When I retired as a school nurse in March of 2017, I wasn’t ready to stop working completely in my profession. I still wanted to do something to help others– just not in the same way. After six months of considering my options, an opportunity opened up for me at UNC– where I had my first job out of nursing school. It was as a part-time research nurse with a study of clients who’d been denied Social Security Disability after their first application. All of the participants had a mental health disorder.
The purpose of the study was to see if these clients would be able to find and sustain employment with a full compliment of supports: a nurse–to help navigate healthcare and follow through with the recommendations; case manager– to assist with housing, finances, daily living issues; job coach to help them apply, prepare, and trouble shoot with the employer as problems arose.
I’d worked in mental health for fifteen years in both inpatient and outpatient settings. While I’d seen a wide range of diagnoses and severity of illness, most of my interaction with patients had been over a brief period. Working with the study clients for three years, I’d get to know a lot more about their daily lives and how they functioned in the world. I knew the value of work– the self-esteem that’s gained from earning your own money, developing job skills and relationships with coworkers, as well as the structure and focus that a work schedule provides. It would feel good to me if by helping these clients manage their health challenges, I would also be helping them to maintain employment.
Once the clients were enrolled, each professional on our team had to do an in-person assessment; I preferred to go into the homes of our twenty-four clients instead of meeting them in our office. You got a better understanding of them by being in their living space. I understood the value of home visits long before I was a nurse.
When I was a girl during the sixties, I accompanied Mama on her Saturday side-business, selling Rawleigh home products in the Black community. I would sit by her while she showed her wares to the woman of the house. Those items included everything from mop heads, medicated Ointment, Liniment, curling irons, Chenille bedspreads, to vanilla flavoring. While Mama collected the money for the purchased items, I found my fascination with the interior of the home; the colors of the walls, neatness or messiness, number and types of photographs displayed, amount of furniture, light that was allowed in–with some dark with heavy drapes and others open to the sunlight through clean windows. The smell of the home whether it was dirty clothes, Pine-Sol from a recently mopped linoleum floor, or the starch used for ironing– added to the feel of that space. All of those clues told me something about the customers– even from my young vantage point.
As an adult going into homes, I gathered information about my clients from some of those same clues. That home reflected how they were navigating life. Were they living out of unpacked boxes? Maybe they didn’t see that home as permanent. Were there no pictures of family displayed? Maybe it was too painful to see those faces every day. Were the blinds closed, the dark heavy curtains pulled? Maybe they couldn’t tolerate the light or they didn’t want others’ seeing in. These were all guesses on my part until the client revealed the true meaning.
With our study clients, many lived in subsidized housing–some did not. No matter the size of the house, the real story was on the inside. One woman who was married with no children and in her early forties, lived in a messy apartment. She had to clear a space for me. There was a pile of trash in the corner of the living room– papers, emptied boxes, drink containers. I wondered why she hadn’t just walked across the room to her kitchen and put the pile in her trashcan. A week later, when the job coach on our team went to her home, the same pile was in the same spot on the floor.
We had another study client, in her early thirties, who we’d helped get an apartment after she’d been living out of her van. In spite of staff working with her to show how to take care of her home, she wouldn’t follow through and keep her apartment clean. With the continued threat of an insect infestation for the housing units, she eventually lost that apartment.
Like many of our study clients, both of these women had been affected by childhood trauma. It had deeply impacted their ability to adapt in their lives as circumstances changed. Another woman who did well the first two years in the study–going to school and getting jobs, decompensated with the pandemic. When there was a surge in Covid-19 deaths, her paranoia surged and she was hospitalized several times. It was sad to see the change in her.
Over the three years I’ve worked with these clients, I’ve also seen how the smallest improvement could provide a flicker of hope. It might be moving up on a subsidized housing waiting list, hearing our study would pay for an eye exam and glasses, or a bag of groceries dropped off during the lockdown. As the study progressed, some were able to see changes they’d made; the ability to stick with a job, learning to speak up about a medication they thought would be better, setting boundaries with family members.
It leaves me thinking about hope– for my study clients and everyone else. Where do people find their hope? How do current circumstances impact our ability to be hopeful, to feel that things are going to be okay, that we have a future with possibilities?
My view of life is based in my Christian faith and the hope that comes from God sending his son as a baby. The Christmas song, “Oh Holy Night” captures the essence of the expectant anticipation in the words, “a Thrill of Hope the Weary World Rejoices.” As Christians, we view the hope of the world in Christ who overtakes any darkness with his light. We still have worries and concerns; we’re still aware of the troubles of the world– including the impact of the pandemic. But ultimately, we do our best and leave the outcome to God.
Others, who aren’t Christians, find their hope in other faiths or philosophies, in spirituality that develops over the years, or perhaps from the optimistic view of their family that has informed them since childhood. There is a source that supports them when life’s challenges become overwhelming.
But when you’re without a source of hope, how do you gather your strength to move forward when there’s so much adversity–whether it’s internal or in the world?
In thinking about my study clients, and others I’ve known who struggled, I believe they needed to borrow from the hope of those around them. There are times we can’t pull ourselves up; we need someone else to lift us out of that deep dark pit. When we’re able, we can be those hands reaching to the one with no hope, who can’t even see a flicker of light.
Our world needs all the light we can get. Wherever our light comes from, may we share it with others so they may feel a wave of that emotion that is the thrill of hope.
Blessings to you all,