A Minister for Loneliness

"Researchers have found that loneliness takes a physical toll, and is as closely linked to early mortality as smoking up to 15 cigarettes a day or consuming more than six alcoholic drinks a day. Loneliness is even worse for longevity than being obese or physically inactive."

This can be found in a recent Wall Street Journal article about the health effects of loneliness. The U.K. has addressed this issue by appointing its first "Minister for Loneliness."

Behind the stage of our community gatherings is the quiet and unseen work of our advocates. Among those are the relationships formed with people living in long-term care facilities. Our friend Kayli Capshaw, spent some time with several advocates and shares the story of Ralph and Luis:

Luis is a native New Yorker living in Queens; he works at an airport handling cargo shipments and covers the overnight shift. Luis and Ralph shared a 3 year friendship before Ralph’s death. The love Luis had for Ralph was clear in his candor describing their initial encounter: “I went in thinking I was going to save the world…but when we first met, I felt like they gave me the hardest case!”

Ralph, formerly living on the streets was placed in a rehab facility in his early 40s. Like Ralph, those facing poverty, lack of family, and significant mental or physical impairment can lead to institutionalization, even at surprisingly young ages; in fact, some have spent their whole life in institutions. At this point in Ralph’s life, he was regularly and heavily sedated with psych meds. He would spend the remainder of his life living in a hospital bed.

Much to Luis’s initial consternation, Ralph was NOT emotive and often didn’t have much to say when Luis came to visit,  “Honestly, he wouldn’t even talk to me at first.”  Heeding sage guidance from his father, Luis continued to visit regularly, despite the less-than-warm welcome.  The lack of communication left Luis with a host of insecurities, including whether the friendship would work out. There was a period of time when Ralph refused to come out of his room and other bumps, but Luis stayed the course.

Imagine this is your life. From your bed to a dayroom, then back to your bed again. Your dayroom time, in the stead of vocation, education, recreation, consists of television playing in the background, eating hospital-like food, and perhaps once in awhile a volunteer group will serenade you with Christmas carols. This is when you’d realize the holidays have approached once again. Day after day it’s the same story. When you have no family, and nothing to break up the monotony, life can be a blur.  Luis came with positive intentions, but they seemed fruitless; what was going to turn Luis and Ralph’s relationship around?

Persistence and a small stroke of genius proved to be a game changer: Dominos. Luis brought along a game of dominoes for something to do and discuss—which alleviated the pressure of finding things to talk about. Luis joked, “We were both mellow—and NOT conversationalists!”  Not all partners necessarily express their sentiments and emotions in ways we may expect.  Luis was willing to sit with the discomfort of the unknown and through his consistency and humility, found unexpected common ground with Ralph.

 
Ralph and Luis playing Dominos in community room.

Ralph and Luis playing Dominos in community room.

 

Over time, Ralph not only agreed to play (he, in true Ralph fashion, initially refused), but became great at dominos. They would play together regularly and eventually with others, as well.

Accepting the fits and starts inherent to getting to building new relationships, persistence can bring reward; even the smallest things can be a game changer.  And although there is a connection of joy and appreciation shared, the reality, is that the closer you get, the more you know about a person’s situation, the harder it becomes to feel like you’re making a difference.

His goal was to get out of this facility.  He’d say he wanted to leave, and though I wanted to tell him, ‘Go be a free bird!’  the reality was that he would be on the streets.  I wanted to get him out of there, but I couldn’t do anything.”  Though we want to swoop in with a cape, the greatest thing we can offer our friends is consistent, reliable relationship; many people with disabilities have few meaningful connections to draw from and spend much of their time isolated and lonely.  

Maintaining hope and enthusiasm can be difficult when there is seemingly little to no change in a person’s life, especially when you begin to deeply care, and identify with the person. Like a well-tended garden, the fruit of your labor doesn’t come overnight, but the work is not in vain. The process is just as important as the end result.

When it comes to relationships, the story never really ends, it simply shifts and moves in stages. For Ralph and Luis, there is an ending in Ralph’s death, and the life that comes from the memory and book-end reflections continue to inspire, Luis reflects:

“There was a gaining of trust; he socialized more--more conversation, respect--appreciation between the both of us and being together.  I felt like it brought me back to the reality of what life is really all about.  I consider myself a no nonsense kind of guy and I feel like he was the same way; you really don’t see that kind of relationship in this type of society. It made me feel comfortable. With him, people, with myself.  Learning what it truly means to serve someone--it doesn’t have to be that you have to raise them up--you can always go back to the smallest thing. It was a simple relationship, and even out of that simplicity a lot was being transmitted. The trust, it took time to build and initially was hard to build. To describe him--mellow, hard headed, genuine--that’s what I appreciated the most, the genuineness of the relationship. My expectations fell; I thought I was gonna change the world, but just me showing up was what was needed. It showed me the importance of relationship and fellowship and humans...we all just want to be loved.” - Luis

Similar to other Advocates, Luis wished he could change Frank’s circumstances or make a larger impact, but when he would ask Ralph if he needed anything, Ralph would simply shake his head and say, “I just need visits.”