WHEN MEDICINE CAN’T SAVE US

... there will come a point in each of our lives when medicine will fail us, but we don’t need to fail each other.
— Christopher M. Jones Mitchell's Journey

Mitchell’s neurologist, the same doctor who diagnosed him at the age of 3, came to the Cardiac Intensive Care Unit to say hello to our son. Except, she wasn’t really coming to say hello; she came to say goodbye – for she learned Mitch had end-stage heart failure and cardiologists thought he had days to live. 

This good doctor had a reverence about her as she set aside her degrees in medicine and practiced humanity. My heart swelled as I heard her speak softly to our little boy. She was kind and compassionate, even when she didn’t need to be. We were not even at her hospital, yet she went out of her way to be human. By stark contrast, a different doctor who denied our son a heart transplant was visiting other patients right next to us. Our son was dying and she never said a word to us; she walked by us as though we were ghosts. Imagine the deep psychological panic we felt when we saw other patients receiving life-saving treatments right next to us, while our child was denied help and hope. I wept so hard that night I nearly passed out from exhaustion. 

I’m not angry at that doctor for being so impersonal, nor am I angry with God that my son was called home. I am sad. Sad beyond all description. But I am not angry, for anger is a toxin that destroys us from within. 

Little Mitch looked softly into his doctor's eyes as she leaned in and said tender things to him. Dr. Kerr didn’t know, at the time, what her visit meant to my son. This was not a billable visit. Insurance wasn’t going to reimburse her travel. Instead, she came on her own accord because she remembered why she practiced medicine in the first place. She was then, and remains today, the personification of The Child First and Always.

Later that night, Mitch told me how much he loved his doctor and how special her visit made him feel. I can only hope that during those moments when my son was slipping away, he remembered the good people in his life and the love he received. I hope that brought him comfort. I hope it brought him peace.

It occurred to me during this tender exchange between Mitch and his doctor that there will come a point in each of our lives when medicine will fail us, but we don’t need to fail each other. We are all mortal and death is our inheritance. 

Though we cannot stop death, we can help each other along the way. When someone’s time has come, we can, like this good doctor, love them and offer comfort. When medicine can’t save us, we can offer love and compassion, and that is medicine for the soul. 

WHAT HAPPENS ON THE OTHER SIDE OF MEDICINE

Mitch lay patiently on the cold hospital bed as the medical technician began to record his heart function. I saw my son’s countenance drift to some far-off place and it seemed as though he were contemplating heavy thoughts; the kind of thoughts elderly people think at the twilight of their lives. Here was a young boy who should have had a lifetime ahead of him; instead, an invisible monster in his body was devouring his heart. At this point we knew his heart was failing, but not even the doctors knew how quickly things would unravel.

It wasn’t until this moment I realized Mitch sensed something was happening – and that something was not good. From the day of his birth I had a strong impression he would have a short life. But now Mitch was beginning to sense the same thing. He didn’t like going to the hospital for tests, but he bore that burden patiently. He didn’t like that his muscles were getting weaker and that he couldn’t play like healthy kids, but he carried that burden with a grateful heart for the things he could do. My little son has shown me how to bear my burdens patiently. I am not as good at it as he was, but I’m working at it. 

I often wondered if those working in the hospital ever thought about what happened on the other side of their hospital doors. We go in sick, and if we’re lucky, we leave recovering … and alive. These professionals see a constant stream of broken bodies and I am sure that is numbing – but I wonder how often they pause for a moment and see broken souls. It doesn’t take much to bandage that, too. 

With few exceptions, almost all of our doctors were both professional and human. They were cardiologists, but they were also fathers. They were nurses, and they were mothers too. I always appreciated the medical professionals who attacked a medical problem with clarity and vigor but remembered there was a frightened child and trembling parents who just wanted one more day. As patients and parents, we don’t need our doctors to be pseudo-psychologists, we just needed to know they care – even if only for a moment. 

We left the hospital this day a little shaken up; afraid of the future and unsure of what was to come.

As we were walking out of the hospital Mitch said in his soft voice, “Dad?” 

I turned to him, “Yes, son?” 

“Can I go to work with you? I just want to spend time with you.”

My heart fell to the floor, “Of course, Mitch. I love to spending time with you, too. You can sit at my desk and play Minecraft, help me file some papers and organize my drawers. Then we can go to the Olive Garden for lunch.” 

Mitch smiled and I smiled back, then I turned my head and wiped the welling tears from my eyes.

And that is just what happened. Mitch went to my office the next day and we spent time as father and son. Time I will never forget. Time that, in retrospect, was more valuable than all the treasures of earth.

In a few hours Natalie and I will speak at the University of Utah School of Medicine and share Mitchell’s Journey. There we’ll offer a candid look at what happens in the lives of those who fight for life and eventually lose. We hope to lift the curtain a little on what happens on the other side of the practice of medicine – so that when they are tempted to rush patients through a system designed to fix bodies, they might pause a moment and remember. Remember little boys and girls, like Mitch, who are frightened and in need of hope and a kind smile. For compassion is a kind of medicine, too.

AT THE HEART OF THINGS IS EVERYTHING

Mitchell’s cardiologist placed a stethoscope gently on his chest. Suddenly he closed his eyes and disappeared into a state of deep meditation as he listened closely to the fumbling, tumbling sounds of our little boy’s failing heart. There wasn’t much time left and this doctor knew it. Unaware of his fate, little Mitch just wanted to go home. At the end of the day, I believe that’s where our heart yearns to go. Home. Back to that time and place where we felt safe and surrounded by the ones we love. 

Just a few days prior this same cardiologist, fighting back his tears, told us our son only had days to live. This good man spoke to us as a medical professional first and as a father second. The doctor in him told us the medical truth bravely and unfiltered – which we wanted and desperately needed. The father in him told us what he would do if he were in our situation. As far as I’m concerned, he practiced perfect medicine – for he was professional and human.

I cannot get this image out of my mind. I have many such photos of this doctor performing this same act of listening to my son’s heart – each time with the same degree of intensity. 

In this image is a metaphor that I can’t put away. Little Mitch once said to me while dealing with a hard thing someone had done to him, “Dad, if you see with your heart, you see everything that matters.” Mitch instinctively knew that old adage “hurt people, hurt people.” Someone was mean to him, yet he didn’t see a mean person, he just saw a good person who was broken and hurting on the inside. Listening to the heart and soul sometimes takes just as much focus and intent as this good doctor applied to my son’s physical heart.

I don’t know that I’ve ever shared this, but my son was named after a dear friend of mine who unexpectedly passed away several years ago. One night, over 20 years ago, my friend and I were in the heart of Kentucky. I remember that night like it was yesterday … the sky was clear, the stars were bright and there were fireflies nearby. We were talking about things that changed us from the inside out. We were only 19 and 20 at the time, but we had already experienced a change of heart that was significant and we were sharing our experiences. He shared with me something that changed everything for him. In high school he was rebellious and did everything his parents told him not to. One night, well after midnight, he smashed through the front door drunk, high, and belligerent. He then passed out and fell down the stairs and on to the basement floor. The next thing he remembered was his father holding him at the foot of the steps, weeping and telling his son how much he loved him. It was his father’s act of love and compassion that changed my friend for good. When Mitch told me this story, we both wept and discovered a spiritual truth. 

Over the years, time and circumstance created distance between us. We attended different universities and our lives did as they must … go on. But I never forgot my friend. So, on that fateful day my wife and I had our 3rd child, we named him Mitch because of what this good man taught me about love and compassion. I finally reconnected with my friend a few years before he passed and told him how we named our son after him. He was humble and kind and I was reminded of the kind of person I hope to be.

I wonder how the world might change if everyone started to see and listen with their hearts. That’s not to say we become illogical and foolish, driven to-and-fro solely by emotions; but how might things change in our own lives if we truly listened to the intent of others? I can say with confidence that almost every single conflict I have been a part of stemmed from a misunderstanding of the heart. Most people aren’t bad, they’re just a little broken and don’t know what to do with their jagged pieces. 

It is my experience that people change because they are loved, not because they are shamed. I hope to follow my son’s example and see (and listen) with my heart – for when I do, I see everything that matters. 

That’s what Mitch taught me … at the heart of things is everything. 

NO EXIT*

Laura-Ashley had taken Mitch on a stroll down the hall while we spoke with the transplant team. By the time this photo was taken, we had already been told the devastating news – Mitch would be denied a heart. I remember this moment well. I sat across from Mitch and listened to his sweet voice talk about a video game he wanted to play. I struggled concentrating on his words; for while my son was focused on youthful things, I was weighed down by mortal things. The prospect of certain death weighed heavy on my shoulders.

Later that night I posted this video about our experience: vimeo.com/54167124

I entitled that video “No Exit” because for my son, there appeared no exit … no way to escape the catastrophic muscle wasting of Duchenne Muscular Dystrophy. No way to escape death. While our son’s cardiologist presented transplant as an explorable option, I realized quickly the decision had been made long before we arrived. So, I was confused why we were there in the first place. 

I tried to hide my anguish from my son and hid my sorrows behind a fading smile. I kept it together – but Mitch knew me and sensed something was wrong. Later that day, Mitch asked me, “Dad, what are you thinking?” I said, “Son, I’m just thinking about the value of time and how much I treasure every minute I spend with you.” Mitch smiled and said, “I like spending time with you, too, Dad.” With that, he turned and skipped down the hall in his funny way. I turned my head and wept.

A few months later, I would see this same transplant team walking about the cardiac intensive care unit rushing to the aid of other children who qualified for a transplant, while my little son lay in the same unit sentenced to death. Imagine the heartache, confusion and desperation we felt – then magnify those feelings a million-fold. That, then, will represent only a grain of our sorrow. 

I asked attending doctors about an LVAD and they uniformly told me that wasn’t an option. It wasn’t until Mitch was home on hospice we heard from Pat Furlong at Parent Project Muscular Dystrophy who offered to help get Mitch an LVAD. For reasons I will detail in future posts, and in greater detail in a book, the promise of hope was dashed by a series of heartbreaking realities. The hardest reality of all, there was no exit.

It was only a few months after Mitch passed that I was asked to speak at PPMD’s international conference about our experience. A few doctors in the medical community told me how angry they were that Mitch passed away – but after hearing my address about my son, they realized Mitchell’s purpose (at least one of them) was about something much more – and their hearts were softened. 

Anymore, I’m not afraid of death. In fact, in times of deep grief I have wished for it. But I also value life and the hope it offers. Though I have traveled broken roads of grief and sorrow, I have also discovered wells of peace and healing. It is not all terrible. I worry less about my earthly exit and more about how I exit. 

The hard reality is none of us exit this life alive - and that is what mortals misunderstand. We confuse death as the end - but it is not. It is a return to our previous state. Death will come to each of us … and for most of us, we will see our loved ones go before us, some will even suffer greatly before they go. But everyone goes. Our hearts will be broken - sometimes more often than we think our hearts can handle. In our loss, we will long for the companionships we once enjoyed; Heaven knows how I ache for my son's hand. 

The point is, sorrow will become familiar to each of us - and it will become our teacher or tormentor. In the end, we decide what meaning suffering has for us and whether it breaks or builds us. 

This photo was taken almost exactly 3 years ago. It feels like yesterday, yet at the same time a world away. I have experienced so much sorrow and self-doubt between this moment and today. But I have learned a great deal and I'm not about to throw that away. That is what my son taught me ... I have today.

 

LITTLE MERCIES

Baby Marlie waddled up to Mitch and begin to kiss his face. The chief cardiologist allowed her to be smuggled past security so she could perform some puppy therapy. It worked every time.

This little boy and puppy had only met about two weeks prior and were already the best of friends. To look at video footage of these two reveals something that was hiding in plain sight; though she was a baby pup herself, she seemed to recognize something was different with Mitch. She treated him with a tenderness and care that was unique and startlingly obvious. Almost maternal. The circumstances of adopting this puppy were heaven-sent, and I’ll write of that another day. But one thing was clear: this little dog was on a mission of mercy … and not a day passes that I don’t thank my Father for it.

Until that sacred evening of my son’s passing, this little dog played an important role in comforting my son. This little puppy was a tender mercy to our boy. Today, Marlie serves my dear wife, who has a broken heart of a different kind. When Natalie is especially sad, Marlie seems to notice, just like she did with Mitch, and makes a visible effort to comfort her. Often, I can’t help but cry tears of gratitude when I see the little mercies in my life and in the lives of those I love.

Tonight, as I lay my head to sleep, I will greet the night unafraid ... my heart overflowing with gratitude. Gratitude for the little mercies and the big ones, too. For we have a Father who cares about the little things - evidence He loves me and you.

BUT IF NOT

Mitch lowered his head into his lap, tired of hospital visits and anxious to go home to his friends and family. My son looked to his future with youthful enthusiasm; yet, what he thought was a beautiful sunrise on the horizon of his life was in reality, a darkening sunset. As his parents, we knew time was running out … we saw the sunset but didn’t want to frighten our son. So, we just held him and loved him the best we knew how and kept that terrible reality from his tender mind as long as we could. Medicine was failing us. Medical bureaucracy and antiquated transplant policies failed us. We hoped and prayed something might slow the destruction of his heart from DMD – but such was not the case. Last minute interventions were too little, too late.

I suppose there are a million and one reasons I could be angry with people, medical systems and God for all that has happened. But I am not. I am only grateful. I am grateful for what I did have; for I had a chance to love my little child for 10 amazing years. He became my friend and I became his student. Though I was his father, he taught me more than I ever hoped to teach him.

On my son’s journey through life and death there were many times I cried out in my mind and heart, “Oh, Father, this hurts. Where are you?” After my son passed away, my world darkened by a veil of grief and sorrow – such that I wondered when the night might end. I wondered if it would ever end … for I had never known a darkness so pitch. A grief so heavy. Behind my smile was a broken, weary soul stumbling over pebbles.

Two years later I can say with confidence the darkness fades and strength returns. In fact, light and life return. That is not to say I am over grief - because I’m not. Some days are as dark with sorrow as any day I’ve ever known. Grief is a chronic condition that I’m learning to live with. Yet, I’ve learned to carry grief in ways that won’t injure other parts of me. For that I’m grateful.

The question I hear over and over from others on Mitchell’s Journey is “Why?” I’m not sure it’s entirely possible to know why we experience what we do. When hardships come some people get swallowed up in rage and self-destruct. Others blame God for their suffering – as though they should be the only human exception from pain and sorrow. And there are others who insist a loving God wouldn’t let us hurt – therefore He must not exist, or that He is cruel and unkind. There are so many ways to look at pain and suffering. So many ways to learn from it, or run from it.

I shared this in an earlier post: “Whether we settle the question ‘Is God the author of our suffering?’ or not, is immaterial. If our suffering is caused by other means … be it our own poor judgement or the bad choices of others, or perhaps our suffering is just a result of life in motion … the fact of the matter is God could stop our suffering if He wanted to. That He doesn’t sends the most important message of all.” 

There is an ancient account of three God-fearing men who were to be thrown into a fiery furnace if they didn’t denounce their faith before an unscrupulous king. They boldly replied they would not. They also told the king (Nebuchadnezzar) that they believed God would protect them, but if not, they would remain true. 

But if not … those are easy words to say in Sunday School, Shabbat, or from a pulpit or stage. It is only when we utter those words in our own wilderness of afflictions that the true lesson and test begins. What I’ve learned is we cannot escape hardship: but we can learn and grow from it or we can revile and shrink because of it. I will not shrink.

I believe life is hard because we are meant to become strong as well as good. Despite my heavenward pleas to spare my son, a little boy I loved with all of my heart, I now find myself on the other side of that phrase “but if not.” What I do next with my reality matters. I can shake my fist at the heavens in anger – but that won’t change heaven, it will only change me … for the worse. Or, I can take a knee and plead for understanding and wisdom. I can pray for a soft heart and discerning eyes … to see past mortality’s deceiving guise. For when I hear the terrible ring of death’s loud toll, I am reminded to worry less about the body and more about the soul.