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Phoenix Rising: The Gift That Keeps on Giving All Year Long

This holiday season Jody Smith turns her eyes to the people of Phoenix Rising and gives thanks for you all …

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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

Support Phoenix Rising

Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. and we'd love to expand our Board of Directors. So, if you think you can help then please contact Mark through the Forum.

And don't forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising's Donate page by clicking the button below.

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{ 13 comments… add one }

  • Lynne B December 19, 2016, 3:40 pm

    Me too, Jody. I spend time on this site every day. Usually don't have the time or energy to respond, but have the same feelings of support and camaraderie. More to the point, perhaps, I have learnt so much here from more knowledgeable members that isn't available from the usual media sources. I feel so thankful for all of this. Merry Christmas to all here on Phoenix Rising, whatever moments of peace, love and joy we can find, even if our sources are within ourselves or our trusted others.

  • Jody December 19, 2016, 7:57 pm
    Lynne B

    Me too, Jody. I spend time on this site every day. Usually don't have the time or energy to respond, but have the same feelings of support and camaraderie. More to the point, perhaps, I have learnt so much here from more knowledgeable members that isn't available from the usual media sources. I feel so thankful for all of this. Merry Christmas to all here on Phoenix Rising, whatever moments of peace, love and joy we can find, even if our sources are within ourselves or our trusted others.

    Lynne B,

    Merry Christmas and all good things to you.:)

  • drob31 December 19, 2016, 8:02 pm

    PR has the smartest and nicest people in the world.

  • Jody December 19, 2016, 8:03 pm
    drob31

    PR has the smartest and nicest people in the world.

    drob31,

    It really does. Thank goodness:)

  • daisybell December 19, 2016, 10:09 pm

    I'd just like to do a shout-out for those who are not well enough to be on PR. We think of you too…
    Wishing everyone a peaceful and happy holiday season, and improved health in 2017.

  • Jody December 20, 2016, 6:17 am
    daisybell

    I'd just like to do a shout-out for those who are not well enough to be on PR. We think of you too…
    Wishing everyone a peaceful and happy holiday season, and improved health in 2017.

    Daisybell,

    Yes! I can't imagine the level of loneliness for those of us who can't deal with a computer or who don't have access to one.

  • Sidney December 29, 2016, 7:26 pm

    Deep agreement with all of the above, and deep gratitude for those who have created and supported PR, and for all who read, participate, reach out, take the trouble to help (and that effort, we all know, does not come easily) – it would be hard for me to describe the difference that you all make to my life.

  • SuzieSam December 30, 2016, 2:58 am

    I love this forum! The wonderful people here give me the courage and confidence to deal with the world "out there", that doesn't understand how awful it is to lose your life.

    It's hard to endure the horrible disconnect between the seriousness with which our health is taken by our wonderful research community, and the dismissive attitude of regular doctors.
    Here at Rising Phoenix I get a reality check – what I'm feeling is real, it's awful, it's damn difficult, and most importantly – I'm not alone.

    You nailed it, @Jody. Hoping for a very happy new year for us all – good health, happiness and breakthroughs :thumbsup::heart:

  • Jody December 30, 2016, 7:27 am
    SuzieSam

    I love this forum! The wonderful people here give me the courage and confidence to deal with the world "out there", that doesn't understand how awful it is to lose your life.

    It's hard to endure the horrible disconnect between the seriousness with which our health is taken by our wonderful research community, and the dismissive attitude of regular doctors.
    Here at Rising Phoenix I get a reality check – what I'm feeling is real, it's awful, it's damn difficult, and most importantly – I'm not alone.

    You nailed it, @Jody. Hoping for a very happy new year for us all – good health, happiness and breakthroughs :thumbsup::heart:

    Couldn't agree more, SuzieSam.:)

  • edwardssusanb January 1, 2017, 11:39 am

    Thank you Jody! It is somehow reassuring to hear others describe my experience. It allows me to let go a little bit and feel into this larger community I am a part of. May we all feel grounded, safe and supported as we continue our separate but united journeys toward health.

  • Sing January 5, 2017, 4:59 pm

    You write so very well, Jody, about the feelings and experiences you have had and most of us here have shared. Thank you for the gift of understanding which you can convey. It brings us closer together and helps us know ourselves better.

    I have gained valuable support and knowledge from the people here and have also had the chance to share my support and what I have learned with others too–both have meant a lot to me. Thank you!

  • Jody January 6, 2017, 7:26 am
    edwardssusanb

    Thank you Jody! It is somehow reassuring to hear others describe my experience. It allows me to let go a little bit and feel into this larger community I am a part of. May we all feel grounded, safe and supported as we continue our separate but united journeys toward health.

    I know what you mean, edwardssusanb. One of the great things about this place is that reassurance, as we are all dealing with this mysterious disease. Better days ahead for us all!

  • Jody January 6, 2017, 7:28 am
    Sing

    You write so very well, Jody, about the feelings and experiences you have had and most of us here have shared. Thank you for the gift of understanding which you can convey. It brings us closer together and helps us know ourselves better.

    I have gained valuable support and knowledge from the people here and have also had the chance to share my support and what I have learned with others too–both have meant a lot to me. Thank you!

    Well thanks, Sing.:)

    The more understanding we can garner, the better. The more we can talk about what we are going through, the better. And the more we can bring to each other through that sharing … we all benefit.:)