By Cynthia Toussaint.
Lately I’ve been reading reports about how loneliness fits hand-in-glove with high-impact chronic illness and pain. In fact, I’ve learned that the social isolation we suffer is more dangerous to our health than obesity and smoking. Disturbing stuff.
I’ve been living with CRPS, chronic fatigue syndrome and a host of other auto-immune issues for 35 plus years. For the first two, I was able to continue my career as a performer which kept me – though frightened and in severe pain – surrounded by a circus of stimulating, talented and caring people. I was living my passion with my tribe and, despite undiagnosed CRPS, I was happy and hopeful.
By year three, my mysterious pain had spread and worsened to the point I couldn’t walk, let alone dance and perform on stage. I quickly found myself trapped in my mother’s suburban home. I was mostly unable to get out of bed, and when I did, crawling to her backyard was about as far as I got.
My life partner, John, soon quit his job performing around the world to move in and be my full-time caregiver during my futile attempts to beat this mysterious pain. As the months ticked off, people stopped dropping by and the phone rarely rang. While our lives were on hold, others moved on. My mom, siblings and many friends had left the area to pursue college and passions. What was once a bustling, epicenter-of-the-neighborhood now felt more like a morgue.
John experienced the isolation first as I was in too much pain to be lonely. I was aware, however, that support was becoming increasingly sparse. Mostly, I suspect this was due to my doctors explaining away my pain problems as “all in my head.” Soon, remaining friends were fearful and confused. Even neighbors stopped knocking at the door, something that was a constant while growing up, something I loved.
In a “Hail Mary” attempt to re-spark my showbiz career, John and I moved to Los Angeles, but those hopes quickly fizzled. That’s when the isolation and chronic loneliness became worse than my pain and fatigue. I felt warehoused in our condo unit, unable to leave without being assisted by John and my wheelchair. When I did get all the way to the car, there was nowhere to go and no one to see.
Like many women in pain and our partners, John and I were cut out of most social norms. We weren’t able to have children and John couldn’t hold down a fulfilling, acquaintance-generating job. He worked a nightshift doing mundane tasks to be available for my every need through our spirit-breaking, lonely days – which turned to months, then years.
Today, 33 years after being forced to quit my dream career, the loneliness hasn’t improved much. Yes, I run For Grace to help women in pain and my job keeps me busy. It also provides much meaning and travel, which is great. But mostly I work from home at a computer or on the phone. Despite having colleagues around the country, and even the world, no one knocks at the door after a long workday – which is what I yearn for most.
Some would advise John and me to throw in the social towel and accept what is. Chronically ill people are doomed to be lonely. I hear you, but I’m convinced that to maintain a decent level of wellness, we need human contact. Our species is a social one.
So recently John and I stepped up our community outreach. We joined our local YMCA which by their own mission “builds healthy communities.” I swim, do ballet-pilates and fundraise while gabbing with gal pals, a few who have become close. We’ve joined our local church of choice, where we attend service, sing in the choir, volunteer at events and meet-up with members outside of Sunday. We enjoy eating and buying fresh produce at our Farmer’s Market down the street. Next on the list is attending our council meetings to get to know more of our neighbors and look out for one another. While it’s difficult to do many of these activities in my wheelchair, community is just that important.
It can be a daunting task to make close connections in a big city like Los Angeles even for the healthiest among us. But, like every city, LA’s really a collection of small villages. Friends can be found if we want them badly enough, make every effort and never give up.
People-to-peopleness, I believe, is a must for wellness and self-care. Not internet, not social media, not virtual reality where “friends” and “connections”, while a nice complement, are a poor replacement for the real thing.
I’m known for my smile when I greet someone. I hug, I touch. I’m warm and open to closeness… still I yearn and hope for that knock at my front door.
Cynthia Toussaint lives in Los Angeles and runs For Grace—a non-profit that focuses on providing education and awareness for women in pain.