THE DAY I BECAME INVISIBLE
The Day I Became Visible and Invisible, at the Same Time
By Diane Hamele-Bena, MD
I’ve been visiting my parents in the same large nursing home for nine years. I visit so often that most of the staff know me; many greet me by name. I’m easy to spot--I’m known for wearing brightly colored clothing and eyeglasses. Two weeks ago, I had foot surgery and, as a result, I must not bear weight on that foot for at least six weeks.
Sadly, my mother passed away two years ago. My siblings and I visit our father often. Last week, when I finally was able to visit him following my foot surgery, I ambulated using a knee scooter, a 3-wheeled device upon which I am able to stand up while resting my bent knee on the device, keeping my foot elevated.
The nursing home staff greeted me in their usual manner, many inquiring about my foot condition. Most of the staff is friendly and kind-hearted; however, I know, from experience, that others are not. I often have opined to my family that I wish I could visit the nursing home in disguise, to be able to witness activities without staff knowing my identity. However, this seemed impossible.
Yesterday, I decided to use a wheelchair instead of my scooter when visiting my father. There had been too much pressure on my knee using the scooter through the long hallways, and we still had an extra wheelchair from my mother.
I first realized that I had become invisible when I was sitting at the front doors of the nursing home. My husband had dropped me off there and left to park the car. However, I was unable to propel myself over the saddle of the entryway door, despite multiple attempts. While sitting there waiting for my husband, one of the youngest staff members greeted me. “I almost didn’t see you there!” she said, and then asked about my foot.
However, several staff members whom I have known for years subsequently and separately walked by me, and none of them even looked at me, despite the fact that I was almost blocking the entryway and was wearing a neon pink sweatshirt. One staff member had been my mother’s social worker for her entire seven year stay in this nursing home, and I have known her for nine years. As she passed me, her eyes were cast downward.
I was invisible.
After entering the nursing home with my husband’s assistance, I figured out how to propel myself, and, in the process, developed a profound respect for residents who ambulate in wheelchairs daily—it’s hard work! My husband left to participate in his work-related conference calls in an empty conference room in the nursing home.
While sitting with my father, several staff members saw the two of us together and greeted me. My father enjoyed the extra attention we were receiving in our dual wheelchairs. It was twice during this visit that the “magic” happened: I became invisible and visible, at the same time. Both occurrences were while my father was being cared for by staff and I was alone in my wheelchair, waiting for him.
As I propelled myself around to say hello to some of the nearby residents whom I know, not a single staff member greeted me or even looked at me. I was invisible, again! These were staff members whom I know well, all of whom typically address me by name and some of whom often greet me with a hug. There I was, in my bright pink sweatshirt, INVISIBLE.
My wish had come true. But, as the saying goes, “Be careful what you wish for.” An older gentleman who is relatively new to the nursing home and whom I had not formally met, yet, rolled up next to me. “Where is anybody who works here?” he asked, looking around. “There’s nobody here.” I tried to reassure him. “Someone will probably be here, soon,” I said.
We were sitting in front of the nurses’ station, not another soul in sight. “At least there should be someone at the desk. There’s never anyone around to help me,” he replied. After several minutes, two CNAs walked by us. He called out to them, “I need some help, here!” Neither responded. They didn’t even look at us. “See what I mean?” he asked as he rolled away towards his room.
This time, both of us were invisible. “I was just trying to get help for both of us,” I heard him say from far away. I was visible, to him.
I propelled myself to visit another resident, Marcella, who eats meals in her room. We chatted and I asked her if she enjoyed her lunch. She mentioned that she had not received any sugar for her coffee, “again.” I pushed my wheelchair (with difficulty!) to the dining room and approached a CNA whom I know, and said, “Marcella is asking for sugar for her coffee in her room.” She handed me two packets of sugar as she briskly walked by me in the direction of Marcella’s room, evidently not thinking of delivering the sugar herself.
Back down the long hallway I rolled.
Some time later, I was sitting near the nurses’ station, again, waiting for a nurse to take care of my father in his room. I placed myself adjacent to a female resident whom I have seen many times before but with whom I had not interacted beyond a quick greeting. “Excuse me,” she said, audibly and clearly, to a CNA walking by. “I have to go to the bathroom.” The CNA passed without reacting. The woman gazed downward, and waited. Another CNA appeared. “Excuse me! I have to go to the bathroom,” she politely repeated. “You’ll have to wait,” was the response.
The woman’s eyes met mine, both of us imprisoned in chairs with wheels, yet going nowhere.
“I am Ellen,” she said to me. “They can be so sharp,” she said, motioning with her head towards the CNA. What followed was a conversation in which she articulately described her frustrations regarding her life in this nursing home. She didn’t seem visibly upset. I listened intently and offered a few feeble words of empathy, aware that I had no true sense of the depth of the feelings she was describing.
I have spoken to many, many residents, but this felt very different. I wasn’t standing, looking down at her. I wasn’t briefly smiling and saying hello to her while walking past to check on my father. I had seen this woman so many times, yet didn’t even know she could speak. Previously, I was invisible to her, but now, sitting beside her, our eyes at the same level, wheels abutting each other, I became visible to her, and she, to me.
My father reappeared on the scene, pushed in his wheelchair by a nurse. “It was very nice meeting you,” Ellen said. I glanced at the clock. Twenty-eight minutes had gone by. “Excuse me, please,” she said to the nurse. “I have to go to the bathroom.”
My father and I relocated ourselves to another area, where we came upon my mother’s former roommate, Rebecca, who immediately recognized me and reached out her hand to me. I explained my reason for being in a wheelchair and how much I admired her ability to propel herself in one. She laughed her unique, beautiful laugh and held my hand. Two other wheelchair-bound residents rolled over to join our conversation, both introducing themselves to me and offering advice and pointers about chairs with wheels.
I’m visible, again, I thought.
At the end of my visit, my father and I rolled down the hallway together toward the front doors of the nursing home, my dad’s private companion (who is like a brother to us, now) pushing my dad. The former longtime director of nursing, who retired, but has returned to work part time, appeared on the scene. Reminiscent of the White Rabbit in Alice in Wonderland, she was in a flustered rush to leave for the day. She looked at us and smiled, but didn’t recognize me until I waved and greeted her by name. “I didn’t even know it was you!” she exclaimed, twice. “You’re getting a feel for what it’s like to use a wheelchair,” she remarked.
I told her I realized she was pressed for time, but wanted to quickly mention to her a book I had just read, written by a nursing home administrator about a program she had created (ironically, called “Through the Looking Glass”) in which her staff members live as residents in her nursing home, 24 hours a day, for a period of time, to get an idea what it is like to actually live in a nursing home. “What a good idea…” she said as she waved her hand in the air and scurried through the front doors, adding “…As they say, ‘you don’t know until you walk in someone’s shoes.’”
And the doors closed behind her.