexion). Standing with your feet flat is zero. Walking requires being able to effortlessly glide well into the plus side of zero with each step. I was stuck way down in the minus position, and, sadly, I’ll probably never get to the plus side. (“Who knows?” whispers a little voice.) Small bones and tendons are torqued in ways that impair progress.
I see women on TV wearing high heels and want to scream, “Take off your shoes! Vanity is destroying you!” I actually watched an episode of Orange is the New Black (such brilliant actors) and my reaction to these incarcerated women was a splendiferously psychotic, “Yeah, well at least you can walk!”
So, living in Minus Land, I only did exercises in bed. (To stand would mean to topple forward, landing face-first on the floor.) At first, I’d just gently turn each foot to the side and back, and my toes toward me and back, five to ten reps—along with about three other actions too pathetic to be called exercises—and I’d need my feet packed in ice for twenty minutes after the session. I’d sustain injuries even doing those tiny movements, leaving me with red, swollen areas that stretched from big toe to ankle, throbbed like the dickens and were too tender to touch.
Later, as I progressed, I used a special belt to pull each foot into dorsiflexion in order to stretch the back of my legs. I had to put on thick gardening gloves that my husband found, because one of my hands and its arm had nerve injuries. They helped a bit. I still do this one. It stretches my Achilles tendon and my gastrocnemius. I ask you, who wouldn’t want a supple gastrocnemius? As time slowly dragged along, the list of exercises morphed and lengthened as I, um, made strides.
The person standing in for my doctor was Ms. Snarky Smirkitude. Oh, what a knack she has for discouraging a patient. None of the doctors had hopeful things to say. But my physical therapist was great from day one. I’d show exactly where an exercise hurt (to the extent that I was risking injury). She pointed out that if I turned my foot in a slightly different direction, I could find a place of little-to-no pain, and then do the exercise in that position.
This approach enabled me to continue working even when I thought I couldn’t. I thought of all the things in work/life that seem impossible. Maybe just a tweak is needed. Find another way, a way that doesn’t hurt as much, and move forward. If the only two options in a situation are lose or lose, ponder until you find a third way.
My PT once gave me an exercise in which I was to sit at the edge of the bed and try twenty times in a row to stand up. At that point, I couldn’t even get an eighth of an inch off the bed. I’d start by whimpering and saying, “No, no, no. Okay, going to do it, going to do it.” (I was alone as I said this.) Then I’d push off with both hands and nothing would happen. I’d still be sitting on the bed. I used so much force working on this that for several days my eye sockets would hurt each night, despite my pain medication.
Finally, I managed to get my butt an inch or two off the bed four times out of twenty. I yelled as I did each try; the caregiver would come to close my door so I wouldn’t disturb the other residents. When I was done my entire body would be wracked with pain. Wracked. Not a word you want in your life, ever.
When the PT came back, she was startled. “Oh, I didn’t mean that you should actually try to stand up! I just wanted you to go through the first motions, so you’d get a feel for it! I can’t believe you did this!” Hah! Joke’s on me!
I continued doing them, and the main caregiver started coming to the door, not to close it, but to watch me as I did my Navy Seal training yell (or what I imagine one would sound like), until one day I was raising my rear end six to eight inches, always falling back down onto the bed, as my ankle bones yanked at my tight, degenerated, inflamed tendons. Her eyes would widen, she’d grin, or come in with genuine excitement, and then turn away to get back to work. I felt victorious.
Each week I’d do my routine, and invent more exercises than I was assigned. For example, I finally was able to stand up. I’m hunched over and wobbly, but I can do it now. (Two minutes and twenty seconds, if I’m prepared to not stand up at all the next day.) Taking a step, though, was a distant dream. So, I thought, well, what would my first micro-movement be? Being able to put all my weight on one foot. That’s how to walk. But, with my deformities and sorry excuse for tendons, I can’t put all my weight on one foot.
So, bring it down to the smallest unit. Okay, that would be to practice rocking side to side, putting some weight on one foot for just a moment, then on the other. At first, I’d lean using a hemi-walker, which you use with one hand. Then I worked on not holding onto anything. I’m still doing this one. You heard me doing it, a few paragraphs back. I do twenty on each side, and later I do twenty on each side again.
I need to be able to get out of a wheelchair. So, I thought, okay, how will I do that? The arms are too high to push off from. I need strength to do this and my arm is injured. So when I do my PT now, I start by standing up ten times in a row, without using my hands to get off the bed. I started with the bed high, and pushed off with one hand. Now, I lower the bed to make it more difficult, and cross my arms and stand up and sometimes reach out a hand to lightly touch the wheelchair that faces me, so that I don’t fall forward.
When the time came during our appointments for me to try to get out of the wheelchair, I rose almost effortlessly. I learned that if you can’t do something, figure out the tiny steps, and focus on just doing those. When you’ve mastered those, do the next set of tiny steps. Another darn “applicable to everything” life lesson.
I keep a detailed chart of every exercise I do. That old, oft-quoted story about Jerry Seinfeld keeping a calendar and marking off each day that he worked on his career, making sure that every day had a big X? That was me and my chart. It works. That method Dan Mall has been using to make sure he does the most important work first each day? I always do my biggest PT session of the day right after I take my boots off in the morning. I have never left it to do in the afternoon. It works.
When I had the flu for two weeks in December, I only missed three days, even doing my routine when I had a fever. If I had allowed any excuses or exceptions, I’d never return home. I’m not a fitness devotee or jock. My usual version of exerting myself is doing a really good stretch to reach across a table to grab the cupcake with the most frosting. All I knew was that I had to improve, no matter what the prognosis. My situation was non-negotiable.
Apparently, I have by far the longest daily PT session of any of my busy therapist’s patients. Yikes. How can that be? Yet, I’m driven to keep adding exercises to her assignments. I suppose it’s my pressing financial, emotional, and marital reasons to go home. And by Grabthar’s hammer, by the Suns of Worvan, I will get out of here—and soon.
Shocking my physical therapist became a major motivator. I’d secretly practice things my PT didn’t know I was working on, to strengthen a part of my body. She’d come in, prepared to introduce something new. It would be something hard. I’d think, “No way.” Then I’d try it and we’d both gasp because I’d achieve something completely unexpected. Hive fives all around. I love the look of shock on her face. This encourages me. She knows exactly how to work with me. We’re in it together, collaborating, mutually respectful. I love it.
Well-meaning friends and acquaintances sometimes say to people in difficult situations like mine, “Be strong!” or, “Keep trying!” Read those again. They are commands. They rob me of my power. They imply that I wasn’t going to be strong or keep trying, but thank God they could come along and tell me what to do. Suddenly, my hard work is framed as their idea, as something they’ve assigned me. Not everyone reacts this way, (they have their own list of “helpful” words that bug the crap out of them) but, listen, I want to own my successes, as small as they may be. It’s my damn sweat, it’s my damn pain. (If you’ve said something like this to me in the past, I’m long past it, or I know you and didn’t notice. Please don’t be concerned.) My physical therapist has never used phrases like that. Not once.
I also discovered that many of her patients make lackluster attempts at exercises. They not only don’t “Navy Seal” it, they don’t do their assignments at all. I feel nothing but empathy for them. Zero judgment. Your world is upended. Your surroundings and every minute of your day are beyond your control. You’re a powerless child in a bad orphanage in a foreign country and no one is coming to rescue you.
For example, my concept of gratitude is not the same as someone else’s. Being grateful that I live in a first world country with clean water may help me. That doesn’t mean that gratitude helps someone else—and my gratitude may only last a few minutes. Or, a nanosecond. This is not a contest. If you are taking another breath, you are a winner. Good on ya.
People by the millions are warehoused all over the US. I think back to my grandfather who lived in a highly rated home for a bit in a different state and died there in his sleep at 92. Yes, my parents lived nearby. But now that I know what it feels like to be in one of these, I could gouge out my eyes with my fingernails, so ashamed am I that I didn’t find a way to visit him frequently.
I find that at the end of each appointment, no matter how successful, my PT leaves and I go into a death spiral of depression for a few hours. The closest I ever got to why is that I was realizing each time how much more I’d have to conquer before going home.
I tried to cheerfully announce any wins on Twitter, and then I discovered that a dear old friend thought I was doing pretty well because he’d seen positive tweets. No. I wasn’t and I’m not doing pretty well, though I’ve achieved a lot, at least compared to where I began. Life here is miserable. When I go home, I’ll be worse off physically than a week before I entered the healthcare system last April, though I hope with a better foundation for improving. I’ll go home before I’ll know if I can ever walk. I’ll go home in pain.
I’ll also return to a husband who hasn’t been in remission for over two years now. How on earth will we survive? I need to build a network here in Portland. How do I do that? I don’t know yet. Maybe that death spiral that comes swinging in after each victory has a different why behind it. Maybe it’s my attention pulling back from a total focus on PT to a more panoramic view of my life. And that is enough to make a person weep.
And, then, the next morning, I strap on my boots again.
Thanks to Stef Pause @ManxStef for converting my memo to an MP3, and to Paul Soulellis @soulellis for encouraging me to publish the sounds of my PT exercise.