Feature Issue on Loneliness and People with Intellectual, Developmental, and Other Disabilities

I know people everywhere and was always really social. I connect with people because I love to talk. I’m a chatty Patty, and I have friends all over the place. I just find like souls. When I was young, I was the social butterfly. I knew everybody in the neighborhood and fluttered around.

When we lived in an apartment complex when we were newly married, my husband, Rick, used to call me the unofficial mayor of the apartment complex, because everybody came to me when they had problems.

Since Rick died nine years ago, though, everybody’s been pressuring me to get back out there and date. I don’t want to. I really got rooted in the relationship with my husband. I guess we’ll call it the ballast, that balancing factor, because I can be a flake, and I can dream pie to the sky. And he would keep things, you know, level. He was my ballast.

The author and her furry companion.

I also have another kind of loneliness that a lot of people don’t understand. My mother, who is now deceased, had me at the at the age of 17, and I don’t know my biological father. I don’t know any of that. I had a stepfather who passed away and I have half siblings who want nothing to do with me. Now I’m 61, and the only real family I have is my husband’s family. So, people are like, well, “Who do you have in your circle of support?” It’s not really much of anybody. A lot of friends have moved away. I miss having that close, tight-knit circle of people who are regularly in my life and who are more than just friends. Those relationships have roots.

Now when I wake up in the middle of the night, it’s just my two dogs there, and we have lots of conversations. It’s not like I can say anymore, “Oh, honey, I have a great idea. Can I bounce this off you? Can you help me?” There’s nobody to have those super significant conversations with, the ones that come from the pit of your stomach and that boost your self-esteem and remind you of who you are. And I do miss hugs, a lot.

Sometimes doing something that we enjoyed together helps. I’ll watch an old movie that we used to watch, like Brian’s Song. Rick used to laugh because no matter how many times we watched it, I always cried, and he would tease me about that. I was never much of a Mountain Dew drinker, but he was, and I find myself drinking a lot of it these days. If I connect to the things that were important to him, I feel like I’ve reconnected to him.

My very best friend, who I’ve known since we were 17, lost her daughter six months after Rick died, so sometimes I’ll just call her in Colorado and say, ‘I can’t take it anymore,’ and we’ll have a blubber contest.

During the COVID-19 pandemic, an aide who was staying with me had twins and she would bring them over and I’d hold them and feed them. They’re 6 now, and they’re not afraid of wheelchairs or kids with disabilities. They are well-rounded, great kids. They saved me during the pandemic.

Today I work as a trainer in workshops on dating and relationships for people with disabilities, among other roles. Many of the people in the sessions are men who are lonely and think the only way not to be lonely is to have a sexual partner. We share ideas about boundaries and how to start as friends and get to know people before asking them out. I often share my story of how Rick and I became friends before we started dating. I encourage them to slowly build those deeper connections.

Sometimes I can be in a crowd of people and be like, wow, I wish Rick was here. And that’s loneliness. I think it happens to a lot of people with disabilities because nobody expects us to have those kinds of relationships.