There is a phenomenon that comes with amputation called phantom pain. The pain is rooted in the body’s nervous system, the body’s memory of the amputated limb or heart as in my case. My body ‘thinks’ that my heart is still there even though it isn’t. This phantom pain is not so much pain as it is an ache: intermittent and unpredictable.
I must confess that I’ve come to befriend it as a sweet, tender reminder of my native, God-knit heart, the heart that died on 04/21/2008.
In the days immediately following my transplant as I was slowly emerging from layer upon layer of sedation and paralytics, I began to grieve. Not only did I grieve the death of my donor, but I also grieved the death of my God-knit heart, the heart that was all a-flutter on my wedding day, the heart that lulled our son to sleep in utero, the heart I’d known my entire life.
Through the years, I have found it difficult to put into words what it is like to have yiur heart amputated; however, there is a quote from ‘Atlas Shrugged’ by Ayn Rand that captures the impact of the death of my heart on me, my heart-soul, my life.
“The great oak tree had stood on a hill over the Hudson, in a lonely spot on the Taggart estate. Eddie Willers, aged seven, liked to come and look at that tree. It had stood there for hundreds of years, and he thought it would always stand there. Its roots clutched the hill like a fist with fingers sunk into the soil, and he thought that if a giant were to seize it by the top, he would not be able to uproot it, but would swing the hill and the whole of the earth with it, like a ball at the end of a string. He felt safe in the oak tree’s presence; it was a thing that nothing could change or threaten; it was his greatest symbol of strength.
One night, lightning struck the oak tree. Eddie saw it the next morning. It lay broken in half, and he looked into its trunk as into the mouth of a black tunnel. The trunk was only an empty shell; its heart had rotted away long ago; there was nothing inside-just a thin gray dust that was being dispersed by the whim of the faintest wind. The living power had gone, and the shape it left had not been able to stand without it.”
I had always felt safe in the presence of my heart; I trusted my heart implicitly. I was confident in its ability to sustain my life despite the chemotherapy and chest radiation I’d received as a child. Even though my heart sustained damage, never once did I think that my ‘greatest symbol of strength’ would be shaken, uprooted, split it half, devoid of ‘living power’. The question that has loomed large in the early years after the transplant was would the shape, the shell, the person be able ‘to stand without it’.
To be completely transparent with you, I wasn’t sure I would be able to carry on. Like the storm that uprooted Ayn’s well-established oak tree, heart failure had a white-knuckled grip on the physical core of my being that ultimately brought about its death ravaging my body and wounding my soul.
Shortly after the transplant, I journaled a list of adjectives describing how the death of my heart made me feel: empty, reduced, heartless, diminished, less than, incomplete, lost, purposeless, unlovable, unlovely, cored.
I felt numb, almost dead to myself. I was angry that a life had been lost, that my heart had not been healed, and that the person I once knew was forever changed. It took years and a lot of extremely difficult soul work for me to embrace my new heart as my own and to believe that I could be whole again.
Our son was instrumental in my healing process as I slowly stepped back into my role as his mom. I spent hours observing him, allowing him to get to know me again, and awaiting an invitation to re-enter as his mom.
I rejoiced that his joy, his laughter remained pure, untouched; his heart, seemingly unscathed; his faith stronger than mine as he had watched his mom walk through the valley of the shadow of death with an unwavering belief that I would recover, I would live.
Persevering in praying that his mom would be able to speak and give hugs again. Oh, how I wanted to scoop him up, hold him, rock him, tell him how much I loved him, but I was helpless to do so for SO long.
It was heartbreaking, spirit breaking.
Not too long after our return to Atlanta, I was watching him play, and I was overwhelmed as I realized that my heart lived on in him.
He carries a living remnant of my heart, literally.
A singular revelation that broke the chains that were keeping me from calling my donor’s heart my heart; a revelation that freed me to let go of my anger, to begin the process of living, of falling in love with my life again.
Grieving the death of my heart wasn’t a series of ordered stages completing one before moving to the next one. No, it was an unrelenting hot mess: one step forward, two steps back. The end game wasn’t to get over it though many placed that expectation on me.
The reality was that part of me died. You don’t get over that. In fact, you can only hope to incorporate the loss into who you are and who you will become.
The loss is always present, and I will forever miss my heart beating within my chest. We’d known one another for 38 years; we had history, and it hurt deeply, daily. Thankfully, with the passage of time and the joy of watching our son grow into a young man has come healing as his heart is strong, healthy, life-sustaining.
He is my heart outside of my body, and he carries it within his chest. It’s a picture of redemption, the redemption of my God-knit heart. I give thanks for the way he, his life has ministered to me in the years since the transplant.
Today, I give thanks that I view myself as whole, complete, always enough and never too much, lovely and lovable, capable, intentional, and on purpose. The grief has subsided though the phantom pain comes and goes, a sweet reminder of what once was and continues on in our son.
And to think, none of this without my donor and her family.
Never forgotten; forever thankful.