LOSING PIECES OF MY HEART

“I am fine.” The three little words softly slipped from his lips in response to my “How are you today?” To him it was a simple response to a question, but to me his response slammed into my heart with the impact of an eighteen-wheeler at freeway speeds. I had heard those words before. Those same words, spoken with that same accent (“I am pine”) and same meek delivery. Same words, similar context, different person. Same impact. Those words haunted me, and I didn’t realize it until that moment. Before the last syllable hit my ears I could already feel my heart start to shred, a lump rise to my throat, pressure build behind my eyes, and every will within me fighting back the thoughts “No you’re not. You are not ‘pine’.” Because that is not how a therapist is supposed to react to their patient. We are supposed to see their potential and facilitate their ability to see and reach that potential.

I never knew the name of the first young man to speak those words to me, but I’ll never forget his face or the impact of his three little words. I wrote about him on my first trip to India as an OT student. I was a green OT at best and without any ideas of where to even begin with his care. I turned the other way. I was left heartbroken and questioning the “fairness” of life.

I have had the privilege of getting to know the young man who spoke those three powerful words to me this week. I know he is 29 years old and was in a motor vehicle accident a few years ago that left him with a C6, ASIA C (incomplete) spinal cord injury. There is more to his story that grieves my soul but is not necessary to share. His spasticity is intense, debilitating, and has been preventing him from being remotely independent for anything in life. He will be discharging from therapy soon to return home with family who will share responsibility of his basic needs. They will transfer him from bed to wheelchair. They will feed him, bathe him, dress him, and keep him alive.

With a US perspective prevalent in my OT practice and six years of experience with spinal cord injury between the me of yesteryear who first heard “I am fine” and the me of today, I can see a glimmer of what life for this young man could look like if his resources were different. I believe his spasticity would be approached differently; whether it would be better, I cannot say. At a minimum, he would have a power wheelchair to improve his independence with mobility. This US perspective hinders me here. It does me no good to imagine what his life could look like if only… I’m not a Fairy Godmother. And if I was, my magic wand is certainly broken without chance of repair. However, my few years of experience has taught me to not walk away.

It is my understanding that the incredible therapists here have worked long and hard to improve his sitting balance and posture as well as improve elbow extension and triceps strength. He has made gains, but they have not translated to functional activity. The tone (muscle tightness and spasticity) in his hands prevents him from using them functionally. My goal for our therapy session was to address hand function. Somehow. I didn’t know how I would approach the task, or even what my intended outcome was, but I desperately wanted a win for him. I wanted him to be able to do something independently for himself, even a small task. Perhaps I needed the win more than he did. I needed to know there was hope.

I was able to get my hands on a precious role of therapy tape and taped his finger extensors under tension. I started with his left hand and immediately he was able to use tenodesis (wrist movement to control finger motion) to grasp a ping pong ball from my hand and place it in my other hand. Movement was slow due to the tone in his elbow, but he was successful. I had him grasp his water bottle in his left hand only and take a sip. It was slow and precarious, but he took a sip without spillage. I excitedly taped his other hand and we (the OT and I ) asked his attendant to go get us a bag of chips. When the chips arrived, he began to eat them one by one without hesitation. He was feeding himself for the first time since his injury. He was independently eating. He may never be able to eat dal or sambar. He may never be able to tear his own roti, but he can feed himself finger foods.

I’m not likely to know how he truly feels about his success. I don’t speak his native tongue and he only broken English. I rely mostly on facial his expression and eyes to read his emotions, yet his face maintains a gentle smile at baseline and little in his world seems to change that. Over the past two days he has grown increasingly quiet and the light in his eyes seems to be only a cooling ember of what was once a spirited fire. He speaks very little, even in his own language and when he does it is quiet and reserved. Perhaps that is why I wanted a win so badly… I thought maybe some measure of independence in life would be the bellows that converts that ember into a flickering flame. His response to our success left me wondering if we had achieved that or not; my experience left me knowing I cannot force anyone to change.

The following day I found myself reluctant to treat him. I was disappointed by his unchanged affect the prior day. I didn’t know if I could spend so much time and energy fighting his tone and battling his dimming gaze. To be honest, I didn’t know if my heart could handle it. But he had shown up ready to work, and if he could so could I. And so we did.

One of the first things I noticed when my eyes first met his gaze was that his immediate reaction was a huge smile. Perhaps today would be different after all… I hesitated to hope, but I couldn’t quiet stifle the rising feeling in my heart. As we worked together for nearly two and a half hours on transfers, weight shifting, lateral movement in tall sitting, tenodesis gasp/release, stretching, and push-ups I noticed his smile appeared more frequently. I’m not sure what I said, but I even got him to laugh—a dramatic change from the day prior when one-word responses was the best he could deliver. Today he looked me in the eye and said, “listen to me, I will speak to you” as he offered to translate for another patient. (Ha! He knows more English than he let on!) Maybe I was imagining it, but the light in his eyes seemed brighter today. We all have our good days and bad days, and I won’t pretend to take credit for his change in affect. I’m just glad that our last session together was full of successes, awkward quad fist-bumps, smiles, a laugh, and more words exchanged than ever.

What he will likely never know is the impact his three little words and small successes have had in my life. His words that morning tore my heart apart. But his determination to keep working with the crazy OT in front of him and the successes that resulted was a sweet balm to the wound that was ripped open that morning. I learned that when my clinical skills seem to fail the situation, my compassion towards my fellow man leads me to meet them where they are at, in their hurt, and carry on. There is always something that can be done. That “something” may not be life- changing, or even of much significance. That “something” may be sitting together, unable to communicate with words, but simply being there and being willing to “do” in order to create a positive impact.

I will never know if my impact was all that positive or whether it will stand beyond that moment, but I know that if I had chosen to do nothing when the challenges seemed insurmountable we would not have been able to share those brief moments of success, the smiles, and the laughs. I will always be grateful to this young man for letting me be small part of his life and for etching beautiful life lessons on what remains of my shattered heart.

** Permission to share his story and his photo has been granted by the patient in writing. **