I have to admit something that feels a little shameful, and since this blog seems to inspire little dignity in me and zero reverence I’ll go ahead and do it.
Lately I’ve felt a schism crack inside of me. I don’t know what it is, a Campaigner and a Skeptic. I’ve been advocating these last two months since I began the petition asking the NIH for an increase in funding for M.E. I can’t tell you how tired I am of just writing that sentence, and probably if you’ve kept up reading this, your eyes just glazed over. And then I feel bad about feeling exhausted by it. I believe deeply in the campaign and I want more than anything for it to do what it set out to, which is actually to change things in a quantifiable way. This whole thing has been fronted by social media, so I’ve spent hours posting it on every forum, every ME/CFS Facebook page, (of which it turns out there are like 4,000), tweeting to the same groups and other organizations I’d only just discovered, and any and everyone involved in the CFS community, including celebrities who I’d read had the disease. This includes Sinead O’Connor and Olympic Soccer Athlete Michele Akers, but I didn’t hear back from either. I thought about singing a version of “Nothing Compares” to Sinead but rewriting it with lyrics that explained the issue and pleaded for higher funding. But I never did it. I head Glen Beck has ME, but I’m just not going there. I just…I can’t.
I did actually write a song, a two chord song on the guitar, so far titled “Chronic Fatigue Syndrome” but we’ll get to that later. Similarly I’ve been sending emails to both friends and strangers, asking them to do something. But doing this day after day can start to feel..a little desperate. Sometimes I didn’t like myself. It feels like I’m asking all these people to do something for me, people I don’t even know. But I’ve had to constantly remind myself, when I start to feel like some kind of annoying car salesmen with poor boundaries, this isn’t really for me, but for something so much greater. It always has been. One look at the comments page of the petition and it’s so clear that we need help, and we’ve needed it for a long time. So if I’m gonna go for it, I need to go for it. STOP BEING A PANSY, in other words.
Despite many people and organizations reading my story for the first time, I find myself rolling my eyes at my own account. And I think God, what’s wrong with me? Where’s my pride for this fight? I have to remind myself that this has been a 30 year injustice that started before me, and I am just trying to help fix it. And then I find myself even struggling with that word. Is this really an injustice? And I realize when I ask that, it’s coming from a failure of perspective. The insecurity considering my own experience with this illness, and my sense of normal, which is inside out and backwards. Even though being sick has been the hardest battle of my life, I still look around at things and think “But I’m OK.” Sick or not, I can find ways to make it all work. I have so many people and so much love behind me that I know I’ll be OK. But there are 2 obvious flaws in that thinking. To begin with, when I really break it down, I think
Mary, you’re living in your parents pool house. You aren’t able to work anymore. Sometimes weeks go by without leaving the house or seeing anyone even close to your age. You live in a town you have no connection to except for the pharmacy and three doctors. You hang out with your parents A LOT. Last week your own mother washed your hair for you in the bath because you were too weak to do it. And showers, let’s not even talk about showers. The point isn’t that my life not being normal is the problem, it’s that I’ve become so accustomed to what the illness has done with my version of normal. I forget, this is actually kind of a huge mess that I’m just living out as best I can, one day at a time. I don’t plan things, I can’t keep them. Somewhere, I sense a clock is ticking. It can’t last this way for long, right? And if it does, would I be OK with a life like that?
So is this an injustice? Yes. Read everything that’s happened with this illness pertaining to the CDC, HHS, and the NIH over the last thirty years, and it would be hard to call it anything else. Just because I’m surviving and ‘OK’ doesn’t say anything about the millions who aren’t.
And that brings up the second flaw in my perspective: I am not nearly as sick as so many others who have this disease. There is a scale to the illness in terms of intensity. A portion can function partially, but it’s hard to call those who are at the other end of the scale “sick.” Their bodies are shutting down. Confined to one room, unable to talk or tolerate sound, eating through a tube. Would we call that living? So many people have been sick for decades, their husbands or wives gone because life with this disease hugely impacts relationships. Some can’t understand it or even really believe it. One woman told me her husband divorced her because, he said, “I can’t watch you slowly die anymore.” People, especially husbands, hate feeling like there’s nothing to do for it, no way to help. And at this point, that’s basically where we are. You’re lucky to find a doctor who knows much about it. All of this reminds me; sure, you can make lemonade out of lemons, but there is a far deeper issue at play here, and it’s been slowly building into what is now a health crisis. It’s like the equivalent of the Velvet Revolution- a calm, quiet crisis. It’s gone on gently behind the scenes, behind the noise of other major news, of more important health issues, diseases with names that don’t make a person stop and hesitate whether it’s “real” or not. So I have to remind myself, this is beyond lemonade, and this fight reaches for things far beyond me. This is for the thousands of people who are far and away worse than me, who can’t fight for the change that has long been needed. “Sick” is such an understated way to describe them. “Slowly dying” is more accurate, just like the woman said.
So, I need to stop feeling apologetic for fighting for this change. Yeah, it’s probably annoying on Facebook News Feeds, but I’ve seen my share of weird engagement albums of couples in urban settings, and political rants and pictures of peoples lives that are awesome that make me feel incredibly small and boring. So, I guess it’s OK to annoy with a petition for a while. It doesn’t mean I have to become a full-time advocate, but I need to see this thing through to the end, and getting petition signatures is really only phase 1. I need to participate (at least virtually) in the protests this week, because it matters to me, and I don’t know why I feel like I should keep it a secret that it does. The real work might just be beginning–getting the big dogs on the phone, and in person, and making the case. I will say, I feel more far more confident reaching out to these people with 33,000 signatures behind the request. Printed out, that’s over 1,500 hundred pages of names. That’s impact! And that’s what I was looking for. So Thank You, all of you. A petition doesn’t work unless the people sign. The next phase will be interesting and could take a while. But, as always, I will keep you posted.
I see big change up ahead. Monty too.
Health, Happiness, Justice
“Change will not come if we wait for some other person, or if we wait for some other time. We are the ones we’ve been waiting for. We are the change that we seek.” -The man, Barack
5 thoughts on “Me Vs. Myself In My Own Campaign”
Mary, you’re the sickest little sister I could imagine, but you are a rockstar to all of us who know you and read your words. All your efforts remind me that we need people like you, people who don’t lead normal lives, and view the world from a priveleged place, even if it feels unfair. While you have this illness, your life and actions make me very proud and give me someone to look up to, and I couldn’t be more proud of you. I admire your strength and wisdom and most of all the joy you manage to maintain, despite this bull#@$t disease you have. We all have our problems, yours are more serious then most, but the example you set is truly remarkable and I’m grateful everyday that you are my sister and Aunt Mary to my kids. You rock! Lets release our “Sick-furniture” line soon!
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I wanted to leave a really supportive comment, but am having a moderately foggy morning (not so foggy that I can’t read or converse, but foggy enough that I can really only be superficial and keep missing the right words and get my sentences all tangled and not nice and sleek … as this sentence is making painfully obvious) so I liked your post and hoped that would be enough. But then I realised this is one of the blogs where I can just say that.
I’m foggy. But you’re awesome. Keep being awesome. You inspired me to do some awareness posts on my personal facebook page. Which maybe isn’t huge, but I just thought if one person read something about cfs/ME and the state of research and stuff and learned something they didn’t know before then that helps in the long run. Maybe that person will end up on a board allocating medical research funds. Maybe they’re a doctor who decides they need to know more about this illness to treat patients properly. Maybe they’ll just know more and not say and spread ignorant things.
And I wanted that to sound way more fist-pumping than it actually did. I’m imagining a ripple effect, with your petition at the centre.
Mary, I’m always impressed with your ability to put into words thoughts that float around in my head but that I can’t grasp. There is a line in a wizard rock song ( I know, in my 60s and repeatedly reading Harry Potter and listening to wizard rock! :) ) “Place all your bets, and watch me lose, The life that I got, but I’d never choose” (by KwikSpell). Somehow it feels extremely apropos to those of us in the in the ME community.
So the question remains, how do I live a life that feels small, but it is my life that I’ve got at the moment. Do I spend my limited spoons on trying to make a simple meal or answer emails or a phone call? Can’t do them all without grave repercussions. It is insane to feel like this is my new normal while all around me people are planning their lives and living wide. I have no answers but reading your words help me to get a perspective. You are a remarkable woman who has made a difference in the lives she’s touched. Don’t forget that!
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Wow, what a kind and encouraging message you’ve sent. Thank you, from me and my mom, and Monty. She has been my lifesaver, caretaker, and she is sick too, but she always puts my care first. She says she can’t help it, it’s part of being a mother. But sometimes I know that it’s her who needs the help, and she’s hard to give it to! (German roots) Anyway, I haven’t experienced motherhood yeah, besides Monty, and even that love is unconditional. So I can’t imagine how deep it must go with a little being you grew in your body. What were we talking about again? Hah, anyway, thank you. I haven’t actually ‘done’ that much. I just happen to be living in the tech era where things are so fast and accessible and yeah, no door to door kinda thing. More like reaching thousands of people with the press of a button. It’s amazing and I’m happy to be a part of it. Thank you for the encouragement of my writing, I never know if I’ve put out something worthy or not, but I’m going to keep trying, and I appreciate your support–from a total stranger! The internet is cool. Thank you again and be well..as well as you can. And if it’s crappy, that’s OK too. Just keep going. Peace!
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Mary, you are the voice of millions of us out here either too sick, too tired or just plain too social media/computer inept to be doing what you are! Just remind yourself of all the things today that we take for granted that were started with one person with a passion or a mission for change. Or a heartbreak so awful that only by changing a law or enacting a new one, can they continue to live. I always think of the woman who started MADD. I don’t remember her last name but I am pretty sure her first name is Carrie. Change.org is such a wonderful tool to use and it reaches so many and we are so fortunate to be able to use that instead of door-knocking and calling and hand writing letters like most of the others had to do. Just you writing this blog has helped hundreds of folks cope with their illnesses knowing that we are not alone. That other people “get” us and to life one another up with encouraging words or tips and hints of how to make our daily lives better.
I know you are young and never dreamed this would be your life but it has had a purpose to it!!! Never, ever, forget that. No matter what is down the road for you, your legacy will be how you helped so many, many people with “invisible” illnesses be heard.
As a mother, I KNOW your mom must be incredibly proud of you and all that you have accomplished. She sounds pretty darn awesome (does she blog?) and a mother’s love no no boundaries or limits so the things she does for you are NEVER a burden or a bother. We do them out of a love that unless you are a mom, you can never fully understand. You two are an unbeatable team! And Monty is your mascot and cheerleader.
Go, Mary, Go!!!!!
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