This holiday season Jody Smith turns her eyes to the people of Phoenix Rising and gives thanks for you all …
Phoenix Rising is a community that I will always love. Seven years ago I stumbled upon this place in its early days. I had been isolated and lonely for a number of years because I have ME/CFS, and finding this place and these comrades in disease was life-changing for me.
As is the common story with ME/CFS, I had gone through the personal culture shock of having had a perfectly fine social life, personal life, family life, and the ability to do most normal things with only the normal amount of struggle — and then had it all ripped away from me.
I wasn’t prepared for the isolation chamber that is ME/CFS. The people I knew all disappeared, my routines at the grocery store, saying hello to the shop people in town … all gone. The impact of some of this surprised me –much of it was the trivia of life, the peripherals. Yet the absence of peripherals can make for a stark existence indeed.
And then, I got my peripherals back. Well, some of them anyway. This was one of the most important things I regained when I came to Phoenix Rising.
The information I found here was important, of course. The articles, the threads that helped me to understand research that was way over my head, the new understanding of how this illness affected other people, all were highly beneficial to me.
But what warmed my heart the most was the fact that someone cared that I’d used up all my energy that day and got my hair washed. In fact, a lot of people cared about these bits of a daily life. When I’d had success getting into and out of the library — with books! — I came home and told my friends in the Community Lounge. They applauded, encouraged, and held me up.
And I cared deeply about them in return. I loved knowing about a friend’s children, or pets, or the running battle with dishes and laundry. How did they pass the time? Did they have tricks to help them rest, or treatments that eased their symptoms? Were they afraid? I wanted to reassure and comfort them. We did these things for each other.
We had birthday parties. We told stupid jokes. We complained about things and commiserated with each other. Just like normal people do who have all their peripherals in tact.
This was my local coffee shop. This was my bumping into a friend on the street. This was my casual phone call or dropping by for a visit.
It all happened on Phoenix Rising. And believe me, it wasn’t happening anywhere else. I was more fortunate than many, in that I had a family who cared for me. But they couldn’t provide the things that are by definition not in the family circle.
When the holiday season loomed, we shared our griefs and angers and fears and guilt in the Lounge. When we were overwhelmed by a nostalgic commercial, or the realization that other people were gathering with their friends, families and co-workers and we could not, we turned toward our computer screens.
We warmed ourselves by the fire created by the virtual presence of other ill people who were also alone. We were alone together, and that togetherness helped to ease the pain, cut the boredom, and make us laugh. It helped us to face yet another day in limbo with a sense of belonging.
This is a hard time of year for people who are ill and isolated. If you are bedridden, if you live alone, if you don’t have friends or family, this season really piles on the coals.
If you are on the street, or in a tent in a forest, if you live in the desert away from mold, or you share a place with friends because you’ve lost your home due to illness, this time of year can be a bitter pill that’s hard to swallow.
Your reality may be that there are no people to gather with — and no energy to do it with anyway.
I remember Christmases where I knew there were people who cared about me just down the hall. I’d joined them long enough to eat a dinner that I didn’t help cook, then dragged off to my room, with the door closed because neurologically speaking I couldn’t handle the sensory chaos.
It was great to know they were there — but I couldn’t be with them. There were no Christmas lights, Christmas movies, holiday laughter or games for this girl. And even so I could count on a big ol’ crash that would last throughout January just from the little bit of happy chaos I’d dared to enjoy.
And still I knew I was luckier than so many others.
I’ll be thinking of you all. Thanks to the Internet and Phoenix Rising, and the caring people who inhabit this place, we are connected. You matter. You are known. You are loved.
I hope this season can mark the beginning of new health and increase and well-being for everyone. I hope for all who are ill that there will be better days ahead.
Photo courtesy of PublicDomainPictures/Pixabay