For as long as I can remember, we’ve been hand-holders, her skin always so soft and her touch seldom anything but gentle. Driving in the car together, we often clasped hands while I sang silly songs and she laughed. And we always held hands while walking, guiding her as I walked slightly ahead to avoid potential hazards and obstacles she might not otherwise see. Yes, it’s always been an important aspect of our relationship, and the stroke wasn’t going to deter our long-established habit.
Throughout the day and night during her hospitalization, I pulled up the reclining chair as close as possible to the left side of her bed. Placing it in just the right position, I was able to carefully wind my hand between the rails of the hospital bed. At night we clutched each other’s hands in the darkness, the sound of her IV rhythmically whirring at the head of her bed. She softly repeated “home, home” as she drifted in and out of sleep. I lay awake as I worried, scared whether we would make it home together, or whether home would ever be the same for either of us.
Finally discharged from the hospital, we were in inpatient rehab where we were given a room that accommodated two hospital beds. Every night I released the brake of my bed to move it closer to hers. It would sing a high-pitched tone as Ashley giggled, amused by the idea that I had somehow broken my bed. I looked forward to the nightly ritual as I was comforted to hear her laugh, once again affirming that her humor had not been lost by her devastating circumstance.
I aligned our beds before setting the brake, adjusting my bed’s height to match hers, and then inclining her head to 30 degrees to address her feeding tube. It was the same for twenty-four nights: the brake, the noise, her soft giggle. And one night after another, I wound my right hand through the rails of the bed as we held hands throughout the night. Ashley no longer said “home.” She must have recognized that our room in rehab was home for now, and that she was not yet prepared to tackle the demands of her previous life.
Upon discharge and finally home, I slept with her in the same bed. Transfers to and from her wheelchair, and in and out of a four-poster bed, were now all but impossible. Her queen-sized bed was broken down, mattress and box springs placed directly on the floor. Each night, after placing her in bed and stretching ligaments and tendons, I carefully propped her right arm on a pillow to reduce the swelling in her hand and fingers. And each night, as her right arm lay limp, her left hand was in my right as our fingers intertwined.
But something has happened since her stroke, and since returning home. The gentleness she once had in her touch has become demanding and agitated. She searches for my hand in the darkness and holds on with a firm grip. And when our hands happen to unclasp in the night, she frantically searches until she can again tightly hold my right hand within her left.
Her skin is still as soft as ever, but her touch not so much. I recognize it as a byproduct of the stroke, as are the bruises and cuts up and down my arms.
I willingly care for her, transferring her to and from the toilet, the shower chair, the bed, her wheelchair. But I am left to protect myself from her grip: grabbing a fist full of hair, pinching the fleshy part of my arm, or digging her nails into the back of my hand until she finally lets go and the skin is pierced with crescent moon-shaped cuts.
She is now dependent upon me for everything. And she’s angry. It’s apparent in her touch, but I can also see it in her eyes. The stroke has robbed her of far too much. What was once a simple task must feel overwhelming. Just a swallow, a simple swallow, now takes careful planning from a body she can no longer count on.
She’s also got to be scared. I know I am. There is still so much hard work ahead. We are only three months into this journey. The cuts and bruises can serve as a reminder that she is thankfully still with us, and her soft skin a reminder of how things were and where we hope to return.
But, in the meantime, I’m not letting go of that hand. It’s not time. Not yet anyway. In fact, it may never be. No matter how much anger she exhibits, no matter how hard she pinches, no matter, I am not letting go.