"Some women are lost in the fire. Some women are built from it."
—Michelle K.
The Fire Within Blog
Losing One Is Losing Many

I recently lost one of my all-time best girlfriends, and for this woman in pain it was more like losing a family. No, more like a whole community.

Joan was born with spina bifida, and was a tough, no non-sense woman with a heart of pure gold. She was the first person who introduced herself to me at my YMCA a decade ago, immediately making me feel a part of things. Most every morning Joanie doggedly swam for one to two hours, and you’d only catch her significant disability when she’d labor out of the pool helped by a lifeguard. Joan would then scoot into the dressing room aided by crutches and her bigger than life positive attitude.

All those years back, I had to decline, due to travel, Joan’s insistent invitation to her annual New Year’s Eve party, a bash complete with her husband Harry’s blues band. Upon my return, I invited her and Harry to my condo for dinner – and something highly unusual happened. Joan said yes. In this day and age, dinner parties have pretty much gone out of fashion, especially for those of us with profound disabilities.

That dinner led to countless more and a gorgeous friendship. Indeed, Joan’s home became the only abode I felt comfortable dropping by unannounced. Joan provided strong and steady grounding for me as she understood what few can, having had to use a wheelchair her entire life for any distance. Besides gal pal conversations about anything and everything, we’d discuss getting older with our disabilities, often sharing new technologies and services for easier access. I sensed Joan was worried about me because I’m just one person away from being truly alone. Joan was more fortunate as she had a son and family that stuck by her. Also, her illness was never doubted and her life hadn’t been upended by pain.

Being a native Angeleno, Joan lived her whole life in her golden-age-of-Hollywood home. She drove with no problem, thus avoiding being housebound. Due to all of this, Joan had a big social circle, many who were folks without supportive families in the area. I suspect that being sent to, in her words, “handicapped” school gave her a big heart for misfits and the disconnected. Joan believed that every holiday should be a big one, and that no one should spend them alone. With time, my partner, John, and I grew to adore the holidays again in her generous home with wonderful people making merry.

You see, not long after getting ill with CRPS and other auto-immune conditions 37 years ago, the holidays had become a black hole of loneliness for John and me, something to dread like Marley’s ghost. Since the reality of Joan’s passing has settled in, I’ve thought about the reasons for our, and most everyone with high-impact pain’s, isolation.

To start, I recently read a report stating that 49% of people in the U.S. don’t think they have anything in common with a disabled person and that, more distressingly, 29% purposely avoid conversations with us. Additionally, many of our friends and family members leave post-illness. Also, if we with chronic pain can work at all it’s usually not in our chosen field (outcasting us further), and we’re often left working home alone. The rotten cherry on top is that many of us can’t have our own families, all a recipe for profound social isolation.

Other wild cards that separate me personally from others is my inability to drive, nearly from the get-go of illness. Also, I’m dependent on an elevator and caregiver to escape my condominium, leaving me vulnerable. In fact, our elevator is currently down for three months and John and I are dealing with new ailments due to him having to carry me up and down our flights of stairs.

My aging, memory-impaired mother has been dealing with health challenges for a few years, introducing her to the world of isolation. Ironically, Mom’s been reminding me to enjoy my younger years while I’m surrounded by people because “it won’t be that way once you’re infirmed.” I don’t have the heart to remind her that I’ve lived an “elderly-like” life for decades.

For we women in pain lucky enough to have a Joan in our lives, their passing is gut-wrenching enough because we lose a gem of a friend. Harder still, we lose a person who accepted and loved the real us along with their social circle that connected us to joyful things. We lose that once-in-a-blue-moon friend and community, so the loss is compounded many fold.

Besides sadness, I feel deep gratitude for every moment I had with my beautiful friend. If you have a Joan, please tell her or him how much they are loved and how lucky you feel to have them if your life.

You will live on in my heart forever, dear friend. I love you so very, very much…