As a child I couldn’t comprehend how vastly it had changed my life. Before I could grasp what living meant, I faced my death. But, I didn’t really know it. I simply succumbed to the consequences of the ugly disease and then the horrific treatment and finally to the life-altering side effects. None of this was pretty. It mangled my body, my childhood, my adolescence, my family, my future. Nothing remained untouched.
Childhood cancer is an ugly cancer. You don’t ever get over childhood cancer. It changes you before you can even define who you are. But, you learn to fight, to persevere, to adapt, and to look at life through realistic lenses. If you, as they say “beat the disease” after it has thrashed you and busted you up, you live your life knowing that death is certain, yet confused because no one can tell you how much longer you have to live.
You become intimately acquainted with pain and suffering. You know what it is to be seen with curious and hurtful stares and hear insensitive and unkind words. You know what it is to ride on IV poles and scream at thumb pricks and cry out from a desperately lonely hospital bed in the middle of the night for your mom and dad who were kicked out of your room when visiting hours were over.
When the side effects of the treatment send you back to the operating table time and time again, you lay yourself down to keep on fighting to live.
When you run out of all options but one, you take that one fighting chance and you hold on to it tightly.
When the surgeon unzips you and peels back all the layers down to your failing heart and digs around all the cemented scar tissue from thirty-five years before and uses everything he knows to rebuild your heart and you barely make it off the table alive, you wake up not knowing how to go on any longer.
For my whole life I had been trying to figure out how to actively live. When my cardiologist told me to stop doing everything so I could keep on living, I faced my own mortality. Being a good doctor he didn’t give me statistics or tell me exactly how long my heart would keep on pumping because he didn’t have any statistics and he didn’t really know.
When my heart surgeon told me he would do everything he could to help me get back home to my family, I knew he wasn’t making any promises. Being a wise surgeon he didn’t give me statistics or false hope.
Being told your heart is failing and living through open-heart surgery is life-changing. Many times I was a hairbreadth away from my last exhale. I wasn’t afraid of dying. But, for the months I lived in ICU, I became terrified of living.
This world is a cruel place when you are teetering between life and death. It is hard work to live when a machine is keeping you alive. This world has nothing to offer when you are longing to be with Christ. Our living at this point is only for the benefit of those we love.
Facing mortality helps you to live more fully. Fighting to live when life is so frail entices you to welcome death. When you don’t know how to go on, there is one thing to do, keep going on.
Being healthy is prized in our society. Sickness is repulsive and for the weak. It makes people uncomfortable. I know how awkward it is for people to come sit with you in a hospital room when foul odors linger with pungent antiseptic. It is terrifying and confusing because we all know death is certain for anyone living. It is offensive and out of place when you should still have years of living.
It is even more uncomfortable to visit with someone who is broken in mind and spirit. We get frantic when left with the mere shell of the person.
We are all looking for purpose. Trying to figure out what our living is all about. Some of us are afraid of dying; some of us are terrified of living. The thing is none of us are very honest with each other or with ourselves.
I want neatly packaged answers and I keep unpacking hard to understand problems.
As joy is God’s grace recognized, living with joy is possible even in our suffering. I only see it that way if I believe in God’s sovereignty, and that His providential hand will bring all things to pass to complete the work in me that He has begun.
It appears to many as though I have recovered. I am back to my family, back to a full schedule and actively living. The reality is, you don’t ‘get over’ a diagnosis and disease—you may live through it, but you come out changed. So changed you don’t even know who you are anymore. And once you think you have it figured out, you discover you don’t, so you keep on looking to recognize God’s grace even in the pit of confusion and valleys bleak with shadows.
I strap on a breathing machine every night and power up the ventilation treatment for whenever I sleep. My body is still frail, my breath still short. The sobering thing is, this is as good as it is going to get for me on this earth.
Many days I wake up and wonder how I will go on. But, I will. I will keep on searching what living really means until one day, the day God has planned for me, when I won’t. For now, to live is Christ. That day, to die will be gain.