happiness – FibroM.E.-Awesome

The Grays

Published on December 7, 2015December 9, 2015 by Mary Gelpi3 Comments

The Grays: As in, A Case of ‘The Grays’ is an amorphous cousin of The Blues, less concrete and more insidious. Where The Blues are a despondency with traceable roots, a break-up say, the source of The Grays is less clear, confusing the host and lengthening the distance he feels between himself and the world around him. It’s a removal of sorts. It doesn’t make everything feel bad as much as it makes everything feel the same–it removes ‘specialness’ casting all things in the same ordinary light. It becomes hard to see yourself clearly, to feel what direction you should go in. A person with The Grays can’t point to a particular occurrence and say Aha! This is the source of my sunless nature! All he can say is that a colorless film has covered his eyes, rendering all choices, all feelings, all consequences the same. It makes trying and not trying essentially the same–it dissolves meaning, in other words. Love, apathy. Good, bad. Going, staying. Same, same. Does he want an apple? Sure, he’ll take an apple. But it would be just the same if he didn’t take the apple. Eating it won’t bring him any satisfaction, and not eating it won’t make him wish that he did. Take it or leave it. Take anything or leave it. Same, same.

Correct, This is what I got when I googled the word Gray. You’re welcome.

I can’t say exactly what kicked me into the slump I have named The Grays. I suspect it had a little to do with the crash I’ve been in for a few weeks now and from which I am still not recovered. I know that often when my body gets overwhelmed for a long period of time, eventually ‘it’ seeps into my mind, my emotions, and I feel psychologically overwhelmed as well. I’ve been short of breath on my feet lately. Dizzy, heavy, and extremely weak, particularly when I try to stand or walk or move around. My legs feel like cemented blocks that are so heavy to pick up and put one in front of the other when I try to move, that I mostly haven’t. It’s been that way for weeks now, and staying sedentary too long would make anyone restless I’d guess. It gets old having to put off things until tomorrow that you already put off until today, over and over and over. Your surroundings start to grow stale, and wanting to change them but being too sick to get out of the house becomes a whole other challenge. Of course, this isn’t my first rodeo. I’ve been through crashes much longer and worse than this, and I’ve become pretty good at riding out sick times without giving in to despair. But that’s the thing– this isn’t really despair. It’s not heartbreak or grief or anger. It’s more like a hole where my feelings are supposed to be. A lack of feedback, a lack of identity, an inability to see myself in the world and where I fit in it. It’s this dimming effect on my surroundings and myself, blanketing the normally vibrant world in the same, colorless hue. Gross! This will not do.

Another entirely meaningless photo that came from googling gray.

The worst part about the Grays is not being able to easily or immediately pinpoint their cause, making it much more difficult to navigate and fix. It also usually means feeling bad about the fact that you feel bad, because you feel like there’s no real reason, or maybe no good reason, that would explain the source of your gloom. So you feel more bad. Have you ever cried and not really known why? It’s the worst! You start crying more because you’re like “Why am I even crying right now?!” Which results in a louder eruption of wailing, sometimes causing you to snort and sniffle, which might lead to a weird outburst of laughter, highlighting the absurdity of it all but then segueing back into loud sobs and a near certainty that you must be insane. It’s an emotional disco party! The funny thing is how absolutely lost I can feel in the midst of crying, buried and convinced there is no way out of the state I’m in. But almost immediately afterwards, in those moments of recovery where you’re sniffling with a tissue and taking those shaky, post-sob deep breaths, I always feel relief. I feel incredibly lighter and way more capable of finding resolve. There is always a rejuvenating sense of clarity–even if I’m still uncertain about the cause of my feelings. I can see myself again. I can see the other side.

I think sometimes the Grays emerge because I endure pain and I’m not always conscious that it hurts. Sometimes things make me sad unconsciously and I’m not so aware of them of them, or I just don’t understand why it’s painful, so I end up not giving it enough attention. I brush it off or just move on the next thing. But you can only do that for so long. There is always a breaking point. The pressure builds, the feelings need an outlet, and so there you are crying your eyes out for an hour after finding a dead mouse in a mouse trap. (True story)

But couldn’t it be said that I’m just a huge animal person and given that even dog food commercials make me cry it wouldn’t be unreasonable for me to cry at the sight of a dead mouse? Maybe. But I don’t think it’s that, completely. All things convey life and death in their own way, and they’re all reminders of the strange contract we had to sign. But I think it’s simpler than that and I’ve been sort of dense about it. I think the truer source is that sometimes, being sick for so long really just gets old some days, and I don’t feel strong enough to smile about it and say that I haven’t given up hope. (I haven’t, and I really never will.) But some days, maybe it’s OK to just admit that things are really hard right now, that life is getting you down, that you wish you could change the things you know you cannot change. That you’re blowing it with the Serenity Prayer! Perhaps the Grays are a result of not giving our inner selves and feelings enough examination. A voice. It’s not that we should complain and whine. It’s more about acknowledging what is true despite the vulnerability it will highlight. Maybe sometimes you just say it out loud and look it in the eye and admit hey, this hurts. This is hard. I need some help. I think voicing the feelings and allowing yourself to be sad without immediately trying to fix it, helps open up a space between you and the pain, and within that space is where you can start to understand and move through it. Awareness helps bring even the smallest amount of light to whatever hole you find yourself in, and that light illuminates what’s on the other side. Finally, you start to see a pathway out. But it means going through first.

The challenge is always to express and validate the feelings without succumbing to them, getting stuck in your story. The opposite of dismissing the pain is letting it take over, using things that have happened as a crutch for negativity or allowing them to defeat your hope and enthusiasm. This is what encourages the victim mentality, something I work consciously to stay away from because it seems unsettlingly easy to go there and stay. It takes hard work to locate and live in the middle of these two roads–and I’ve found myself lost many times, too far down one or the other. Saying it and feeling it too much, letting it dictate too much of me. Or convincing myself it’s not worth talking about, to deal with it alone, not asking for help when I actually need it. Finding my way to the middle is where I see things the best. I can see my life from a distance there, unencumbered by feelings about it. I can see my true self without my opinions distorting it. I can reconcile who I am with the kind of life I want to live. I think so often the source of my pain is that I’ve convinced myself I can’t do or achieve the things I want or am meant to because certain things, like being sick, are inhibiting me from achieving them. But when I reflect deeper about this I think the opposite is true. I think what I am meant to do and be is actually born out of and possible at all because of these very unique conditions–the ones I didn’t choose. The ones that were not a part of the plan. Perhaps they are in fact what’s allowing my real purpose to unfold, and not hindering it at all. Maybe all of this comes down to a simple shift in perspective: stop seeing things as road blocks that are actually opportunities.

Of course, it’s always easier to write and say these things than it is to practice them. I know that words only have so much power, and just writing them down doesn’t make them any easier to live by. But writing has always been a relentless reminder of what is true and good in my life. It helps sort out the real from the meaningless. It seems to function as a mechanism of discernment for me; a sifter of stories from truth. Thomas Keating wrote that “Discernment is a process of letting go of what we are not.” Sometimes I find peace in sitting down to write, because it forces me to come to terms with the truth without feeling defeated by it. Like Nepo says, The instant fish accept that they will never have arms, they grow fins. Sometimes it helps me remember that despite being sick, I can still become who I am meant to and do the things I find most important.

I find that opening myself to the vulnerability of what might be revealed, I usually unlock some truth when writing that I’ve forgotten along the way. It forces me to look past the petty things that sometimes I lean on too heavily on. It encourages me to examine the deeper meaning of things that on the surface can seem painful without a purpose or value. I am often surprised by what emerges when I sit down to write–it’s rarely what I intended or consciously planned to address. I know it sounds a little pie in the sky, but often the words don’t feel like they’re coming from me exactly. Sometimes I don’t even totally understand them. I feel more like a medium thru which other sources are using to reveal more important things than whatever crap I planned on. This is when I understand our passions being called “gifts.” The words are not mine– More than writing well, my job feels like listening well, and then very carefully relaying whatever’s coming through. It’s a sort of prayer, therapy, and mediation in one.

I think the connections and truth and awakening that writing provides might be what all our passions do for us (and the world) on a deeper level. Gardening, physics, furniture making, piano, whatever–they’re all devices that help us see the world more clearly and to feel distinctly our unique “spot” within it. They’re a way to figure ourselves into the cosmic equation and have it equal One. They are reminders of our humanness. All I know is that the longer I go without writing, the further I feel from myself, and the more distant I feel from the world. Lost this way, it becomes much harder to find that path to the perfect middle where I can myself and the world with the right set of eyes.

It might seem surprising since I tend to do it a lot, but I am always extremely cautious to write about the dark stuff. I always hesitate to post during the hard days, not out of fear really, but more because I know that what I give my attention to is extremely important both in my physical and mental health. I have to be careful about where I direct my focus. My hope and my experience is that writing things out helps to reveal things bigger than the pain. It brings a level of consciousness to wherever I am, and that helps see my reality better. My goal is always to find something good to take away even from the crappy times, because for some annoying reason, pain is extremely educational. But in order to grow from it means we cannot stop at the pain. That’s where we start–the reaching out, sharing, crying, and writing all provide a way to feel and understand it, and also to keep moving forward. I’ve basically done all of those things in the hours I’ve spent writing this. So thank you for letting me go on for so long. Whoever you are. Because you know what? I don’t feel so buried by these Grays anymore. I haven’t succumbed to stagnancy and I feel a space between the pain and me. I feel more connected to the world, and I’m starting to see it in color again.

Health, Happiness, Away from The Grays

A Baby Was Born

Published on July 24, 2015 by Mary Gelpi4 Comments

I really didn’t think we were going to make it. Amelie’s due date was June 18, and my mom and I were scheduled to arrive on the 16th which, in hindsight, was cutting it rather close. She started having contractions on the 14th and by the next day I was convinced we’d never get in there in time. I prayed that he’d wait for us but it was pretty clear by then that the baby would arrive before we would.

Somehow, despite multiple airplane delays and three days of threatening labor, my mom and I arrive to California, pea still in the pod. He waited for us after all. We arrived late, and everyone was tired, mostly Amelie. As we all turn in for bed, I tell Amelie and Keegan to wake me up if anything happens during the night. I don’t want to miss a thing. I am weirdly excited getting into bed, the way you are on Christmas Eve as kid. I finally get to witness the miracle of life. Score.

Roughly 5 hours later, still very dark outside, I wake to Keegan whispering in a firm voice at my door. Mary. Mary! I am still half asleep, Wha? I mumble. Her water broke. We’re going to the hospital. Yes!! This is what I had waited for. I knew something would happen tonight! I dressed quickly but hesitate a moment about what to wear. Are jeans appropriate labor attire? In my peripheral I spot Amelie, walking ever so cautiously down the hallway toward the stairs. She’s in a bathrobe, moving like a ghost, groaning in pain. Are you OK? I ask, dumb question probably. Hurry, she says. We need to go. I quickly put her arm over my shoulder and we walk gently in unison, a conjoined ball of sisterhood floating down the stairs. Where’s Keegan? She asks. I assure her he’s coming. I lie, I have no idea where Keegan is, but I assume he didn’t run out on us.

We walk out onto the driveway, the tiniest bit of dawn peaking at the horizon. Amelie is barefoot. I help her into the front seat of Keegan’s man van. I climb in the back but notice there are car seats on both chairs. Obstacle! I wedge my large butt into the bigger one, which doesn’t really work, so I sit perched up on top of it with half of me hanging off the side. Just as she’s about to ask where Keegan is again, we both see him, a spectacle headed our way; Keegan, running out of the garage as the door descends on him, holding a giant blue rubber ball in the air with both hands, as though it’s a trophy. What is THAT? I ask. Amelie tells me it’s some kind of birthing bouncy ball thingy that helped progress her first labor. But I don’t need it this time! she says, but Keegan is already stuffing the large balloon ball in the backseat, trying to wedge it between me and the two carseats. It’s making the rubbery noise that balloon animals make when being configured. I am laughing but only to myself. I don’t know if laughing is appropriate yet. You never know! he says, and gets into the driver seat. As he starts to shift the car into drive, Amelie stops him with a request: OK, I need you to go slow over the bumps and turns and stuff. But seriously go fast because I don’t think we have a lot of time. I hear Keegans signature cackle. OK, he says, hitting the gas, but easing down the curb of the driveway like a champ.

Now we’re driving fast on the California highway and the roads are all ours. Amelie tells Keegan to call the doctor on the way. I am rubbing her back like a boxing coach, but she says it feels good so I stick with it. Keegan talks to a woman on the phone, which then Amelie takes from him. She tells the woman she’s “In full blown labor”– A phrase both her and Keegan will use numerously in the next hour. This also makes me laugh. Please make sure he knows I’m in full blown labor this time. Keegan has been running the red lights, but now we approach one and there’s a state trooper in the lane next to us. Planning to run the light and then continue speeding, Amelie tells Keegan to let the guy know so he doesn’t pursue us. Keegan rolls down his window and the trooper does the same. Keegan: My wife is full blown labor. Cop: OK. Keegan: I’m going to run this light and then speed. Cop: OK. The light turns green and we speed off in the van. Dude couldn’t have cared less.

I notice Amelie is taking really short breaths from the pain. I remind her to slow them down and try to exhale through her nose. It actually works, she begins taking good breaths. I don’t totally know what I’m doing, but I know deep breaths are better than shallow ones. And they say it in all the Hollywood labor flicks. I rub her shoulders and the big blue ball drifts over to my side again, crowding me back there. I laugh to myself again. I know I will remember this car ride forever.

At the hospital we get Amelie into a wheelchair outside and Keegan throws me the keys to go park the van. In the wheelchair Amelie informs the nurse that she’s in full blown labor and instructs the nurse to run. The nurse reminds Amelie that she is going to be OK but that they aren’t going to run. By the time I get the car parked and up to the room, she is being hooked up to IV lines and monitors with all kinds of wires emerging in every direction. There is a surprisingly large number of staff hurrying in and out of the room, performing respective tasks. Amelie has one concern; the epidural. I’m ready for the epidural as soon as possible. Can you make sure they know that? That I’m ready as soon as they are? They are asking her a ton of questions and typing in answers or writing them on a chart. I imagine that she wishes the questions would stop. I’m familiar with this position; being in pain, needing help that only someone else can provide, but first having to answer question after question–none of them seeming more important than the pain. The nurse tells her as soon as she’s checked into the system, she can have the epidural. The Holiest of Holy’s.

I am standing to the right of the bed, watching a machine hooked up to her which monitors the contractions. It looks like a seismograph. It strikes me what an interesting device this is. A qualitative way to witness someone else’s pain, to measure it even. This part sticks with me. I try to talk her through the bad ones. Since I can see them peak and descend on the monitor, I’m able to tell her when the worst part is over. I remind her to breathe deep. There’s not much else to do now besides refill cups of ice, which Keegan and I take turns with. It’s just like the movies. Amelie informs another nurse that she IS ready for that epidural, just so she knows.

Finally, the last of the questions are answered, and the man with the miracle appears in the doorway. He is glowing yellow and angels sing in harmony as he makes his entrance. Amelie perks up. Absurdly afraid of needles normally, she couldn’t wait for this one. It only takes a few minutes, and then the magic starts to work. You can tell because Amelie has color back in her face and relief in her eyes, as though she can suddenly breathe again. Not to mention she’s smiling, and much more chatty.

Now everything slows down. Keegan and I take a nap. I guess numbed up Amelie continued to labor. When I wake up a bit later, my mom has arrived with coffee and food. We eat and re-energize and prepare for the big show. Just a couple hours later, to the nurses surprise, Amelie is eight centimeters and the time has come. This is it! Yeah! The only problem is that the doctor is not here yet. He’s on his way from another hospital, but he is in traffic. Note: California traffic is different than Louisiana traffic. My mom and I sit at the bay window, on the lookout for Doctor James as the nurses quickly turn the room into a saran wrapped tent. There’s another doctor there in case hers doesn’t make it, but Amelie likes sticking to plans. It’s kind of her thing.

The nurse tells us he drives a gun-metal grey sports car. Of course. No sign of him yet, so my mom and I start singing Amazing Grace aloud in a two part harmony. She taught us this years ago– something about the vibrational energy of that song. We have sung it ever since when we’re in a bind, and somehow it always comes through. There we are, Amelie trying to hold off pushing, the nurses preparing the room like busy birds, and two women at the window singing in decent enough harmony, (I may have been a bit flat). By the third verse, a small silver sports car pulls up and a tall doctor rushes out. He’s here!! We all cheer. Amelie looks like she’s about to have a baby.

The doctor can barely get his blazer off and the scrubs on before she’s on her second push. I stand to the side between the doctor and Keegan. I even hold a leg! It all happens really fast. On the third push we can see his head. It is crazy. Amazing. Five pushes later, he is out. He doesn’t cry right away and the silence is paralyzing. I am worried but don’t say a word because neither the doctor or nurses seem concerned. It feels like forever but was probably four seconds. As Amelie gets both hands around him and brings him to her chest, he finally cries out. That weak, pathetic, entry level cry. The cry of alive. As soon as I hear it, I start to cry too. I never used to be emotional like this. But it feels good. Happy tears. He doesn’t even cry long. He gets swaddled and passed around to everyone like a perfect soft package. I watch his parents hold and love him, both grandparents, and then it is my turn. I can almost feel the love he’s been given already radiating from him. I think about his entrance to the world–how every baby should be this lucky. He’s alert, blinking slowly as he takes it all in. How he can already smell so good, I have no idea. I hold him and cannot fathom that any of us were ever this small, this helpless. Why do we ever convince ourselves we are meant to do this alone? Holding him I feel solid relief. Not just that he’s OK, but that the world is OK. In this moment, he embodies the world. Everything will be fine. He’s here. It’s perfect.

Health, Happiness, Happy Birthday James.

We Can Do Better.

Published on June 4, 2015June 4, 2015 by Mary Gelpi14 Comments

I noticed an article in The New York Times recently titled “World Health Organization Urges More Care In Naming Diseases.” In early May, the WHO issued new guidelines for naming infectious diseases in an attempt to avoid damaging inaccuracies and stigmas that often the name alone can cause. They emphasized caution and symptomatic detail when choosing one; no animal names like ‘Swine Flu’ or peoples names like ‘Lou Gerrigs Disease.’ The new guidelines are a proactive attempt to prevent “Unintended negative impacts by stigmatizing certain communities or economic sectors.” They also mentioned that “The best practices apply to new infections…for which there is no disease name in common usage.”

Of course I read the article expecting to see CFS as a prime example of how damaging the effects can be from a poorly named disease. When Myalgic Encephalomyelitis was renamed “Chronic Fatigue Syndrome” in the early 80’s, it solidified an environment of dismissiveness, doubt, and critcism. A new stage was set: everything from the publics skepticism to the medical establishments cold shoulder were put into place, and little has changed in 30 years. Now if you had the misfortune of being sick with this disease, you were going to have two battles to fight.

I don’t just hesitate to say those three words out loud, I feel anxiety about it. Sometimes in doctors offices, I feel shameful saying it out loud, as if I’m confessing to how many packs of cigarettes I actually smoke each day. When I’m forced to say it, I swear I can hear any perceived validation deflate out of the room like a popped, zigzagging balloon. The words don’t hold any water on their own; they necessitate explanation that ends up sounding like defense. The words “Chronic Fatigue Syndrome” are not only misleading and insultingly trivial, they sound like a hypochondriacs failed attempt at making “tired” sound serious. And that seems to be the general consensus–that this is a “disease” where people simply feel sleepy all the time. Sleepy is for kittens and babies, and the primary symptoms of this are far, far beyond the bone crushing fatigue we experience. But this is the problem with labels, namely inaccurate ones. There is damage in what the words imply and even more from what they fail to say.

Here’s an example. A few months ago, the Institute of Medicine released a 600 page report devoted wholly to examining and better understanding CFS/ME. The committee not only provided new diagnostics guidelines and better disease management, it acknowledged the severity of the disease and put to rest the idea that it is at all psychological. Surprising many, they acknowledged the issues stemming from the name CFS and suggested a new one: Systemic Exertional Intolerance Disease. (SEIDS) It doesn’t exactly slide off the tongue, but it does finally address a discerning symptom of ME, which is the adverse reaction, down to a cellular level, to even mild exertion. This is far different than general fatigue. An exhaustive study like this one from an Institue with no previous involvement with the disease is a huge step in the right direction. The validation it provided for many sufferers was big, and the recognition of the staggering lack of science and funds to support it will presumeably apply more pressure at the federal level for a major increase.

I happened to read about the IOM’s report and name suggestion from NPR News, which I follow on Facebook. When I saw the hundreds of comments underneath the article I decided to look, and they weren’t anything out of the ordinary. Out of hundreds of responses, most of them were like this:

Totally! It’s like I’ve never met anyone with Diabetes who can eat copious amounts of sugar. It’s obviously bullshit!

Em, you don't have this. -Mary — Em, you don’t have this.
-Mary

This person actually doesn’t believe in Carpal Tunnel so I don’t know where to go from here.

I know it’s a leap to project the reactions of a few Facebook commenters onto the general public. But in this case, these attitudes are not at all the exception. They represent a ubiquitous perspective most people have, whether online or in person. And maybe it’s redundant to say, but this is simply not a normal response to sick people. It just isn’t. It’s easy to see why sufferers hesitate to say the name out loud at all. Look at the environment we’d be entering into.

So, is this of any consequence? Does it really matter that the general public understand a disease? Not really, besides the demoralizing and crappy way it makes already sick people feel, no, it doesn’t. These people aren’t doctors, (most of them) and so who cares really? Besides basic human kindness, is this of any real concern?

The thing is, yes, I think so. Namely because this attitude pervades more than an uninformed public. This lack of concern, eye roll response travels all the way up to the federal level. Or maybe it trickles down from it. It’s hard to say anymore. Irregardless, by now the two are in some osmotic relationship– One fueling and informing the other. And when this is the attitude at a federal level, the effects are far more detrimental and consequential. $5 million allocated toward research for the last five years from the NIH is a detrimental effect. No cause, no cure, and zero FDA approved treatments are all the result of a disease not getting the attention it requires. Ironically, people who are sick with this don’t want attention at all. They just want to get better so they can have their lives back. But the shot at finding a cure relies heavily on the desire to find one and fund the science for it. When the perception of it is so casual and misinformed, it contributes to negligence– it prevents that possibility of a cure the way it has for the last quarter century.

I can’t help but wonder if the same outrage would exist from people if the disease went by its original name: Myalgic Encephalomyelitis. Would people scowl at its existence and call someone with the diagnosis a lazy-ass complainer who just needs to eat better? Would they judge them for being too sick to work? No, because those responses are not to a disease called Chronic Fatigue Syndrome. They are responses to feeling fatigued; one is fire cracker, the other is an atomic bomb. I realize all of this may seem a little petty. It’s just a name and there are bigger fish to fry when it comes to this illness. But I cannot help but wonder if what’s fueling the size of those fish is at the core, a simple misfortune of a name. It’s crazy to think that a label could do such harm or have such far reaching effects, but I don’t doubt it in this case. The evidence is right there, in this abnormal anger healthy people have against sick people as if they’ve chosen to be sick.

The point is not to harbor on issues I cannot change and I know that. Forward is the only direction now. But there’s such a lesson here in accepting things at face value and the harm it can do when we trust that we know better, before knowing much at all. It’s not just a poor social stigma we’re dealing with. It’s having a totally debilitating disease which costs the country roughly $18 billion a year in lost productivity, and the lowered chance we have at getting better because it just doesn’t appear or sound serious enough. This is where labels have much larger implications than just confrontational dialogue and ousting sick people. It’s bigger than that.

It makes me think of the way I perceive things and other people in my own life. How easily I make up my mind sometimes, one way or the other, about all kinds of things. I think of hearing or reading about issues and people and how fast and automatic a decision or feeling arises inside me. Sometimes I’m proud, thinking I know better about something, even when I hardly know that much at all. I think, if I never would have gotten sick when I was nine, were I still a healthy, functioning person 30-year-old, quick thinking and totally capable, and I heard of a “disease” called “Chronic Fatigue Syndrome,” what conclusion would my mind jump to? What feeling would I get? If all I had to go on were those three words, given that I wasn’t a doctor or otherwise well-versed in diseases, what would that label say to me? That name in its own twisted way, appears to say everything, enough for people to hold up their hands and say “I’ve heard enough, thank you.” Enough to feel decidedly one way or another without hesitation. Quick decisions and judgments like that do harm for all kinds of people with respect to all kinds of issues. I think we can learn from this one, and do better in the future across the board when it comes to making up our minds but remaining strictly at the surface.

Illness is not something to undergo alone, and anyone who has experienced it long-term will tell you that. When people email me about their families dismissing them, doctors referring them to psychiatrists, or marriages that crumble because someone is suffering from a disease with so few options and a world that just doesn’t quite “buy” it, I feel angry and discouraged. Mostly because I believe in the good-heartedness of people and I know we’re better than this. We can do better. Turning your back on someone who is sick is more than insult to injury. It causes its own tragic pain, separate and worse than the physical kind. It’s a new kind of loneliness, in a time you need people the most. After twenty years of being sick, the last five being the sickest, the hardest and most demoralizing part is battling something that so invisible to everyone else, all the while your whole world is crumbling.

The truth is even though it’s still massively lacking, there is more research than ever going on, and thanks to recent reports like the IOM’s and the Pathways to Prevention, pressure is building to invest more into solving this thing. My hope is that in the meantime people will be at least a little diligent before ousting an entire population of sick people as hacks. I hope if you’ve got major beef with the illness, you haven’t just heard the name and stopped there. To learn more about it, Cortjohnson.com is a great resource with vast information, including current and future studies and well-written dictations about their meanings. To those who are sick and discouraged, I hope you’ll read this and have faith that you’re not alone and that the answers will come. Progress is slow but it’s moving. Until then, please don’t lose hope. Worse than being sick is the thought that our life is over if we never get better. There is value to gain in all of these experiences, whether you’re sick defending yourself or dealing with someone who’s sick with something you don’t understand. But try and remember we’re all brothers and sisters here. We need each other. Maybe the history and politics of this disease hasn’t been our kindest hour, but we can still turn it around, even if it’s one less person casting judgment or turning someone away. As is the case with all social change, it always begins with one. We can all do better, and I’ve never lost hope that our future will be far brighter than our past.

Labels and categorizing are important, they exist for a reason. But in the case of CFS, and the WHO’s new guidelines for naming disease with caution, help exemplify the power and possible harm of labels. They must be chosen wisely. The CFS label was not, and it did an injustice to millions of disabled people. But it doesn’t have to stay that way. And despite how long and twisted the history is, it’s not ever too late to turn it around. Slowly but surely, I believe that change has begun and we’re on the cusp of something major. Despite my bad days, I believe in the awesomeness of humankind. We can do better. So let’s begin doing it now.

Health, Happiness, Better.

Cutest Passport Photo in the History of Time?

Published on June 28, 2013 by Mary Gelpi6 Comments

Sometimes when I’m sad or frustrated or just looking for something to make smile, I look at this picture: It’s the passport photo of my 1-year-old niece, Olive. It’s funny how just an image can cheer us up or change our energy. Any photo of my nieces tend to brighten me up, but this one in particular makes me happy. Cutest passport in the history of time? I think so. Some things are too cute, words will only spoil them. So I’ll leave this one alone.

Health, Happiness, and Indecently Cute Passport Photos