An Open Letter to Myself, To Be Read 10 Years From Now

Dear future self,

Congratulations, you’ve made it to 41. If you’re still living in your parents pool house, don’t feel bad. We all move at our own pace. I hope this letter finds you well. You know, I normally hate that line, mostly because it’s hardly ever genuine except as an ice-breaking device used in emails just before asking for something, usually money. But I mean it. ‘Well’ is pretty relative term, but you know what I mean–better. Better than today. It’s November 5th, 2015.

For record-keeping, I’ll set the scene. I’m writing from bed, the computer in my lap and Monty sleeping on the edge in his spot. I am achy, heavy-bodied, and nursing a head-ache that now spans the entirety of my face. It’s strangely resistant to pain medicine so I use frozen peas to numb it. I feel the force of gravity pushing against every move I try to make. Standing up makes me dizzy and faint, so I’ll spend most the day sitting or supine. (POTS) My brain is fuzzy and clumsy. My thoughts come fast and then stutter and mix up on their way out. Writing is better than speaking. It’s more patient. My heart mimics hummingbirds and butterflies. It makes this audible “clicking” sound whenever I lay down, like my own cardiac stopwatch in which to keep time! My blood pressure spikes and drops, making simple things hard, like showers and teeth-brushing. (Dysautonomia) So I stay horizontal–a term my specialist uses and advises on days like today. But the Interstitial Cystitis makes this part harder. I peed 12 times last night! A new record. But who’s counting? This is how crash days go. Another part of the disease that goes mostly unseen.

Greetings From 2015
Greetings From 2015

But let me interject. The point here is not to belabor on about life with illness. This is simply the physical state of things, and the more important point I am making is that I am OK.  I’m not living a life that looks anything like the one I planned for, (haha, plans) but I’ve found meaning here too. I’ve forgiven what my life was supposed to be, and grown into the one I have. It’s smaller-sized than the one I dreamed of, and it bewilders more people than it impresses, but I’ve actually learned to like it here. Every day despite health and money and a recently sad surplus of dead animals in the pool, I crawl into my bed at night and it hits me that I’m OK. A small flick on the side of my head.

Is it a contradiction to say you’re fine but also expect change on a large scale? I hope not. But it’s partly the reason I’m writing now. I detect a shift underway. I hear a slight buzzing sound behind the drone of everyday life, and it hints at considerable change to come. I hope in time this letter will be a relic from an era long gone. I hope it will be a nearly humorous account of the way things used to be once, but that it won’t sound all too familiar. I hope that physically I’ll just barely be able to recall it, like the name of a childhood teacher on the tip of your tongue. That’s my hope, but who can know? Just in writing this I can feel my future self alive somewhere; that she exists on some unknowable plane, and that when she reads this letter it will make her happy.

It’s my belief that if I’m not cured by the time I read this, that my mom will have shot me like I made her promise to. Only joking calm down. If I’m not cured, I expect at least to be a much higher-functioning version of my present self. I should be able to work at least a few days a week, to attend (and dance at) a wedding, or to go on a bike-ride and not crumble for days after. I don’t see this as wishful thinking or as the result of divine intervention. I see FDA-approved, effective treatment options as an only natural, foreseeable byproduct of the serious research to come by governing agencies like the NIH and the CDC. As I write this, there are zero approved treatments. My 25 pills a day are mostly bandaids on a broken knee.

Up until now, the world hasn’t quite known what to do with someone like me, like us; chronically sick people who don’t get better and don’t die. And I understand their unease. This is all relatively new, and we just haven’t developed the etiquette for it yet. But a bigger issue exists in this realm, and it’s having a disease called Chronic Fatigue Syndrome, a name so comparatively small and demeaning, I don’t even like to say it out loud. It’s hard to keep my own eyes from rolling. Instead I call it Shit Turd Disease, which feels no less valid or serious, and has the added bonus of a cackle at the end. Out in the world, I don’t really feel like a person who has a disease. I feel like someone with a strange secret to keep–Something to talk about in hushed, apologetic tones. Or something better not to talk about at all. Explaining and defending it takes an energy you just don’t have. So you stay quiet, but there’s a loneliness in that choice.

And there are consequences to it. For decades, the voices of the sick have been drowned out by the loud, proud professionals with strong opinions about our disease. Their ‘efforts’ are continually led by the notion that we can be cured with exercise and positive psychology. This was what the influential $8 million dollar Pace Trials set out and claimed to prove. Exciting! But upon 3rd party inspection, methodological flaws were found throughout the process, basic but crucial scientific protocol was neglected, and there were blatant conflicts of interest: Trial scientists had longstanding financial ties with the disability insurance companies who’d rather not foot the bill for those with Shit Turd Disease. And yet these trials still helped solidify the narrative that these “non-treatments” were legitimate. For more than thirty years, this idea has fueled study after study, it has shaped public opinion and policy, but it has not actually made the sick people better.

But here is where I detect the buzzing. Our attempts to improve public awareness and patient advocacy are hindered by the obvious: We’re a sick, slow-moving crew, and many of us are house or even bed bound. Fighting to be heard requires a vigor that’s diminished when you’re sick. I imagine a CFS Race for the Cure! would be more like a Saturday Night Live skit, with an embarrassing amount of joggers passing out on top of one another thirty seconds after the gun went off, half of them being hauled off in ambulances. But we’re living in the age of technology now, without the prior limits that hindered communication and networking. Now our collective voices can be heard without us leaving the house, and that matters here. The digital age provides for a new accountability and transparency where there was none before. Maybe now that professionals know their work will be seen by many sets of eyes, they’ll be less inclined to make those silly mistakes like those of the Pace trials that deeply effected the lives of millions of people. All of this helps to balance out the power. This is how we change the direction of the fruitless path we’ve been on. We have always had the right, but now we have a platform–thank you internet– where we can be seen and heard, and we have to use it.

Of course, people will stick to their guns (even in the face of gun laws they’ll do it!) And that’s OK. This isn’t actually about proving anyone wrong. No, that is the egos fight and it doesn’t belong here. This is about knowing that silence never yielded progress, and that to enable the truth we have to listen as much as we talk. It’s about ending an era that has ignored the complexity and vulnerability of what is true for the convenience and righteous facade that comes from salaried opinion. At a basic level, this is a humanitarian cause. What does it say about us that we treat the sick this way? What we do to each other we do to ourselves. So let’s do better.

Curing and treating this disease has never been an issue of capability, intelligence, resources or technology; It’s simply a matter of the right people having the committed willingness to try. If we begin there, it will be enough. But that means really beginning. It means treating this disease like an actual disease, and not some commonplace complaint or nagging ‘woman’s issue’ to be fixed with yoga. It means at least 10 times the amount of annual federal funding toward research. It means leaving the politics and scandal and doubt in the past, and surrendering the ideas that have proved ineffective. Let’s begin with purity of intent–to understand and cure it so people can get their lives back. Then I can stop writing these weird letters to my future self.

There are a lot of different ways that the next decade might play out. I could very well be cured, married with babies, living the kind of fast-paced, busy life I watch other people live. I always imagined I’d have a daughter and name her Catherine after my mom. Of course I might still be sick, an unpaid blogger still living in my parents pool house. I’ve already reconciled both possibilities. I’ll be OK. But then again, I’m not alone. This is much bigger than me.

This is millions of people at the mercy of a disease with a bad reputation and a worse name. And I’ve realized it’s useless to keep crossing my fingers about necessary change. This letter isn’t written out of hope, but as a nod to the future that I feel called to make better, starting now. It’s a reminder that change is possible and it always starts small. It’s my own refusal to stay quiet, especially on behalf of the many sick people far worse off than me, too sick to speak up. When I read this again, it shouldn’t matter whether I’m sick or cured. If I’ve done the work, I’ll be reading it from a better world; where sickness is not a secret, where we gravitate toward the truth, and where the silenced voices are finally heard. If that’s the world I’m living in, this will be the reminder that we did it, and that we’re OK. A small flick to the side of the head.

See you in ten years,

Mary
And Monty

Advertisements

15 thoughts on “An Open Letter to Myself, To Be Read 10 Years From Now

  1. Hi Mary,

    I too am one of the ‘silent minority’, battling Chronic Fatigue, type 1 diabetes (28years, and we literally get a medal if we last for 50), kidney problems, high bp, background retinopathy, and the list goes on and on…

    You certainly aren’t alone. I think I’ve been in bed for years, it’s the only place that I don’t get agoraphobia in anymore. I get really nasty nerve pain in my feet, hands and legs but I go on living like another 30 something with chronic everything, and now to boot I’m on your site having a whinge.The point is to do your best, and that’s what you’re doing because you’e doing it, if you get my meaning. So please continue to do it, so that the rest of us can read about it.

    Like

  2. I love that you are taking the positive advocate stand! I am 54 and have had Fibro for 16 years; my adult daughter, 26, got the same syndrome at 18. I did struggle through school, and I just blogged about my experience with doing it. It helped me to feel much better and I outlined my thinking about that, because it would seem to cause the opposite reaction. I am going to follow you! My blog is all about advocating for self advocating. Lots of research and different methods to try to help yourself. I am going to be writing a program for all of us with these invisible syndromes, putting it together now. I might decide to get the younger generations input, thinking about doing that makes sense, right? You would be the first person I would want to discuss this with.
    Keep doing you; I know the positive attitude is not always so easy, just look at some of “rants”.
    <3

    Like

  3. I’m the same as Melissa – started following when the fb post went viral. When I read about that study, I thought of you and my heart sank. You’re right, how can we humans treat each other like this. What we do to each other we do to ourselves. But you have already made a difference and I know you will continue to do so! Keep on fighting! Medical discoveries are beginning to come out showing an “actual” physical cause is responsible for diseases previously dismissed as ‘psychological.’ (Imagine that!) It’s slow going but I believe it will continue to pick up steam, and very soon the medical profession will confirm things the rest of us have known for ages.

    Liked by 2 people

    1. Yo dude! I really appreciate the encouragement.. That’s what I meant when I wrote about the “truth”.. It sounds so dramatic but we honestly have neglected to look at this issue seriously, and millions are paying the price for it. That’s why I’ve gotta fight it until we’re seen and heard. Thank you for reading and sharing.. The more awareness and knowledge we spread, the better. I am working on an online campaign to increase funding so stay tuned.. Will need lots of signatures for that one ;) y’all hang tough, and thank you so much for reading and keeping up!

      Liked by 1 person

  4. I discovered your blog way back when that fb post went viral. I laughed and enjoyed that post, but ended up subscribing because I realized you could teach me about something far outside of my scope. In my eyes, you are already leading the charge. Feel proud and accomplished; what you are doing matters!

    Like

    1. Thank you so much for saying that Melissa.. It’s pretty hard to feel like anything is happening sometimes but I know that awareness is something ican contribute to so I am going to keep trying. Thanks for reading and for the encouragement.. It matters to me. Keep on keepin on :)

      Like

  5. Mary, I hope and pray in 10 years we ARE better off than we are now. I fight every day to stay out of bed and keep doing the things I have to do. It is a real struggle some days. I hurt so badly and am so tired the furthest I make it to is the couch. I have people depending on me to do a job that I find increasing harder and harder to do and have committed myself to a higher education, going 3 days a week for 2 classes. I think to myself how am I going to do this with the winter closing in and my symptoms getting worse. At least this past week it wasn’t to cold and I was able to get out and about. My aqua therapy is almost over and then what am I going to do to keep feeling human. Granted it’s only 2 days a week but it does help a little. They upped my fibro medication (Savella) and I’m feeling more tired than I had. I don’t get narcotic pain relievers so I am always in pain and no one understands just how hard it is to roll out of bed every morning. I want to throw my hands in the air and say “I give up” a lot of days but I really want to do something other than sit on the couch or lay in bed for the rest of my life. I want that college education so I can become a therapist to help people who have gone through traumatic situations like I have. I will keep plugging along till I get it. I’m just sorry that it took me till I was 54 to get off my butt to do it.
    I truly hope in 10 years when you read your letter that things have changed for the better for all of us that suffer from Chronic Fatigue and Fibromyalgia and other silent diseases. Life like this sucks big time.

    Like

    1. Dang, it is hard but important to hear about other people’s struggles with this. Can I ask why you don’t take pain killers? I know there is a stigma, but I think I’d really be stuck in bed without them. I hate to hear how much you are pushing your body.. I know from experience that you can push yourself into a crash and not recover.. That is the problem with this disease. So poorly managed and treatments that make us worse instead of better. I wish you strength and relief and hope you’ll
      Keep up here on the blog and check in. It’s good for me to hear everyone’s stories.. These are the voices that need to be heard and im going to work hard to make sure that happens. Health and happiness to you, hang in there.

      Like

  6. It’s so hard to struggle with feeling like sh*t every day and not being able to do anything about it…or as much as you possibly can do with no positive results. Keep fighting dear. You’re doing the best that you can.

    Liked by 2 people

    1. It is a struggle for sure.. And it can feel like you’re alone in it but if the community around this blog has taught me anything it’s that so many of us are fighting this battle together.. Which is why it’s important to speak up and share our truths.. Even if it’s just in the comment section of my dumb blog. It’s good to remember that were in this together, and I’m
      Going to keep working hard at increasing awareness and the truth, and hopefully increasing federal
      Funding for research so we can all get better and get back to life. Hang in there, and I’ll hope you keep up with us and check in once In a while.. It’s good for all of us ;) all the best.

      Liked by 1 person

  7. I really enjoyed this. As a twenty-something who struggles with fibromyalgia – and a lot of paranoia over my own feeling of aimlessness – a lot of this hits home for me. And not having all of the struggles that you do, it helps me to understand those who are having a harder go of it than I am.

    Oddly enough, I have the same whim of having a daughter and giving her my mom’s name – Elizabeth – as a middle name. I visualize it well in my head, but sometimes wonder how I would ever take care of a child when I have bad days. That being said, I know I could do it on my good days.

    I’ll be keeping you – and possible future Catherine – in my thoughts. :)

    Liked by 2 people

Leave a Reply. It's nice to hear from ya.

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s