The Soul Moves First
Your life is experiencing a wild and radical change entering the 21st floor of the Shirley Ryan Ability Lab (SRAL) in Chicago. You either were just shot, fell down a ladder or stairs, in a horrible car or motorcycle accident, or suffered a significant injury diving into a pool or body of water. Whatever the means, you have a significant spinal cord injury.
I fell down some stairs while hiking with my dogs crushing my C3 vertebrae. I am paralyzed from the shoulders down and breathing on a ventilator, celebrating being able to move a few toes on my left foot. Hopefully, this is the beginning of a long and complete healing process where I can learn to walk and function as a normal person again.
Some doctors from the intensive care unit I just arrived from opined there was little chance I would progress from where I currently exist. Others would not predict my future. Anxiety about my unknown future runs rampant as I look for hope and certainty of recovery.
Rolling into the Shirley Ryan Ability Lab front lobby I notice the words "The Soul Moves First" painted on the wall in bright colors.
"What does that mean?" I wonder.
The next day, I tell my new physical therapists (PT), Collen and Mollie, about my recovery goals of walking, being self-sufficient, playing the piano, traveling, etc.
I hear the words, "Those are reasonable." for the first time.
My soul quickens.
I think, "I'll be back to normal by the time I leave this place."
Over time, I learn an important lesson in my soul-moving experience. Listen closely to what people say and to what they don't say. They never said I would be normal at the end of my visit. They said it was a reasonable expectation to achieve those goals but never provided a timeline.
I learn one facet of the soul moving first is that a soul keeps moving. It is more a process than an event. They move my soul with the energy and creativity they bring to my recovery effort every day.
One day, with too much joy, Collen and Mollie roll a tilt board into my room. I have never seen one of these contraptions and look suspiciously at it. They strap me to it in a perfectly horizontal position. Then their fun begins. They start tilting the board vertically more and more, measuring my blood pressure along the way.
"Are you dizzy yet?" They ask.
"Feeling strong!" I reply in a shaky voice.
They continue to move me towards a completely vertical position with the tilt board and straps holding me up. I am getting more excited as I approach a full-standing position for the first time in over 42 bed-ridden days.
I focus on the details of a skyscraper that is outside my window. The details are starting to get blurry as I get more vertical.
"Are you getting dizzy yet?" They ask.
"No." I lie.
I am too excited to stop now even though the chances of me throwing up are growing exponentially with each adjustment upwards. They are moving my soul.
"I am getting close to standing with help now," I think," but soon I'll be standing with no help."
Unfortunately, the blood pressure machine tells them the truth and so they begin to tilt me back to a more horizontal position. I am the only person in the room thinking I am fooling anybody.
The next few days, they help me achieve the goal of standing vertically on the tilt board. Their wisdom, energy, and enthusiasm for helping me progress are contagious. My soul is moving and now my body is beginning to follow it.
A few days later, I am slumping over on the edge of a mat in the large public workout area. Collen and Mollie share a crazed look, no words are spoken. I am learning this may not necessarily be a good thing. Mollie grabs a walker and they use it to see if I can stand! This is lunacy. A week ago, I could barely wiggle a few toes on my left foot.
"Are you getting dizzy?" They ask.
"No!" I lie in my excitement.
Once again, I am the only person in the room that thinks I'm fooling anybody. Even with their help, I fail at the attempt. But the seeds of success are being sown. Hope is instilled, and progress is being made!
The severity of my injury and the complexity of recovering from it begin to settle in. Hope is a struggle. Collen sees this and begins a crazy conspiracy. She enlists a few other PTs, a nurse, and Karen, one of my respiratory therapists (RT). Their goal is the impossible. They want me to walk on the two-month anniversary of my fall.
I am only able to breathe with the aid of a ventilator. No one can walk harnessed on a treadmill breathing this way. It's never been done.
This is not a problem for Karen. Somehow she finds a tube that fits my ventilator equipment perfectly extending its range so I can stand a short distance from it and breathe. On that special day that I don't think is worth celebrating, this crowd of volunteers surrounds me lifting me from my bed into a wheelchair.
I roll into the main gym area breathing through my ventilator amongst a parade of people helping me. Several of them assist me out of the wheelchair and into the harness of a treadmill machine. I connect to my ventilator using Karen's ingenious modification. The treadmill starts.
Two months to the day of my original fall, I am walking on a treadmill assisted by a PT on each leg while being encouraged by several others. This is doing the impossible…walking in an upright position… against all odds… while on a ventilator… never been done before! Let some of those nay-saying intensive care doctors see me now. My soul is soaring! Andrew and Lucy video this incredible moment for my future use to inspire myself and others.
I struggle sleeping at night while on the ventilator due to congestion gathering in my throat causing a growing gurgling with each breath. This requires me to be suctioned with a small plastic tube to clear phlegm out so that I can breathe easily again. Mike, one of my respiratory therapists, visits me at night to help me out.
We talk about old TV shows and before we know it we are singing the "Gilligan's Island" tune amongst many other golden oldies. We finish with a rousing rendition of "Hey, Hey, We Are The Monkeys." I go back to sleep but my wife in the adjacent room is now awake wondering what is happening. She has a much harder time falling back to sleep than I do.
Another night a young nurse wakes me up taking a blood sample. She is quietly humming and singing and is pleasant to listen to so I do not mind being awake. I am not sure my exhausted sleeping wife in the adjacent room agrees. I ask her about her singing talent and she shares that she is a member of a Church choir. She asks me if she can sing a song she feels God is leading her to sing.
"Absolutely!" I say.
Her stunning voice fills our room with a soft, rich melodious song of love. I fill up for another day of adventure and struggle. This one time my wife goes back to sleep soundly.
I quickly became strong friends with my evening nurses as they came into my room to turn me every two hours to prevent bedsores. They also assist with other activities as needed. During their visits, we talk about our lives, future dreams, various sports teams, whatever, much to the delight of my exhausted, sleepless wife who is becoming more grumpy in the adjacent room.
On one middle-of-the-night visit, two male nurses and I were talking while I needed help with a certain "biological process." Noises erupt from my body. Noise typically not shared in public or elevators. Being an all-male audience, the adult conversation quickly degenerated into an early grade school mentality. We started dedicating various eruptions to people in our lives. We find this hilarious! My exhausted, sleepless wife who is becoming more grumpy in her desperate search for rest in the adjacent room isn't laughing.
Kelly, one of my occupational therapists (OT), diligently works with me to regain my arm and hand function. I am becoming frustrated as they refuse to progress like the rest of my body. Hope regarding their recovery is evaporating with each passing day.
I sense Kelley becoming frustrated. In one session I am fumbling with a fork trying to stab some fruit without success. I cannot even hold the fork without her assistance. I start going down a doom loop of despair. She does not.
She stands up and quickly disappears around the corner for a few minutes. I see her coming back rolling an odd contraption labeled Saebo. She quickly moves it up next to me and attaches my left arm. She begins making adjustments so that it helps balance my arm and assists with movement. What the hell is she up to I wonder?
She places a fork in my left hand, calmly looks directly into my eyes, and says "Eat."
Refusing to do so does not seem like an option at this moment. With the apparatus's help, I stab a piece of fruit, lift it to my mouth, and enjoy its sweet delicious taste. Wow! I have not been able to feed myself since my fall a few months ago. Now at the dinner table, I will not only give thanks for the food we are about to eat but also for the ability to feed it to myself.
As our session ends, I get ready to go to my room to share this breakthrough with my wife, DeeAnn. Kelly is supposed to take her break now but refuses. She rolls me and the Saebo device back to my room, reconnects me to it, puts the food in front of me, and says "Eat."
I am not sure which I enjoy more, the taste of the sumptuous fruit or the look of sheer shock and joy on DeeAnn's face. With one unselfish act Kelly has moved two souls in one day!
One day, I notice Edie, a woman with curly hair pushing a cart full of art supplies down the hall. We start talking and she asks me if I am interested in art therapy. I have no idea what that is.
I agree to do it anyway. We set an appointment for the next day.
"Are you ready to paint?" She asks me the next day.
I'm not sure if she's noticed I'm a quadriplegic barely able to get around in a power wheelchair yet and have no idea where this is going.
"How do you propose I do that?" I ask with a mixture of sincerity and sarcasm.
I try to wiggle my paralyzed arms in support of my question.
"You paint holding the brush with your mouth." She says.
Well, that's one way to shut me up I think.
She wraps a nurse's glove around her brush using a rubber band and sticks it in my mouth. Clinching the brush in my teeth I tip my head forward putting the brush into some color paint she is holding on a pallet for me and start to brush a few strokes on some paper in front of me.
After several minutes and colors, my Rembrandt is finished. She asks me what I was thinking while I created the painting. I make up a magnificent story about how there is a bright light in my heart-fighting darkness around it. I was rather impressed with it and she received my story positively. We set another appointment.
The next time we meet she asks, "Have you ever drawn a picture mouth-sticking a pencil?"
I haven't chewed on a pencil since early grade school I think.
"No," I reply.
"What are you going to draw?" She asks me as she sticks a glove-wrapped charcoal pencil into my mouth.
I contemplate a reply to mumble back to her.
A square, I think. Very boring. How about a tree? That could get complex pretty quickly I guess. I am getting desperate for inspiration on what to draw.
I think of my next-door neighbor Ryan. He has a unique curly cue mustache, serious eyebrows, and a distinct look. I will draw a cartoon caricature of my neighbor Ryan, I decide.
This will be the dumbest thing I've ever attempted I think. Anticipating failure, I decide I have to make up another incredulous story about whatever it is when completed.
Pencil to the paper I begin—first, the mustache. Several jerky curly cue strokes later I start to work on the eyes, then the hair, and finally the rest of his unique face. I roll back from my masterpiece.
"That is incredible," She says." What is it?"
The proper question I think is "Who is it?"
"It is my neighbor, Ryan," I say, ready to make up my story if necessary.
The carefully crafted mustache I created does not lead to the immediate identity of the subject.
"Let's show it to him," she says.
We do and Ryan loves it. He will frame it and keep it on his desk at work when he returns. Others asked me to draw their caricatures. As I do, my soul soars as I enjoy the fun and recognition of discovering a new talent.
One night I meet Sonia, a crazy Brazilian from Rio de Janeiro. She is an RT who is going to help me get off the ventilator. She is well respected, even the doctors confer with her about how to best proceed. My doctor describes his plan for going forward and leaves the room. Sonia then proceeds with her different plan.
I have tried to get off the ventilator once before and it was a trying experience. I later caught pneumonia and had to return to the ventilator for a season. I share some of my concerns from my last experience transitioning from a ventilator to Sonia and she smiles and tells me not to worry about a thing. We are going to do it her way. We will be successful!
Sonia and I begin this great new adventure. As she starts to do things her way, I find being mischievous with her, so to speak, is fun and makes it easier. The doctor wants me to take it slow meaning we add one additional hour off the ventilator after a few days at one particular level. I am having great success and Sonya says we are accelerating her plan. We go for two hours the next day. Three hours a day after that. Four hours the following day. Six hours a day after that.
My doctor comes in for a visit to see how I am progressing. He is standing at the foot of my bed. While I'm talking to him the valve from my tracheotomy shoots out from my throat, flies across the entire length of the bed, and almost hits him in the chest. He is impressed! From now on we are doing things Sonya's way with the doctor's blessing and encouragement. Due to the encouragement of Sonya and so many others, I got off the ventilator faster than anyone expected. My soul soars higher!
Kate, one of my PTs, has a reputation for working with patients very hard and with success. She is all bark and all bite in her loving, caring, and sharing way. She is working to get me up out of the chair and walking.
Each training session I use a walker to navigate an indoor track supported by an overhead harness. As I improve my distance walking she adjusts the harness for me to carry more of my weight. After many training sessions, we are ready for my big test to show my progress. The only problem is that my test date is the first day of Kate's weeklong vacation. We are both brokenhearted that she cannot be with me to participate in my anticipated test success story.,
Kate turns to me and says," Don't worry about it."
I'm not sure what she means.
On my test date, Kate comes in on the way to the airport, and does the test with me! With her encouragement, I smashed my old personal record in distance walking.
We quickly celebrate together and she dases out the door to the airport. What kind of person does this? A soul mover does!
Matt and Kristin, two PTs, help me into an exoskeleton that allows me to walk without being attached to a harness or any other device. This allows me the freedom to roam the halls, ride the elevator, and visit my room where my exhausted, sleepless wife grows less grumpy as she rests during my workouts. Walking up to her in my exoskeleton and seeing the surprise, joy, and pure elation on her face stirs my heart as I burst into laughing. I am walking to my bride and the hope in us shines brightly. My wife becomes the cheerleader she always is, jumping up and down with glee!
I often wonder how we can change the world for the better. I do not know the complete answer but I find the beginning of it is using the example of all the people at Shirley Ryan Ability Lab.
They say God shows himself when we experience truth, beauty, and/or kindness. I continue to experience all three with these wonderful people. Let's join them in being soul movers by bringing truth, beauty, and kindness into the lives of those around us!
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