Toward the end of this winter, I sat in a bathtub, tears coming down my face, and prayed for change. Things had been stationary and repetitive for too long. All my parts, body and mind, were beginning to go stir-crazy, and I’d given it a solid go. I think in modern times, being confined to the same two rooms for long periods of time without real socialization and not going totally insane is a kind of victory on its own. Things went from stationary to stagnant, and I’m pretty diligent about avoiding that disposition. Undoubtedly, it started to wear on me. I closed my eyes and envisioned the “path” of my life like a black dotted line on a treasure map–obviously th line had been very straight for a while. But I visualized that in the spring the dotted line would take a sharp turn, still progressing, still moving in the right direction or whatever, but that there would be a marked change. It would stir things up, it would springboard the stagnancy of sickness and the same two rooms and same faces at the pharmacy and pop them into the air like popcorn. I wanted an interruption I guess. And I felt tired waiting for one.
The thing about change, I was beginning to realize, is that it has a lot to do with you (me) and less to do with crossing your fingers and waiting around for it. I admit, for a long time in terms of the illness, I did that in a certain capacity. I’ve hoped and prayed for a cure ever since I became sick, but I was never involved or deeply curious in the process of how that could happen. I wasn’t a part of online support groups for ME/CFS. I was never really involved with advocacy, and I didn’t follow the latest research or science. Sometimes people would send me articles from The New York Times or some Magazine that would tell the story of someone sick, usually summarize the history of CFS mostly on the surface, and then reveal the prognosis, which was that there was still no cure and no approved treatments. Once, I was sent a New York Times article called “Chronic Fatigue Syndrome No Longer Seen As ‘Yuppie Flu’” You’d think in some way, a major and respected newspaper validating your disease would be a comfort, but to someone who’s been suffering for years from it, it was more like Yeah, no shit. It’d be like seeing an article titled “Water Found to be Necessary for Survival.” My mom, who follows every study, reads up on trials and new findings, would update me often in an optimistic tone. But I can remember, in the first year after the crash that I’d stopped working and was living in their house, I felt angry and remember telling her I didn’t want to know about any more studies until there was one that found the cure. I was clearly still in the “acceptance” phase of this whole thing, and that was a prissy reaction to say the least, but I just never wanted to get pulled too far into the “community” of the illness. I felt if I entered in too far, which would be easy to do, it’d take me over, consume my identity. And I battle myself a lot in avoiding that transition–I don’t want to turn into the ‘sick girl.’ There are just so many other things I want to do and express, and sometimes the illness feels like it controls too much of my outer life, after already having control of my insides. It’s a strange, duplicitous struggle to face. And some days I feel like the illness wins–not in terms of my body, but my mind. That’s what I try to avoid.
Last week, a news crew was at my house. I say crew, but it was really just two people. An interviewer and a cameraman from Fox8 News New Orleans. It’s funny how it all came to happen, but stars aligned in certain ways, and now news-anchor Rob Masson was interviewing me in our living room. We talked about the petition, about getting sick with this weird, elusive, invisible, strange disease. He was a great interviewer and he understood the illness well. You can tell when someone gets it by the questions they ask. For instance, a person who doesn’t get it asks questions like “Do you think if you did more during the day, you might sleep better at night?” And a more intuitive person might ask “So how do you prepare for an event you know is coming up? And how long do you pay for it physically?” Rob and I had talked already on the phone about the disease, the NIH, the history and the campaign for nearly an hour a week before. Then the day of the interview they ended up staying two and a half hours at our house. (It will probably be a two minute spot) They spoke with me, my mom, and shot footage of Monty, of course. . Normally, the idea of “being on the news” even local news, would stress me out. Mainly because internally I’d think “Why do I have any business being on the news? I’m just a sick person living with my parents?!” But the reassuring and truthful answer was that this really wasn’t about me. I’m an example of one among millions of people living with the disease, and I felt I could speak up for it in that way, provide an example of what it “looks like”–which is nothing. You couldn’t pick a person with ME out of a crowd, but it’d probably be the one lying down using some odd piece of furniture as as a bed. I was/am exceedingly grateful this petition made the news, mostly because I think any press that shows what this disease looks like and is told from the angle of someone who is actually sick, not a psychiatrist speculating about it, is always a good thing.
But the real angle was the campaign, which is also not about me, but about the NIH, and how their lack of funding and research has left millions of sick people without a place to go. You can count the number of CFS specialists with one and a half hands. The reason I felt optimistic writing this petition is that this is a problem with a very clear solution. It has always had a solution, and in every article, blog, comment debate, news story, I see the same desperately needed solution being pointed out, which is funding. The disease is complex, the research and studies and science is complex, but some of the top virologists and infectious disease specialists in the world are signed on to study this, say they can solve it, they are simply lacking the funds. It just seems so simple in that regard. It’s obvious this can’t be ignored anymore. This is an epidemic, and I know that word is overused a lot, but when millions of people are out of commission, and the country is paying billions a year in lost productivity and medical expenses, I would call that somewhat of a health crisis. So, it’s time. And Mr. Collins and Secretary Burwell can make it happen. I know they can.
I’m still learning how to be an advocate. I don’t know if it’s really my calling. My sister on the other hand should consider this as a career option, she’s really good. :) I’m still trying hard to attain more signatures because I’d like to get as many as possible for the protest on May 25th in DC. The power in this method of “protest” is in numbers, so I’m still thinking “Hey, we can make it to 35. And if we can make it to 35 we can make it to 40!” 40,000 has a nice ring to it, a more sturdy number. Anyway, I trust we’ll get the number we need. And I still have the hesitancy of not letting this fight, win or lose, enter too deep into my identity. In my attempt to share the campaign with every CFS organization, I’ve sort of leaped into the Chronic Illness Community…and everything there makes sense. I see myself in all the stories. I recognize the descriptions. I understand completely what people mean in their emotions and discouragements. But sometimes I have to just dip a toe in..share the petition and then get out. If I spend too much time there, I don’t know, I feel too consumed by it. And those are my brothers and sisters! It’s not that I’m turning my back on them, I just live it and write it enough as it is. I guess I don’t need reminders right now. I’m more hungry for change.
This petition I hope can speak for us all. Maybe I will just always be fighting to remember who I am, to hold on to some remnant of myself that was there before I ever became ill or ever started “fighting for a cure.” In one part of me, a flame has been lit and I feel ready to take on the world and achieve this change. Halfway because I’m bored of it. It’s so obvious what we need to do, and I know it will happen eventually, I’d just like it to happen sooner so we can all get on with other things. The other part of me thinks I can write through the filter of being sick till the cows come home, but there’s so much other subject matter out there. There’s so much else to do. And I want to explore it all. There are so many other stories I want to tell. And I think I will. I’m just a little in between worlds for now. Fighting for this cause and also trying to stay conscious of who I am without all of this. Dive too deep into anything and you can get stuck there. Maybe dive is the wrong word. Attach. I don’t want to become attached to this. I want things to change. And then I want to travel to Japan.
So, that’s what’s happening in my neck of the woods. Physically I feel like absolute crap, which is the most efficient and motivating reminder to keep fighting for this change :) I don’t know when the news segment will come out, though I can already anticipate my self-consciousness about it. I don’t like seeing myself on camera or hearing my own voice. I am fat from the steroids and hardly even feel like I’m in my own body anymore. And it’s a vulnerable thing–I never imagined I’d be interviewed by someone and talk about being sick, 31 and living with my parents on TV. I mean, this could really ruin things for me on Tinder. But the TRUTH is, none of that matters. It’s not about me or my story or whatever I’ve lost along the way. This is about the campaign and what’s next. It’s about what we’re asking for, which is a very specific thing: $100 million bucks. It’s not that much money, come on! But, if the segment goes online I will try to post it here. So, once again, I will shamelessly post the petition, and if you feel like signing or sharing because you haven’t yet, I recommend you do so I can stop writing about this stuff and my sister can stop pestering every person she knows to sign it. Amelie, I love you. Thank you again everyone for the love and support and signing. I guess that dotted line I envisioned making a sharp turn ended up happening in a very strange way. Life is funny.
Health, Happiness, HEY MOM IM ON THE NEWS!
8 thoughts on “Breaking News”
Hello lovely Mary, I’m so happy to have discovered you and your fantastic blog via the #millionsmissing campaign and your amazing petition (THANK YOU for that!).
I really resonate with this post, particularly trying to avoid getting too attached to ME/CFS news and communities. For my own state of mind, I feel it’s vital to remain as positive and as hopeful as possible, as it’s so easy to spiral down into the depths of despair.
I’ve linked your petition to my blog and socal media and look forward to seeing your news segment once it goes ok – hopefully I can see it as I’m in the UK!
Thank you for being so AMAZING ☆
Love+Hugs to you
Great post, Mary! I think we all have that fear of being utterly consumed by the illness and our relationship to it. I go on Phoenix Rising often, and just as frequently don’t check it for a week. Sometimes you need to think about something else for awhile and, as you say, do something totally unrelated.
Your petition is great, and it’s astounding how many signatures it’s gotten. Maybe with a piece on #MEAction about the interview, we could attract a few more signatures!
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Hey Jaime! Having interests that are totally unrelated are nice. Help remind me of everything past the pain, which there is so so much of if we’re paying attention. I talked about the protest in the interview and the #MillionsMissing theme so I hope they include it! But it may not even air until day of protest, not sure. I’ll keep you posted for sure. Always interested in doing more to prompt signatures, involvement, and of course, awareness. I look forward to the day when we get to correspond about more than solving a disease, but hey, maybe this is predatory work for solving other disease. I have to remind myself there are so many others, still without cures and lacking awareness that are in desperate need too. We’ll get there. One step at a time :) Talk soon.
You’re doing great, Mary. Very impressive work! You are steadily becoming a force to be reckoned with.
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Aw thanks dude. I can hardly call myself a force..its just my thumbs twiddling away and posting the crap out of this thing. My mom yells at me to “put that thing down for God’s sake! I’m tired of looking at the top of your head!” But I knew if there were a way to fight for this cause that wouldn’t require physical exertion, so many with this disease would quickly jump on board– it’s just that we’ve never been well enough to truly organize. MEAction, Forgotten Plague, the petition, and the many other groups and committees are finally changing that and I think we’re finally going to start to see practical change and not just promises. Happy if I can contribute in any way, given that most days my only contribution is sarcastic narration of whatever TV show my mom is watching ;) Thank you for reading, writing, and the encouragement. Peace!
Woo! Good work! I’m so impressed with what you’re achieving!
I know what you mean about not wanting to dive in the community too much and have it consume your identity. I’m really happy talking about it to anyone who wants to know things, but just as long as I can talk about other things too. Sometimes I want to forget I’m sick (even if the nature of the illness doesn’t make that possible for long).
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Yeah, I hear that. I like to pretend too, or think about my future life where the optimistic part of me sees a “Healthy Mary”..running errands and working a job I care about and being insanely grateful the whole time because I know just how precious mundane crap like that actually is. I think we have to live somewhere in the middle of surrender–to where we are and what we’re capable of–and hopefulness, that things always change, and we truly have no idea what things could be like 10 years from now. It’s not easy but something to focus on. As for forgetting, are you sick in your dreams? At some point, the illness started penetrating my dreams and I was like wtf! I thought that was play-land! Hah, I’m learning in my Carl Jung book, that dreams are apparently much more than just fantasy. Hope you’re feeling “ok”..stay in touch! -Mary
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Weird coincidence, I had a dream in which I was sick last night. Sometimes it happens in dreams, sometimes it doesn’t. But my dreams are rarely vivid and hardly ever have much sensory detail, so it’s really more a matter of knowing I’m sick in my dream, rather than feeling sick.
I am ‘ok’. I’ve actually had a little improvement recently. It’s the first time I’ve had any improvement (in fact it had seemed like I was gradually getting worse for two years). I’m still very limited, but I’m insanely grateful the difference it has made.
You’re right about living somewhere in the middle of surrender. That’s exactly right. I try and explain that to people, but I’ve never found a good way to phrase it.