Two weeks ago, I shared a story about a profound day at work in the hospital for me. Well, I had another one today, and I need to share again how beautifully God orchestrates life.
My first meeting with "E" was one I'll never forget. A young man, only a few years older than me, and younger than all my siblings, I found E in an infusion room writhing in pain from pain in his chest. It got so bad that he actually was on his hands and knees in the hospital bed, desperately trying to find relief from the pain. I played my guitar for him, and felt completely helpless. After 30 minutes, nothing changed. His pain was 10 out of 10 still. He even had the grace to say, "I'm sorry, I just can't concentrate on the music, the pain is just too distracting."
I left his room feeling not so much like a failure that day as just ineffective. On so many occasions, I witnessed wholesale changes in a patient's body from the addition of live music in their space. We all know music affects our mood, but I really work with patients to understand how music affects the body. Well, not on this day.
That was a couple of months ago.
In and out of the hospital and the infusion center, I would bump into E, and he was always quiet, polite, shy, even. We never really connected or hit it off musically, but there was a polite awareness and mutual respect present.
Fast forward to last Tuesday, and E's condition has deteriorated. He is now intubated and sedated in the ICU. I look at his IV pole, and see the familiar names that kept Bella sedated in the same setting just over a year prior. Every IV pole I see with "Midazolam" on it reminds me of Bella. I meet his mom for the first time. She is a strong-willed, confident woman, and we talk for quite a while. I explain that even though her son is sedated, his ears are still processing auditory signals, and I tell her that I first met her son in the infusion center 'on that fateful day.'
She then proceeds to tell me how her son told her how some man came into his room while he was in that most excruciating pain and played his guitar for him. She was very kind to say this; I thought I had been wholly ineffective that day, but at least he remarked at the experience even if it didn't take away his physical pain.
Turns out E loved the beach, and was able to take one last outing down to Newport Beach to hear the waves and grab his favorite, "Perry's Pizza" just before being hospitalized this time around. So, I grab my trusty ocean drum, hand it to mom, and ask her which instrument E would prefer hearing over the waves: guitar, ukulele, or native american flute. She says guitar, so I grab my guitar and improvise a meditative, arpeggiated rhythm while she created the waves with her drum. The tears flowed down her cheeks as she balanced the drum on her lap with one hand, and held her son's hand with the other. It was a beautiful sight.
Thursday, I return, and E is a little less sedated, can make eye contact, and nod appropriately to commands or questions. E nods that he remembers me, and that he remembers "the jam" mom and I did on Tuesday, so mom and I do it again. Again, the tears flow. Tears of pain, tears of anguish, tears of release, of catharsis, of joy, of reminiscence... all of it. I affirm the goodness of those tears. You could just see the stress flowing out of her.
Today in rounds, I find out that E has taken a final turn for the worst, and that a family meeting will be held later in the day to determine the next course of action. The Palliative Care Team agree that I should go and see mom and E after the meeting. Before I go in, I see my colleague, the amazing Dr. Liao, and he informs me that mom is going to take E off the ventilator tonight and let him go. The team will keep him sedated and comfortable, and he will peacefully join those before him in Jesus' arms in heaven. That decision had just been made.
I gown up and enter the room only to hear a nurse trying to tell mom to stay strong.
"I'm feeling anything but strong right now," was mom's reply.
I walk in without saying a word, smile, and walk toward her. She recognizes me after a second or two, and simply walks up to me, and in a tear soaked hug, collapses in my arms.
No. words. Necessary.
After a second, I affirm and acknowledge her incredibly difficult decision, and then it happened.
I quietly told he that I had stood exactly where she was standing as a parent just over a year ago.
I looked her in the eye, and told her she was going to get through this.
Within a minute of this, our amazing chaplain Joe walks through the door. This is a true human 'being.' Chaplain Joe's demeanor is so peaceful, he doesn't need to 'do' anything. His 'being' is immediately comforting to anyone that shares space and time with him.
I never told Chaplain Joe my story, and now wasn't the time, but as he and I sat with mom, she barraged me with questions of faith. Was I able to keep my faith? Did I still talk to God? I just shared my experience with her as honestly and in tiny tiny chunks as possible for her. The truth? I took it in the teeth regarding prayer, but my faith never wavered, and that is exactly what I told her. I simply said that my faith is not based on circumstance, so it can't be touched. No one can make me believe, and no one can take my faith away... it's genuinely mine... a gift I gave myself.
We continued to talk, all the while Chaplain Joe quietly listening and affirming. She took a call. Her boyfriend arrived, Chaplain Joe prayed, then left. After her call, I gave her the ocean drum one last time, and her boyfriend a rain stick. This time, I played guitar again, but this time, I played...
His Love is Everlasting,
and I played my best for him... pa-rum-pa-pum-pum.
Then something else happened.
When the music was over, I quietly put away my guitar and the rainstick, walked over to mom, knelt down in front of her chair, and asked her if she would like to keep the ocean drum. I explained how memory works in the brain, and that in the grief journey, the pain will subside, but the memory of this time will remain, and that she can go to the ocean with E any time she wants to simply by playing her ocean drum.
I have another one in my closet. It gets played maybe once or twice a year. Now, it'll get played every week at the hospital. Ali cried when I shared this story, because it's her favorite instrument of mine, but I explained we are blessed enough to get another. She loves the fish! It really is a great instrument, and I just felt like it was the right thing to do.
Think about it.
God put me in that room with her on repeated occasions leading up to today, so that another caring parent who'd lost a child could be with her in that very moment... unbeknownst to everyone involved, save me and God.
Once again I say, "Well played, God. Well played. You are the master conductor; the only one who can see the entire musical score. Those of us who can trust the direction of your baton create often times beautiful music with you. It's when we don't follow the baton that dissonance occurs. Thank you God for orchestrating ALL OF IT so that I could be your messenger of hope and peace to E's mom on this very day."
She told me that she had been out of his life for years, only to return just before he was diagnosed with cancer two years ago. I remarked that it seemed completely providential, and that perhaps the entire reason she was brought back into his life was specifically because of his cancer. E got his mom back to be by his side through the scariest, most painful, and final two years of his life. She was there on his first day, and she was there on his last. What more could a kid hope for?
Go be an instrument of God's plan. Follow His lead, and make beautiful music together.