Both Sides of the Giving Hand
A Caregiver’s Spiritual Journey
Looking back on a life, any life, one realizes the only thing we really want in the end is to be relevant. We want to be certain we have made some sort of difference. We want to feel secure in knowing our legacy will not simply vanish with our body as we pass from the planet. This universal longing is at the core of being human.
My choice of career in healthcare, specifically physical therapy, was grounded in this desire to be relevant. Of course I did not realize this at the time I made it. I was completely unable to see the real motives through my own altruistic mask. Moving constantly as a competitive gymnast, a straight-A student, and a chronic perfectionist, I was taught this was the proper way to strive through life. I had my goals, my plans, and my steps marked out and documented in a three-ring college-rule binder, and I never missed an expectation. School was over, a job on a spinal cord and brain injury unit secured, and I was in complete control. My life was perfect. I had become a legitimate caregiver, but it has taken decades to unravel the true magic that lies within and beyond my side of the giving hand.
I spent years perfecting my skills and achieving my goals, but did I grow? Really?
Can one grow if they do not first receive? Can a flower grow without first receiving water from the sky, light from the sun, and food from the soil? Of course not, but I still felt I was in control of my destiny. Can a human body move, work, or provide care without first taking air into its lungs? Of course not, but I stood convinced I was the giver and not the taker for this is where I found my relevance.
I moved appropriately to the world’s standard in other parts of my life as well. I married a loving and successful man, and we set out to make ourselves a family. Is this where I first began to palpate it? Is this the first time I was yanked to my knees? Was this the first realization that control over my life was only an illusion? My heart was ripped open and vulnerable. I found myself groping on the other side of the giving hand with the news of miscarriage number three.
At what moment does a heath care provider, a mother, any human being, understand the choice they have to make? This revelation comes at different times and is cloaked in different circumstances, but the choice is eventually and inevitably made clear to everyone. We are all forced, sooner or later, to stop denying and turn to face our ultimate fears – loss, disability, and death.
Our children came. They are a complete blessing and a pure gift for I had no control over their timing, their health, or their path. This was a pivotal point in my life. I had to humbly acknowledge that I was the receiver. I began to see the finite game of life through the lens of an eternal perspective for the very first time. I began to see you differently. I began to open up to the enormous gifts you possess. Through your brokenness of mind and body you acquired a strength I am just beginning to understand. Please forgive me for denying you the joy of receiving from you more fully. I now understand I truncated a mysterious circle. Through my desire for relevance and the constant movement of the giver, I neglected to receive from you. As a result, I devalued you and missed the culmination of this divine truth. It is in giving that we receive, and it is in receiving a gift that we complete the circle of joy.
I cannot pin point the time or the place. I cannot identify a specific patient or an epiphany. This has been an evolution of heart and soul. It was an enfolding that was not my doing, for it was the doing that needed to be set aside. I needed to cease in the striving for relevance, and as I did I realized relevance itself is a meaningless desire because it is lost within the judgment of the past. The only reality is the gift of the present moment. I could anguish in the guilt and the opportunities lost, or I could move forward and be a different type of provider, teacher, mother, mentor, and friend. One who has a never-ending capacity because now she is open, still, and ready to receive as well as to give.
All of the individuals I have had the opportunity to treat have knit the fabric of who I am. All I can say to you today is, “Thank you.” Though I must admit the ALS population reigns as the supreme teacher. Why? I have to believe the answer to this question lies in the current reality of the inevitable helplessness one feels as a caregiver to these patients. You have forced me out from behind my wall of relevance because I am unable to change the course you face. I can help maintain range of motion, but your muscles still waste away. I can help maximize chest wall mobility, but your respiratory function still declines. I can provide technology so you can move through life, but I am helpless to provide life to your movement. Ultimately, the profound choice to leave this broken house behind and release your soul or continue fighting is yours alone to make. You are the picture of grace in unbelievable circumstance. I am humbled by your strength, and in your presence I feel overwhelmed and vulnerable. My mind is bound tight with the thoughts of my own human frailty. Through you I have realized we are all disabled.
As humans, fear is the only real constant. In some there is the fear of losing power, position, and control. In others there is the fear of not enough resource, opportunity, and security. In others still there is the fear of complete injustice and oppression. We combat these fears by closing ourselves off, hiding our weaknesses, and building up walls of false confidences and disguises of control. In a world where we seem incapable of accepting our own weakness, how can we accept the weakness of others? Not until we become aware of our own brokenness and fear can we embrace the universality of the vulnerable heart. It is from here we will begin to receive and accept every human being as a valuable link in the chain of humanity. It is here we embrace unity.
So in the end I find my own relevance by empowering yours. I began to think it is much less about disability rights and much more about human relevance. We must stop separating the individual with a physical or intellectual limitation into some arbitrary disability category. We must become honest about our universal weakness and surrender to our inherent limitation as human beings so we can evolve in our strength as a unified humanity.
God made it very simple in His two great spiritual laws of love. You must first abide in me with everything you’ve got. Lose the ego and leave your pride outside the door, all your advanced degrees and continuing education hours mean nothing to me. I am the source of your being. I am the movement behind your breath. I am the gift you must receive if you are to have even one more moment of life. Once we realize this unity with the creator of the universe, we can be confident in our weakness. We can accept ourselves where we are without being content to stay there. Movement is life, but first we must be still, open, and humble enough to receive life.
These beliefs were solidified during a short-term medical mission trip to Hengyang China under the guidance of International China Concern. ICC is a Christian development organization who partner with the Chinese welfare system providing love, hope, and opportunity to hundreds of disabled and abandon children. The individual interactions with the children and young adults at the orphanage were powerful because of the grinding need, but in working with ALS patients I was no longer a stranger to feeling helpless against overwhelming reality. What I experienced in China was a deeper understanding of the needs of humanity as a whole.
The experience provided me a broader perspective of the concept of victim. I left China wondering, “Who is it that one prays for?” Is it the abandoned child, or the parent with no resources and no hope? Is it the person in the park with a hard heart who looks in disgust upon a child with disabilities? Is it the corrupt government officials at local levels, or is it the party leaders wrapped and warped by a godless ideology? If one embraces an eternal perspective, all are victims who are separated from the truth, from the source of creation, from love. When a society places value only on the physical and intellectual capacity of its members to give back to the whole, this society starves its heart and its soul.
We are all critical links in the chain of humanity. The truth is you are strong where I am weak. You are able where I am disabled.
Together we are complete.
We find unity in the to and fro give and take of our capacities and gifts as well as our vulnerabilities and weaknesses. As humans we must surrender to each other at the level of the heart, or we remain unable to complete the circle of joy that defines our being human. We remain a disabled humanity. We can only access this heart when we lose ourselves to the point of sharing our deepest fears. We must strip naked the ego and cast away the illusion of our independence and control over our lives. Following my trip to China, I finally possessed an understanding of these strange words of scripture, “Hold on to your life and lose it, lose your life and gain it.” There has never been a time when I felt more alive than when I had completely lost myself and was fully in your presence receiving your gifts.
This is a testimony.
This is a confession.
This is a personal revelation.
This is a caregiver blessed in the light of truth, “For it is in giving that we receive, and it is in dying to self that we are born to eternal life.”
By: Michele Zink Harris
I wish to thank the Coalition of Texans with Disabilities and all the staff involved in the Pen2Paper writing contest for honoring my journey and my attempt to put this sacred walk into words. My God Bless your every effort.