Fuel to the Fire

It’s been so long since I’ve typed at a computer, I think my typing speed may have dropped to under 60 WPM. Dangit. I should probably quit writing everything by hand in notebooks, if I want the words to appear anywhere else but in a stack on my bookshelf, that is. Also my handwriting is pretty indecipherable so I guess it makes sense to stick to the computer. It’s just that writing by hand has always felt easier, more accessible and immediate. There’s something more rousing about putting actual pen to page. I hesitate less. My ‘thinking’ mind turns quieter, and the space that must open in order for the good writing to come through stays that way, without distraction. Especially when I’m scratching away with a really great pen. Right now it’s a black Pilot G-2 07. Sounds like a damned air o’plane, and I’d even describe it as a “smooth glider.”. So, I guess I’ll just be transcribing from page to machine for a while. I need an intern. Any takers? I will pay in doughnuts. Why is doughnuts spelled like that?

This last month has been filled with a few major milestones. Most of them aren’t mine, but in the absence of personal excitement, the achievements of those in my inner circle are close enough–plus it’s something to tell other people. Like someone will say Whats new Mary? And instead of saying Um, nothing. I say Not much, but my childhood best friend had a baby! See how that works?

My childhood best friend had a baby. For real! It’s still hard for me to wrap my head around it, not because she’s the first of my friends to start a family. But because we’ve just been friends for so long, since we were babies in fact. We still laugh at jokes from when we were five! Sometimes I feel so young around her–I guess the kid in me comes out. Now she has one! A beautiful, alert, amazing little daughter. It’s all very exciting. I’ve decided that I’d like her to call me “Ont Viv” (what Will called his aunt in the Fresh Prince of Bel-Aire) I find it fitting, and if she has half the sense of humor of her mom, she will appreciate the spirit of this name. Of course, just like a milestone birthday, this big thing happened, and yet it’s not that different. Kaitlin and I are still the laughing, weird, sister-friends we’ve always been, except now there is a tiny little girl sleeping in the corner while we talk. Funny how everything changes, but the middle stays the same. Welcome to the world Bernadette Jane! Love, Ont Viv.

My other best friend, Dr. Emils, got married a week later. I was a bridesmaid: score! A Southern girl and a guy from Amsterdam equaled a classic New Orleans wedding with a dash of Dutch. Nice. Two days of wedding festivities and a crawfish boil led up to the ceremony at sunset, on probably the best day of weather New Orleans has had all year. Everything was perfect and she made such a beaming, beautiful bride. It was a happy, lively experience to be a part of and filled with a lot of love. All topped off with a long second-line led by a classic Nola brass band singing all the greats, including When the Saints Go Marching In. Weddings are the best. No, New Orleans weddings are the best. If you ever get the chance, go! I’m really happy for my friend, mostly because I could tell how incredibly happy they were together.

I’m also the last single girl on the planet. Sweet.

Engaging in a two day wedding weekend is a rare chance for me to see old friends, to be around people my age, to have a reason to dress up–or get dressed at all, for that matter. It’s not often that I get to do things like this. Not often I get to be 32. My life consists of a lot of solitude, which I like, but it’s always nice to get a glimpse of life outside the farm. If anything I live more like a 90-year-old dog lady, so I try to soak up every moment of acting 32. It’s tricky too, because I know that participating in things like this are not without consequence. Acting my own age comes with a price tag, so every time I decide to do it, I’m making a silent agreement. No one really knows the gravity of decisions like this. Or what’s involved in just showing up, or how  I’ll pay for it all later. The choice is so much more encompassing than just deciding to attend a party. I swear I don’t write this out of some martyr, woe-is-me mentality. It just struck me as I was swiping through photos of the big day, which was a really fun day–that it makes perfect sense why so many people misunderstand the illness. They don’t know the weight and preparation and consequence of partaking in something normal, like being a bridesmaid in a wedding. How could they? All they see is this:

unnamed
I did.

They couldn’t know how much time and tedious planning went on beforehand, including scheduling when I would bathe, to ensure there’d be enough time for rest between that and the next event. They couldn’t feel the certain amount of pain you just have to bare through things like this. They don’t see the plethora of medicine necessary to endure standing and socializing and lasting through a night. And they’d probably never consider such things, like a bath, or socializing, as exertion in the first place–As something that counts against you in your fight to keep strain at an absolute minimum. And that is almost always the goal. It’s obnoxious even to me, as I write it now. The strange reality of living with this thing. The exhaustive necessities involved in even small things. You’re always calculating how much every little thing will cost you, always trying to save up if you’ve got somewhere to be. But what really struck me is that nobody sees what the pricetag actually looks like. That’s because the pricetag comes later. They don’t see the subsequent week or weeks of recovery that follows at home. Which can look a little like this…

waiting
Poor Monty

When I thought about the outward appearance of illness, the timeline of how it plays out, what I show to people when I’m out and what goes on at home–I realized not only how easy it would be to get the wrong idea about the disease, but also how I might play a part in misrepresenting its reality.

For one thing, I want to emphasize that the reason I am able to even show up and participate in a wedding is because I’m currently at a functional-enough level to pull it off. There is a spectrum to the disease, there is waxing and waning, and there have certainly been times throughout the last 6 years when I wouldn’t have been able to stand at the alter. Even so, being “functional-enough” still means tedious logistical preparation, and a two-week long crash as a result. So, I’m still miles from where I once was, or should be. But many others are bound to their homes, many are bound to their beds, and we are all suffering with the same disease. I realize that people may see me when I’m in public and just not “buy” that I could be sick. And I see why this misperception persists.

But I also think that often we assign too much power to labels, and we attach our personal version or image of what “sick” should look like, and those who don’t fit the bill are either doubted, ignored, or assumed sick “in their heads.” We should all consider the many forms that ‘sick’ takes, and acknowledge that even terminally or chronically sick people don’t look sick at all times. No one would’ve guessed my dad had cancer, and that guy was dying! Looks are deceiving, and this immediate tendency to mistrust what we don’t immediately see or understand results in a basic lack of humanity. I am probably at my most functional that I’ve been since 2012, but I still walk a very fine line. It can and does go south easily, and it still requires help from my parents, a lot of rest and recovery time, a ton of medicine and doctors, and a lot of supine time on my own. (With Monty) And I am a lucky one, for sure. I know that people who suffer with anxiety/depression, bipolar disorder, OCD, Lyme, MS, Lupus and other chronic diseases suffer with similar outer doubt and confusion because their illnesses are not always easily seen from the outside. Labels, symbols, projections; they’re all powerful things, and they’re something we should consider and adjust on the whole before we make up our minds about something we may know zilch about.

I think I feel the need to write about this because ever since I entered the world of MECFS advocacy last year, I came face-to-face with just how poorly understood the disease is, how much misinformation/pure fallacy is out there and dominating the conversation, and how many people are getting it wrong because of the name alone. (Another thing I understand, it’s a stupid stupid stupid name.) I also have to consider whether I am helping to change and fix these misperceptions or if I’m at all contributing to them; and if I am, what I can do to fix it. I thought a lot about that after the wedding while looking through such beautiful pictures from the day, from the confines of my bed, knowing I wouldn’t leave home for a while. I didn’t think critically about this before last year, but I’ve learned up-close how much these things matter. The problem of disbelief is so much larger than gossip or personal dramas. This is literally public opinion shaping policy. It’s allowing the lack of intervention on a disease affecting millions of our own and many millions more around the world. How long will we allow people to suffer? How long will we let the accountable people look the other way? The world is looking at us and our treatment of this disease, and we are totally blowing it.

As soon as we show serious interest, I know other countries will follow suit. I know we will also make important new discoveries and possible cures. For now, we are at a stalemate that is costing millions of lives and billions of dollars. It’s almost hard to believe it’s true or possible after so long. And yet, here we are…

In the last year there has been awesome and much needed support from the public. The many signatures on the petition was surprising and still continues to humble me. I should say, it was that petition with such a substantial amount of sigantures that scored me the local news spot, a meeting with the Louisiana State Director (whom I spoke with for more than two hours about mecfs) and the reason I had a follow-up with our Senator Bill Cassidy. There’s more on the horizon. I’ll write more of that later. But our fight to be recognized, pursued and funded for biomedical research has come closer than ever in the past year, and we have to keep up the momentum. To quote my mom, “The timing could not be worse.” Hah, she is right. Politically things are somewhat of a shit-storm right now, and the potential for a slashed NIH budget on the whole obviously doesn’t work in our favor. But with the recent diagnosis of my sister, the possibility of backtracking our earned success, I have a renewed fire to fight and faith in myself, the advocates, the public, and the system, and an unrelenting hope that we can and will fix this. The timing might be terrible, and yet the truth is, there’s no better time for change than right now.

There are so many people in the advocacy arena who are doing big things–as for me I will continue to campaign for awareness in all ways I can think of, and restart petitioning for signatures. But I think possibly the most powerful voice is that of the public– not from those who are sick, but from those simply who see the injustice that’s happening. That’s who we need to hear more from, and seeing the amount of healthy people who have signed the petition already restores my faith in people all over the world will come together and make this happen. Thank you all again. Here’s to the next 40,000…

Health, Happiness, Fire

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10 thoughts on “Fuel to the Fire

  1. Saw your link on Jamison’s blog. I’m so glad you were able to manipulate your plans and your energy to be in the wedding – the memories are worth it. I hope the crash was not too deep, if you had one, nor lasted too long. You look lovely in the picture.

    I managed to attend my son’s wedding (I have CFS, too), and survived. It wasn’t good, but I was there. I am a lot older than you, and have missed so many things in my kids’ lives.

    My thing is writing, too. I have turned myself into a novelist. My debut novel, Pride’s Children, has one of three main characters with CFS. It’s on Amazon (I don’t know if you have the energy to read big fat novels – many of us don’t), but write me for an electronic review copy if you’d like to try it. There is a several-chapter Look Inside on Amazon. Absolutely no obligation.

    I try to write every day – and I’m working on the second book of that trilogy. It may take me several years – but I hope not as long as the first one!

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  2. When I read your posts and think of your struggle Mary, I feel my dad’s presence. I don’t know if you remember the photo of my dad bald, wielding a bravehart sword in the backyard in his favorite pajamas that swallowed him up, but that image comes to mind. You are so much like him in so many comforting ways but in moments when you are so honest about what you are facing I see that same spirit. Keep fighting and sharing your journey with us and we will continue to pray. Xoxo

    Liked by 1 person

    1. Awww Emily! That is such an amazing and kind thing to say, and so encouraging. Thank you. I totally remember your dad bald, sick, and still by far the funniest, happiest, most fun loving and hilarious guy to be around. I STILL reminisce about our trip to Florida and your dad singing “lucky” by Britney Spears but inserting his own words to the verses because he didn’t know the real ones. And when he’d sing it all four of you would yell Daaaaaad!! Those are the wrong words!!! And he’d just laugh really loud and start singing singing again. That was such an incredible time to have with all of y’all! I’ll never forget it. I think your dad and my dad are up there high fiving and making stuff happen :) I can’t tell you how much it means to read your words, and I hope you know how proud he’d be of all four of you and how beautiful each of you are and have become. Inside and out. Such an amazing family, I feel lucky and happy just to know y’all let alone be a part of it. I know we don’t see each other often but I think of y’all a lot and I swear I can feel the prayers that you all offer. As pathetic as my life can sound, I really am happy, and it has everything to do with the family we have. Love you duder. As your dad would say, kiss yaself! 😘😘😘

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  3. This post is probably one of my favorites, and I’ve read them all! I even pass them out to my patients; this one will join the others as one I distribute to show that ‘invisible illnesses’ are difficult to deal with in more ways than just the sickness itself. Sometimes I say that I wish I had cancer, because at least there’d be an acknowledgment of difficulties from others, a prescribed treatment, and a goal to aim for, unlike this illness. I’ve been through many misdiagnoses, some of which hurt me more than helped explain what was wrong – the so-called ‘wastebasket diagnoses’. Future doctors even roll eyes at those, which makes me feel so much worse than I did before. Like I want to feel this way? Like I’m faking this for some reason? I mean, if I were just drug-seeking, it’d be far more cost effective to jump straight to the heroin or crack, rather than navigate the healthcare system, doctors, insurance, deductibles, and most difficult, the doubt. As I’ve said before, your blog always comes at the best time for me!! Thank you for doing what you do. Idk what I’d do if I didn’t have your blog handy to send to family members and friends to try to describe what I’m going through!! My patients thank you as well!! Glad you were able to attend your friend’s wedding and you looked beautiful! Sorry to hear about your sister. I worry every day that I’ve passed this along to my children…. hoping I’m the only person affected in my family! Don’t think anyone else could deal with it, especially because exercise and diet aren’t the cure-all they claim them to be! (;

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  4. What is this about your sister? What was she diagnosed to have?
    Some times I just want to scream at my husband and my mother that just because I don’t “look” sick or have to go to the doctor every week (I avoid them like the plague), that yes indeed I AM SICK and that losing weight, or making myself get out and do stuff, or detoxing, or a hundred other things that they think I should do is not going to make me well. I have had this crap for almost 30 years and I have read tons on it and tried different diets, etc. but with not a single positive result. I am not the person I used to be. And I will never be that person again. And damnit, they have no idea how hard it is to accept that and by them making suggestions all the time as to how I would feel better if I just…….makes me feel like such a loser and I’m 62 frickin’ years old. Too damn old to feel like a loser. I thank the Lord that I have found bloggers like you and others who understand that most days just to find a reason to TRY to function is hard, let alone actually functioning. Boy, I wish everyone who has ever gotten the influenza and thought they were dying cause they hurt all over and felt so tired and even their skin hurt, could remember that feeling when we describe our every day life, so maybe they could have some understanding of what it is like to be us.
    Sorry, Mary, for the rant but my mom and sister are coming to visit me for the weekend and I just know my mom (who is 85 and acts like she is 30) will be on my case about having to lay down during the day and not being able to stay up past midnight….it is a mixed blessing to have her visiting. I’m sure most everyone who reads your blog has family members who just don’t get it. I am so happy you got to go to the wedding of your friend. It sounded amazing…like the kind of fun weddings you only see in movies. You looked beautiful!

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    1. Hi Robyn,
      Thank you for reading and I am so glad you wrote. To begin, my sister’s health has been declining since the birth of her second baby a year and a half ago. Two months ago she was diagnosed with mecfs and is sicker than me right now. The third person in our family to be diagnosed–I still can’t believe it and am pretty heartbroken watching from the outside what it’s done to her. My next blog will explain all that…Anyway, I know exactly what you mean, and it just is seriously impossible for healthy people, especially those for whom exercise makes them feel BETTER, to understand. “If you’d only try (insert some bullshit)” is like nails on a chalkboard for someone who has been sick for decades. Doubt is not a battle most people have to fight on top of their illness, but for whatever reason, it is with this one, for now anyway. I know very soon this battle won’t exist for us, when they find a biomarker, a treatment, a cure…all of it. It’s coming! So just hold on.

      Also, I wanted to share with you..I’m not sure if you saw the Ted Talk by Jen Brea, but it has been one of the most helpful things for my family and friends to watch in terms of getting a quick and true glimpse of what this disease is, what it’s like, what it costs. I strongly recommend you ask your mom and sister, as a present to you, say “for my birthday, for christmas, for whatever, I ask you simply to watch this”–and hopefully they will. Seeing it in someone else and with the explanations and history that she provides is super helpful and often validating for those on the outside. Here is the link:

      Tell them it’s only 15 minutes and it would mean the world to you if they’d watch. It’s at least a good shot at helping them understand. I know it’s hard, but keep on keeping on. Your struggle is not alone and is not silent. In some underlying, interconnected way, all of us with this disease are going through it together. SO I’m glad you’ve found support online–I’ve done the same. Please stay in touch! Let me know if they watch and how it went. I will pray they are open minded and hearted to your situation–I know that going it alone must make the fight 10 times harder. But we’re with you..I’m with you. You’re doing great. Hang in there. :)
      Love
      mary

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  5. Excellent post, thank you for writing. I’m glad to hear you managed to join your friend’s celebration although the cost is huge. It’s a constant struggle to weigh up the costs and benefits of any kind of activity isn’t it?
    Gentle hugs and I hope you find a spare spoon somewhere today

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    1. Thank you so much. I’ve been lucky to have some excess spoons especially now that the crash is over. I seem to do best in the springtime. It is difficult to weigh the cost/benefits, but also a gift to join in on the celebration–I hope that you get to partake in your own wherever you are! Thank you again for reading :) health, happiness, spoons, fun..the whole enchilada,
      mary

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  6. loved this post and congrats to your friend! don’t you get (more) tired of having to crawl into the mind of healthies and view things from their perspective and then have to behave accordingly…whatever that may be….

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    1. don’t worry. critical thinking doesn’t make me tired. just trying to find a way for us all to change the negative way we talk and experience this thing so that we can join forces and cure it! i know it’s possible, can’t wait until that day. thank you for reading and writing!
      mary

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