Wasn't that title just so grabbing? No, it was great, I promise! Last summer I learned of a support group they have here once a month for CFS patients. I rolled my eyes. And then I wondered how on Earth they have anyone show up since we're all to damn tired? (answer: people rest up for weeks for this night and they also record it and show it online).
I'm going again, siting in the back, not saying a word and just listening, mouth dropping in awe repeatedly. They get it! They really get it! Down to the tiniest little detail, they get it. I imagine how cathartic it must be for someone dealing with an addiction to be able to go to such a safe place and feel completely unjudged by an audience, what a refreshing place that must be for them. Anyway, some nights they just have forums where the group leader (a psychologist and CFS sufferer for 30 years) leads a discussion and asks questions, other nights they have a panel of people, and sometimes they have the doctor talk. The doctor, Dr. Lucinda Bateman, is one of the most knowledgable CFS specialists in the World. She came into this field after losing her sister to it years ago and now runs a clinic entirely dedicated to treating, and often just listening, to CFS patients and conducting research. You may wonder why I haven't been in to see her yet. I've been on her waiting list for years - years people. Bless her heart for trying to help. Is she? Eh, she's trying really hard to help treat symptoms, and she definitely understands and is really good about getting people approved for disability, etc. Could she cure us? no. not at this point in time. Yet it's not for lack of trying.
Anyway, the support group, I always leave feeling completely oh, what's the word, justified? maybe. validated? that's better. understood. yep. And grateful. I do not have this illness nearly as bad as others and I thank my God for it. Many come in wheelchairs, many spouses or family members come representing their loved ones that haven't been out of bed for years.
Last month's was a doozy - they called it 'CFS Miracles.' Lots of people showed up, far more than many, thinking a miracle cure would be announced. Instead it featured a panel of 8 very sick CFS sufferers and a huge accomplishment they had achieved despite being sick. One talked about having a child, how she had struggled with the decision for years, how everyone had told her how selfish she was to bring a child that she wouldn't be able to take care of well enough into this World, yet how she did it, and does it, anyway. Is she a normal mom? no. Her husband takes her son to a full-time babysitter every morning on his way to work and sometimes, maybe a day or two a week, she is well enough to pick up in the afternoon and spend time with him before dinner. To afford this, they have moved into her parent's basement. Is it ideal? no. But she's a mom, and this little boy adores her and is loved so very much. good for her. that's bravery.
One wheelchair bound young woman had recently published a book, another had finished her degree. Yes, all miracles. I think the one that has stuck with me the most was of this older woman, very quiet and not too sure as to why she had been asked to speak, and her story. She had come down with CFS 30 + years earlier, a busy mom to 4 young and rowdy boys. She couldn't get out of bed, she couldn't move, some days. Doctors back then definitely had no idea and offered no help. After a while, her husband simply gave up on her and 'depression' and left her and the boys behind, with nothing. I tried to imagine what that was like for her and couldn't stop the tears. She talked about trying to raise these children, trying to put food on the table when she didn't have a car to drive or the strength to walk to the market, and especially not the funds. Somehow, someway, she did it. She raised these boys into smart, hardworking men that look back at their mom with nothing but love and great respect. She was not a failure, she did not fail them, she got through it, under and over it. She kept saying that she did nothing special and definitely wasn't any miracle worker but I care to wholeheartedly disagree. To me, doing what she did, feeling how she did, is nothing less than miraculous.
It was hard to hear these stories, especially the 'before I was sick I was a lawyer' stories. or a triathlete, or a med student, or a park ranger or whatever. you could hear the hurt in their voices. almost shame. but there they sat, offering up their accomplishments. to the world, these may not have seemed so amazing, yet to us, they were amazing.
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