We all have people we love, and when we are sick, we may feel that we are not able to love them as fully as they deserve. But there are ways to express and accept love through the helplessness.
I fell in love with someone incredible a few months back. He came into my life on a gust of wind and changed everything. A life that was quietly content, honest, settled and realistic about enduring chronic conditions as a result of repeat surgeries was suddenly so full of promise of a world unknown.
I told him about my brain tumor the first night. I told him I loved him a week later. I spent days and endless moments reveling in his arms, soaking up his love, feeling the lightness of a true love carry me away.
He knew I had endured hardship in health and in life, but he saw that peace in me that I had been carrying around. Then that peace began to be unsettled by fear. The fear of loss of function, of ability, of life - fears that are all too real when you must stare down craniotomies and cranioplasties on a regular basis.
In the hospital, after surgery, he slept by me in a chair, his snores mixing with those of my mother to create a soft rhythm that would carry me through the sleepless night. As I lay there contemplating my existence, my pain, and what potential my life could carry, I watched the outline of his breath and quietly hoped that this surgery had fixed the cerebral spinal fluid leak that kept me returning to the hospital. The next night, my love lay by my side in the hospital bed, me hoping what little space I could provide would show him that I cared about his aching back. It was a small gesture, meant to whisper, “I see what you do for me, I would do it for you, and I will pay it forward.”
It is the same quiet whisper I attempt to make at all my family and family of choice when they rise to the occasion of loving me through illness. It is the same quiet whisper that only those who truly know my heart can hear. It is the quiet whisper that brings tears to your eyes when a friend writes you a card, or when you hug someone just so. It is so quiet that if you stop being present you may not hear it.
It's been challenging for me to figure out how to let this new love catch up with this suffering that has lasted for years. Most of my friends and family have grown into my state of being and illness, with me. It has been hard for me to cultivate patience at the explanations I must give in order to allow someone to love me and understand the circumstances of my chronic pain. It has been a challenge for me not to see myself as a burden and a blemish on his own young, beautiful and promising life. It has been a challenge yet it has been a worthy challenge, one I am grateful to have.
It is not uncommon in illness to see ourselves as holding back the ones who support us. I worry I put strain on my parents and friends, and now my new love. I worry that life will break and shatter as it did in the past, that my health will be too much to carry. But then I hear it, the quiet whisper from the ones who always rise to carry me:
“We see what you do, we see who you are, let us carry each other.”
Whether you are sick or well, family or friends, caregivers or just empathetic witnesses, when you've found yourselves in the position of caring for and supporting each other beyond what you expected, look for the little things. Find the small gestures and listen for the whispers. In the quiet moments you will find a way to love one another, even in Illness.