Imagine that you decide to drive to Florida. It’s nighttime and you don’t have a GPS. You get in your car and find that your headlights are dim and you can only see 100 feet in front of you. You hit the gas and can’t get above 30 mph.
Now what? How do you get to Florida?
You drive 100 feet at a time and make decisions about which path to take only when you can clearly see that part of the road. It’s slow going but that’s ok. You’ll get there when you get there – the important thing is to keep moving forward.
When I was Kinesiology major at Maryland, we were told that it took 10,000 hours of practice to master a skill. This “10,000 rule” has since come under fire, but the idea of repetition for mastery of a still holds merit. When it comes to training or rehabilitation, the question is just how much repetition and just how long until progress becomes meaningful?
Some days it’s all that I can do to keep Dad moving forward. He’s been an amazing and willing patient through all of this, but the honesty of the situation is that it’s a constant battle. Intrinsic motivation is hard to come by and the drudgery of everything can leave him depressed. While driving home from a particularly productive PT session yesterday, (many thanks to the owners of my clinic and to Traci, his PT, as Dad’s health benefits are long since run out) Dad caught me off guard.
“If it weren’t for you, I’d never have tried that independent walk on Saturday. You made it possible….I’m not sure how I’ll continue this when I go home to NJ. I don’t know what I’ll be able to do on my own.”
This past Saturday Dad walked about 40 feet independently, without a cane and with no one nearby to catch him if he fell.
It Was Monumental.
Dad’s Solo Walk on Aug 15, 2015
We were at Maximum Performance Physical Therapy (specifically my company’s primary location in Laurel – I work in their Odenton office). My owners have been kind enough to let me use the space anytime the clinic is closed (as Dad’s actual PT benefits through Blue Cross would barely have rehabbed a sprained ankle let alone a massive stroke). That morning, before we left for the clinic, he had experienced an emotional meltdown over the task of getting out of a chair (sit-to-stand as the rehab world calls it). This happens more often than any stroke survivor or caregiver wants to admit. He was so focused on his “performance” of the task that it paralyzed him and he was then unable to do it at all. (This also is a common occurrence as his post-stroke brain is now working to manage all movements consciously with half the tools. I liken it a one-handed juggler struggling to keep all the balls in the air during a windstorm). Within seconds of the “performance error” we were in a cascade failure – the emotions he wrangles daily overwhelmed him. He was emotional and I was left fighting to stay afloat myself and bring him back to the “light.” So, once at the clinic, my plan for the day was to attack the sit-to-stand and remove this monkey from his back.
After a few good repetitions, I decided that incorporating walking a few steps independently after standing up might allow him to see some progress. I reminded him that his focus needed to be on the left side (as the unaffected right side is automatic). He listened, and for the first time since his stroke – it actually meant something! He stood up from one low PT table, walked 6 steps, turned and sat down on another table. I stood in between just in case and made him repeat the process 8 times. After sitting down to rest, a smirk crossed his face.
“You better watch out Ang. One of these days I’m just going to stand up on my own and go.”
The idea hit home and I decided his idea wasn’t half bad. It would serve multiple purposes – to give him confidence in himself and to force me conquer my fear of letting him go without the safety net of my support. If he said no, at least I’d be calling his bluff…
“One day? How about TO-day? Get up and walk over to that chair. No cane. No help. Just you.”
There was a fleeting look of panic that crossed his face. He scanned the room – took in the distance to the chair. His hesitation didn’t last. He took a deep breath and then there was only resolve in his eyes.
“Alright. Watch me.”
Now I was nervous. I trusted him and knew that he could do it, but letting go of the responsibility of his safety was surprisingly nerve-wracking. I exhaled and tossed out one last series of cues.
“Remember – focus on the left. Take your time.”
He stood, walked away from me, crossed the entire clinic to the chair and sat down. His smile was the biggest I’ve seen since December.
“Get a video. This one’s for your blog.”
He went again. I got the video. He walked the distance two more times. When he finally sat down to rest he cried – his first tears of joy since December 25, 2014.
It’s no surprise that stroke recovery is a marathon and not a sprint. There are uphills where you struggle and progress feels like it comes to a halt (or reverses). There are downhills where you coast and gains come at you so fast you feel like you could handle this indefinitely. It’s constant and unrelenting with no breaks for the stroke survivor. Dad attempted to put it into words for me.
You wake up a stroke survivor. You eat your meals a stroke survivor. You walk to the car and go out to a restaurant a stroke survivor. You greet friends, answer emails and watch TV a stroke survivor. You go to bed a stroke survivor. There’s no escaping it.
Rehabilitation is constant – your mobility impairments can’t be “put on a shelf” to give you a mental break. They are as much a part of you as your receding hairline or freckled skin. As such, often caregivers also get no breaks. They have the same identity crisis in their day-to-day. They live each of their moments as the care giver to a stroke survivor and feel entirely responsible for their care and yet often helpless to alleviate the burden on their loved one.
At least, I do. Especially when Dad told me yesterday in the car that he didn’t know what he’d do once he was home and I wasn’t there. In that single statement he summed up my greatest fear in this process: That I won’t be able to get him far enough no matter what I do because it’s not my recovery. That the real burden lies on him – not me. He’s the deciding factor and I’m just here to help set him on the right path. No wonder parents are scared shitless when they have to give their kids freedom to live their own lives…
Dad left his house in Central NJ on Christmas morning with the intent of visiting my grandmother in South NJ and coming home that night. He planned on a 10 to 12 hour round trip (2 hours driving each way with our family’s Christmas festivities between). His stroke changed all that. It’s been almost 8 months and he still hasn’t made it back home. Sometimes it crushes me just to think about that fact. His entire life has been in a state of suspension since December 25, 2014 and though we’ve given 110% each day, he’s still not ready to try to head home yet.
But today we are closer than yesterday and tomorrow we will be closer than today.
The key is to keep going, keep trying. It doesn’t matter how quickly you’re moving or what it looks like to others – rather that you’re moving forward.
Just keep putting one foot in front of the other…
And repeat x 10,000.