The Grays

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.
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.
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.

One more just for funsies.
One more just for funsies.

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

For Starters, Sign Here.

Boom Shock a Locka!

I invite y’all to check out this campaign, and to sign and share it if it feels right to you. 

This is a prime example of using the web as a platform for change and for being heard on a large scale. This is how the internet will contribute to the shift around this movement in so many ways. Here is where we demand accountability, where we can distinguish fact from fiction, and how we can begin to improve the poor understanding of CFS/ME with information in place of subjectivity. There is a curious amount of opinion surrounding this disease, and a major lack of knowledge. Balancing this scale is crucial if we’re to achieve the kind of large-scale transformation that were seeking. There truly has never been a more opportune time to help contribute to this kind of cause–the digital age puts the power right at our fingertips, and it’s up to us to use it.

Sometimes the universe helps align things, and I felt that way as I read this online campaign regarding The Pace Trials from 2006. I mentioned the study briefly in my letter, because this $5 million dollar study led by mental health professionals in Great Britain had a huge impact on the CFS world–unfortunately it was a negative one. The trial coordinators revealed its findings to an eager world awaiting answers, and it appeared they’d found some. Trial professionals claimed that Graded Exercise Therapy and Cognitive Behavioral Therapy had profound results on people with CFS, in fact it led to recoveries in a good portion of trial participants! The news spread quickly, and it influenced not only public opinion of the disease, but public policy regarding it. Benefits were slashed for disability after the trial when it became clear that these “sick” people didn’t have a disease so much as they were simply de-conditioned, and either simultaneously, or as a result, were also depressed. They didn’t need rest, they needed to push through and sweat it out. Either way, it worked! Great. Except that, it didn’t work. 

After third parties began to break down the details of the trial after some initial numbers didn’t add up, they found huge errors in consistency, methodology, patient feedback forms, and in sticking to scientific protocol in general. The problem is that by the time all these issues with the study came to light, that false message had already been conveyed, the damage done.  How does that phrase go? Lies will travel halfway around the world while the truth is still lacing up it shoes…

There seemed to be no official consequence for what turned out to be either massive negligence or outright wrongdoing on behalf of the study’s organisers. Worse is that the Trials are still cited as scientific proof for the idea that therapy and exercise are helpful to people with CFS, even though specialists in the field and patients attest that the opposite is true: exertion can be severely damaging to a person with this disease. It’s the modern equivalent of advising diabetics to simply eat more sugar, just a little bit at a time! Your body will slowly learn to tolerate it! The point is, this trial either directly or indirectily halted progress for CFS/ME by helping to solidify a theory that never turned out to be true. It continues to inform decision makers and is still cited as legitimate science even though it fell far short of that. The irresponsibility of the trial and its coordinators set an already struggling and sick community back, and I think we have to be proactive about preventing any further damage that could result from misinformation like this. It’s a timely matter that is up to us–the internet doesn’t favor fact over fallacy. It’s simply a medium moving all data at an insane speed; the burden is ours to discern between what is true and what falls short. We’ve got some catching up to do, but at least now there’s a way we can. 

This is personal for me of course, but it’s also about keeping public officials in line and holding them accountable for the decisions they make. I like that we have the ability to hold serious matters like this under the light, that we are able to help correct wrongdoings and achieve transparency where we didn’t always have the power to before. This petition asks to retract at least parts of this “study” from being included as legitimate research, which seems fair. Im hoping it will help leave the myths around this disease in the past and move us forward with the kind of ground-breaking science and studies needed to finally find a cure, not secure a stagnant status quo. You can read more about the trial through this petition or check out some other websites at the bottom of the page.

Sign the petition here:

http://my.meaction.net/petitions/pace-trial-needs-review-now

You don’t even have to wear pants in order to make a difference today.

yeah.
yeah.
Health, Happiness, Sign It!

TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study

PACE Trial Authors Feeling the Heat Over Chronic Fatigue Syndrome Trial

http://www.biomedcentral.com/1471-2377/7/6/COMMENTS#289542

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

I Have a Time Machine

Here’s a poem I really like. It’s by Brenda Shaughness.

I Have a Time Machine

But unfortunately it can only travel into the future
at a rate of one second per second,

which seems slow to the physicists and to the grant
committees and even to me.

But I manage to get there, time after time, to the next
moment and to the next.

Thing is, I can’t turn it off. I keep zipping ahead—
well, not zipping—And if I try

to get out of this time machine, open the latch,
I’ll fall into space, unconscious,

then desiccated! And I’m pretty sure I’m afraid of that.
So I stay inside.

There’s a window, though. It shows the past.
It’s like a television or fish tank

but it’s never live, it’s always over. The fish swim
in backward circles.

Sometimes it’s like a rearview mirror, another chance
to see what I’m leaving behind,

and sometimes like blackout, all that time
wasted sleeping.

Myself age eight, whole head burnt with embarrassment
at having lost a library book.

Myself lurking in a candled corner expecting
to be found charming.

Me holding a rose though I want to put it down
so I can smoke.

Me exploding at my mother who explodes at me
because the explosion

of some dark star all the way back struck hard
at mother’s mother’s mother.

I turn away from the window, anticipating a blow.
I thought I’d find myself

an old woman by now, travelling so light in time.
But I haven’t gotten far at all.

Strange not to be able to pick up the pace as I’d like;
the past is so horribly fast.

Pretty great no? It’s funny how some poems feel like they were written just for us, as if the author knew exactly where we’d find it and what it would do to us, hitting us in the gut in a coffee shop! Or heart. Our insides somewhere. I love this part of poetry. How fast it is. How in just a minute or two you can cosmically connect with a total stranger, dead or alive, and feel more seen or heard than you have by actual people. That’s powerful stuff!

I’ve recently been reading Anne Sexton–her history and her poems–and both are intense and curious and heartbreaking, but deeply resonant and I’m eager to read more. I plan to order someones cheap, used copy off of Amazon, and hopefully I’ll find parts that are underlined or circled with little notes in the margin. This is one of my favorite perks of reading (used) tangible books as opposed to electronic, kindle types; the human mark on the pages. They’re like little visceral clues of other life, but exceptionally personal. More confidential than say, finding someones grocery list, although there are treasures to find in that too. Maybe I am just an alien from another planet seeking signs of life and getting way too caught up in casual life leftovers. But somehow I feel less alone when I see a persons scribbles to the side of a page. Their unique handwriting next to that flat text against the page– It heightens the effects of the words. It brings the whole thing to life. It always makes me think that someone else sat alone somewhere, reading these same words and they were compelled enough to write themselves. Maybe it was there way of writing back, hoping someone somewhere along the way would read what they wrote and feel something. I don’t know, but there’s just something…nice, about that.  Anyway, I think I will start with The Awful Rowing Towards God. Or maybe Live or Die and go from there. Did you know that Anne Sexton had two sisters, and one was named Elizabeth Jane, and the other one was named Blanche Dingley? BLANCHE DINGLEY?! I wonder if Elizabeth Jane gave Dingley shit about that.

Health, Happiness, and Poetry. Pure Poetry. 

Under Water.

I need to spend more time under water.

Last Monday I returned from a trip to Miami where we celebrated a few things, including my birthday. Thirty one- the best yet! Maybe it was a birthday present from my central nervous system, but my body held up pretty well for me during my stay there. I’m also a little better at saying no to certain things when I know I’m close to crossing the invisible line. My threshold or whatever. Anyway I was able to partake in some awesome things that I dont’t always have the health for. I told my brother I wanted to snorkel for my birthday and he assured me this was not a problem.  At the beach I submerged myself in the ocean and was immediately comforted by it. Water in general has always felt healing to me, but a warm ocean in the summer is at the top of the list. We could have spent all day out there. All day and all night if my body permitted it. There is something truly holy beneath the surface. I like the muffled silence and spotting darting fish and pretty much anything that moves. We saw so many different types of fish, and every time we’d spot a school or something I didn’t recognize, I’d make my brother Nick come to the surface and tell me what kind it was. I’d repeat it out loud, then we’d go back under. I’m really terrible at remembering the names but I’m trying to learn. I’ve already forgotten so many, but I can say with certainty we saw a crap ton of huge, colorful parrot fish, some barracuda, and a bunch of Nemos and Doris. (Technical names) It was Heaven. My three-year-old niece Olive requested that we find her a starfish and we both searched diligently and came up short. But my brother did find a baby sea turtle, and that was pretty righteous.

unnamed-2 unnamed

Isn’t he so cute? Anyway we came back to shore and had lunch, but most of the time I just kept thinking about getting back into that water. It’s almost Church-like swimming around down there. Somehow in spite of the beaming life everywhere you look, theres a stillness to it. Everything slows down and feels at ease–within me, anyway. I’d like to spend more time in the ocean, specifically underwater. I do well there. I think that’s my goal for this year.

Inevitably all that activity ended me up in a week-long hibernation for the last six days. It’s pretty normal to crash after I travel anyway. And eventually all the extra “curriculars” would catch up to me physically. But I was grateful to hold up for as long as I did. It’s funny, you’re always calculating with this illness. Saying yes to one activity usually means you’ll have to say no to some other one tomorrow or the next day. You’re always “borrowing” energy: allocating it as if it were a monetary budget. Going over, or spending too much, means you’ll pay. So you’re always considering cost and reward and whether the consequence will be worth it or not. You don’t always get it right, but you get better as time goes on. In the case of swimming and snorkeling and fishing that day, totally worth it! Still, I think there is a better way to navigate this illness than living the “push-crash” lifestyle. Doing what you want for a certain amount of time, and then spending at least double that amount of time in bed in the future. Most CFS’ers live this way, not because it’s the best or right way, but because it’s A way to at least do some things and not live your life in bed. Anyway, I hope to discover a more sustainable way to go about this, but it works for now. Kinda sorta. You get me.

On another note, I keep doing this thing that I’m trying to stop. I write and write and write and then I edit and edit and edit and then the essay goes in new directions and I want to keep everything a decent length so I start over and consequently end up with 6 different half-written, diligently edited posts, none ending up on the blog. It’s a pretty stupid system and I’m going to try and stop doing things that way. Sometimes my idea about how I want things to look or turn out hinders my goal which is not just to write well, but to write consistently and allow part of what’s happening in #marys sick life to inform my stories–even if what’s happening is boring or sad or awesome or mediocre. It’s a continual lesson in letting go that I’m still trying to grasp– write things out and then let them go. Although it’s easy to mistake for editing, I think I often look through my own words trying to take on the role of reader instead of writer, and I develop this anxiety that I’m not getting through accurately or perfectly representing myself, so I hold off on publishing. But I know this is silly because all I can do is be who I am and write what I know, and if I’m judicious about that then I don’t need to worry about the rest. The truth is I am the writer after all and some of writing is trusting the reader. Showing and not telling, yada yada yada. I think my incessant “reading over” and modifying is just another way to prevent me from putting myself and my words out there on a medium where they’ll live on their own and be subject to scrutiny. Could I really be afraid of criticism after all this time writing on a blog? Probably, which is entirely embarrassing. Because who cares! But pride and vanity are some powerful little devils, and the only way to move past them is to write on despite the superficial concerns.

I’m going to try harder to work and contribute to this space and not become too serious about the whole shebang. Especially to the point where it stifles things. It’s pretty silly getting so analytical about it, because it’s really just not that important. I care deeply about it, but when I zoom out and consider everything, this is just a ledger of one persons life. And pretty unexciting life, at that. I think my concern lies in whether or not I’m contributing meaningful things that will move me and others forward or if I’m just whining on a stick. I am hoping by the end, what and whenever that is, this will all will reveal something larger and more dimensional than a woman child’s diary about sick days and her dog. But even if it is that. Who cares? I only need to focus on what’s in front of me and stop pausing to consider a future I don’t have control of.  The one thing I don’t want to do is restrain myself or my words or the creative endeavors I want to pursue all because I’m worrying what it will all “look like” in the end. Concerns like those are what kills momentum, and good ideas, before they even get a chance to materialize. My truer goal should be simply to write and to allow the words to do what they’ve always done–help me to see things that my thinking mind can’t.

So, hopefully you’ll be hearing a lot more from me and I from you. I am feeling happy to be one year older, to know myself even better having lived on earth for three hundred and sixty-five more days as ME, Mary Gelpi. I’m becoming pretty good friends with myself and we’re getting along well. We’re practically finishing each others SENTENCES. Thank you Nick for exploring the ocean with me, and tugging me back to shore when I was too tired to swim back myself. What else are big brothers for?

Health, Happiness, Thirty One.

Haikus From A Crash

Spent Saturday night
Forgetting. Acting my age.
I’m young, I can dance.

For four nights, five days,
Never left my best friends bed.
(Hospitality.)

This tin-can music
On hold with the pharmacist
Tries to get me down.

Robot voice thanks me,
Your call is importan–Click.
Avoid urge to die.

Doc: Where is the pain?
Head, Muscles, Joints, Skin. Constant.
Doc: Are you depressed?

Congratulations!
Didn’t go to med school but,
I’m my own doctor.

The universe yawns-
Striving for life I don’t have,
I’ve become Facebook.

I cried when the maid
Killed the spider in my room.
Alone, things get weird.

Can’t forget him now–
Broke up just in time to find
Ringworm on my thigh.

A measure of will:
No one needs you anymore
Do you feel alive?

Monty at my side
Asks for nothing the whole day
Meet visceral love.

Tail wags in his sleep,
Watch his belly rise and fall
Love, you make me weep.

If Haiku rules were
Seven-Five-Seven instead,
Would I still be sick?

Bzzz. Thud. Bzzz thud bzzzz
Angry bee against the door
None of us get out.

Sad signing the forms
Which say I’m incapable.
BUT IM SEXY YALL!!!

Day 6, I’m alive.
Under water asking if
Dancing was worth it.

I should know better,
But I remember dancing,
Don’t remember price.

Health, Happiness, and Haikus.

Under the Water.
Under the Water.

*Shout out to Newman for haiku inspirations and continued decency in a perverted world.* 

R and R and R

I’m writing from my iPhone, supine on the couch. It’s the first time doing this because up to now I’ve experience so much frustration typing on this keyboard that the idea of writing a whole blog post on it felt out of the question. I could just imagine the many many predictive text failures and me growing angry and tired. But, alas, I can barely move. I don’t feel strong enough to sit upright and feel comfortable. All my limbs are weighted, my head feels like a bowling ball supported by a twig.  All my appendages hang like deadweight to the floor. Mostly I feel really brittle.

I had a bunch of nerve-racking dreams last night with intermittent nightmares. I wake up with 5 or 6 vivid memories of all these scenes playing out in my mind. Many times it’s in the middle of the night and I wake up to the sound of my own voice saying “Mmmmmm” but unable to get the word out, my jaw straining and my mouth tight. This is also happening in the nightmare; I’m unable to speak, often unable to move, and I’m trying to call out. The “Mmm” sound is for Monty. He is who wakes me out of the dreams. Almost always I awaken, sweaty and afraid, and next to me is Monty, standing close to the bed panting loudly. A few times he’s pawed at the bed or whined to get me out of it. He is my relief. I pet his head and slow down my mind, my breath. He grunts and quickly goes back to sleep. I’m continually amazed by his visceral nature and intuition. He’s more than a therapy dog. He’s a rescue dog.

So many times, when I fall back to sleep, I return to the terror or anxiety or the inability to move, or be heard. Sometimes picking up right where the last dream stopped. Even when they’re not nightmares, they’re usually taxing and filled with angst. Or I’m just too sick to keep up with the characters. This morning just before my eyes opened, I was trying to keep up with my brother and sister who were packing up and moving from our house. My brother was mad that someone had dirtied the bathroom walls and I had a washcloth, sluggishly trying to wipe them down but struggling with my shaky arms. I could barely complete the task. I explained I was trying my best and to go easy on me, that I was exceptionally weak. ‘Why are you so weak?’ he asked, looking me straight in the eyes. ‘I don’t know’ I said discouraged, returning his dead pan. That was it. I opened my eyes to Monty on the bed and my whole body aching, but worse was the heaviness over me. It was so hard to move my cement limbs. It took way too much effort. As I struggled to get out of bed and merely stand up I thought “Ah, well, that explains the dream.”

In fact I think my dreams have deeper meanings than just their physical implications, mirroring my condition. But certainly my symptoms heighten the scenes and details. A while ago I dreamed that metal shards were sticking out of my kneecaps and my legs had a bunch of broken glass stuck in them. (Having glass shards in my skin is a recurring detail) When I woke all my joints were aching, most of all my knees for some reason. The rest of me had that general ache, and it was interesting how my subconscious was using those symbols to reflect my physical reality. Anyway, when I think back on them later, I think, did I get any restorative sleep? I wake up feeling like I ran a horror marathon all night! Not all nights, but most. And it’s interesting to me. Many of my days aren’t filled with a lot of action, but it’s like I have this whole other life when I go to bed at night. And sometimes it’s really amazing. This year in particular, I’ve been able to ‘decide’ to fly and I do it a lot now. It truly feels like I have actually flown, I am amazed and exhilarated in the dream, knowing it’s an incredible thing. As soon as I believe I can (like thinking a happy thought in Peter Pan)!or remember that I did it in another dream, I do it. And I experience it fully.. Looking down at roofs of houses, flying and landing onto branches of tall tress. Last night was theatrically hilarious: I flew real high up above this pool, turned upside down with my arms out like Superman and nose dived while doing full 360 spins into the pool. And I knew that I looked like those Olympic divers who land perfectly into water without hardly making a splash. I was showing off, and it felt great! This was just before I realized we had to leave and I was heavy and weak trying to get out of the pool. I didn’t seem to function on dry land. That flying part was fun though.

Unfortunately the rest of the day so far has remained in a crash state. Extremely weak and fatigued, super dizzy every time I stand up, with my hearing becoming totally muffled and my heart doing all kinds of weird things. I’m short of breath and winded even though I’ve barely moved at all. I was supposed to go to a wedding which I was looking forward to tonight, but I knew exactly what would happen if I pushed it and went, so here I lay, with Monty next to me waiting for any movement that looks at all promising .

Days like these are hard, but they used to be much harder. I’d fight them, racking my brain for a way to make it work– to keep plans, to fulfill my own or others expectations, to demand that I was in control and not my body. If I gave in and said no, I’d torture myself imagining all the fun I was missing, and grow angrier at my circumstance. I’d feel hopeless and my mind would exaggerate the ‘unfairness’ of my life with this disease. But saying yes always yielded the same bad result–a deeper crash and an extended amount of recovery time. Which would make me miss out on even more. Now I feel more in touch with my body–I usually know deep down whether or not I can or should do something, and when the answer is no, I spend as little time harping on it as I can. I’ve practiced surrendering faster and divertig my attention to what I can do while I’m in whatever state I’m in. And honestly there is plenty– the iPhone alone can busy you for hours. Yes it stings to miss out, but my wisdom in making the better decision and my acceptance with whatever that is has grown. I think with an illness like this it’s almost a lesson you’re forced to learn. The alternative is just suffering on top of suffering, and ain’t nobody got time for dat.

I’ve got two good books: A Return to Love by Marianne Williamson and Dance Dance Dance by my favorite Murakami. There is Mad Men Season 6 I haven’t seen yet. There are rain storms that continue popping up that I like to close my eyes and listen to. There is food in the fridge, (my mom texts me,) and there is the gift of time I’ve been given to rest and recover through days like this. And it wasn’t always that way. I have to reming myself what a gift that actually is.

As for the dreams, I’ll try to write them down, and since I’ve learned how to fly, perhaps I’ll learn how to shed my physical issues in that world too. Or I won’t. Either way, in this sedentary life of mine, sometimes those active dream-filled nights give me an adventure that invoke my mind and heart, and that’s pretty cool in itself. (Minus the glass shards.) Especially because I remember them so vividly. Anyway, sometimes it takes stepping back and changing the filter through which we see our experience to see all the treasures that it contains. For me that comes with writing, and having the chance to do that on a blog and being able to connect with people is one of the greatest gifts I have right now. So thank all of you for being so supportive and reaching out often. It’s been huge for me.

Now, back to nothing.

(Kiddinggg)

Health, Happiness, Recharging.

We Can Do Better.

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:

.
Thanks, Steph. I’m cured!!!!
.
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.
NOPE!
Hi Brianna, NOPE!

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.

Time To Kill

A little while ago, I was swinging on our porch swing while Monty did acrobatics with a stick and ran laps in the yard. I had been down for some time, but I couldn’t place exactly the source of the sadness. All I knew was that I could feel something missing and the result was not a loneliness but a “looked over” kind of feeling. It’s not uncommon for me to feel lost and uncertain about the direction and usefulness of my life, especially when I’m in a crash period. This feeling felt like it had roots in that. As I let my thoughts wander and my mind clear, these words entered my head and seemed to quiet the residual buzz: “I just want to make myself proud again.” It didn’t repeat itself like an incessant thought, rather the words just stood still in bold print, front and center in my mind. And then all at once I knew what that void I’d been feeling was. It wasn’t just a lack of pride, but the lack of pride and purpose that usually comes from working. Uselessness is a terrible feeling, and I know it arises sometimes from the fact that I don’t have a real job anymore. I haven’t in some time. And yet through this whole ordeal, that loss continues to cuts deep. It has me constantly wondering what I’m doing here and where I’m going and how I’m ever going to get there. As a working girl my path felt so clear-cut. I catch myself daydreaming of my desk and my business cards and the “importance” they implied.  But once the crutch of a job was gone, everything inside me felt upside down. Who am I if I don’t “do” anything?

Sitting in my bosses office and having to admit with a quivering voice that I “just physically couldn’t do it anymore” was one of the hardest moments of my life. My whole goal up until then besides getting better, was to find a way to hold onto that job. I knew if I was forced to leave it, it meant everything was irreversibly real. It meant despite what I planned or wanted, the illness was making decisions that I couldn’t change. It meant the scales had tipped and I was no longer in control. (Maybe I never actually was, but the illusion felt good) But now here I had come face to face with the truth that clinging onto the job was only causing me more suffering, besides largely effecting the quality of my work. Were I smarter I would have given in earlier and dedicated myself more seriously to getting well. But I was in a sort of denial up till then. I kept expecting to get better. I didn’t want to believe that this was truly going to be the new state my body. No one really wants to accept something like that, I think out of an inborn fear that doing so means you’re giving into something crappy and letting it take over–That you’re giving up on the possibility of getting well. But it was more just coming to terms with a reality and giving my health the attention it needed. Everyone around me seemed to know the time had come and were just waiting on me to call it, so I finally did.

I can remember solidly a few things from that conversation. I can still see his big sappy eyes as Andrew listened to me speak, and the honest calmness in his voice when he said  “It’s been hard to watch. I just can’t understand why this would happen to you.” I tried very hard not to cry but the tears fell anyway, much like they are now just remembering the whole interaction. We hugged goodbye and I tried to compose myself. I remember, I think in an attempt to lighten the sadness of that goodbye, him saying to please stay in touch and to come back and visit often. I said I would, knowing I probably wouldn’t. Knowing that life at the gallery would go on without me, while my own life was drifting into scary, uncharted waters. I punched out for the last time and felt totally numb. The French Quarter had just turned dark, freezing and damp, but I didn’t feel the cold at all. I paid the nice parking attendant with whom I normally joked around without even looking him in the eye. He made some comment about cheering up or smiling but I couldn’t bring myself to respond. I moved on autopilot like a robot. Once in the car all the terrible questions made their rounds. What would become of my life now? Who would I be now, sick and unemployed? What if I never get better? I tried to drown them out but the noise of the radio bothered me. That 40 minute drive home over the bridge felt like a dream. Once home, Monty ran up to me and my mom was sitting in her chair in the living room. Our eyes met and I lost it. “Well, I guess I don’t have a job anymore.” And that, as they say, was that.

Even though I fought it, leaving work was the right thing to do and in my condition, was just a matter of when and not if.  In the beginning it was a relief– not to have to fake well, to call in sick, to let down coworkers, and to constantly apologize. But not so long after, I began to feel this noticeable hole, like the gap your tongue slides through after you’ve lost a tooth. I had all this new time to kill but couldn’t spend it how I’d like. The adjustment was extremely difficult. Besides giving me purpose and pride, my job had contributed to my identity and livelihood. There was a little space carved out in the world called Mary, and I was useful there; I fit. I did what was expected of me and was paid every two weeks. But now I no longer occupied that space and I couldn’t make sense of what place I held in the world. Without the distraction of work, I also had to learn to just “be” and accept these new circumstances, which was also hard. When you’re sick like that you can’t just leave and go for a drive, or go get drinks with friends to feel better about it. It makes you confront your life head on since there aren’t the typical escapes. I had to begin accepting my experience and not thinking of my days sick in bed as total wastes. I’m still learning to do this, but it is possible. It began with adjusting the expectations I held for myself, and redefining what my definitions of “work” and “purpose” really meant. For so long work was something you did 40 hours a week and got paid for. And our culture nearly defines who we are by what we do. I no longer had a satisfying answer to that question. “Uh, Unpaid blogger I guess?” It took adapting to where I was at that point and not in the past. I was always going to feel shitty comparing my life sick to someone’s who was well. I had to get real about my truth. Still, those adjustments were hard and I am still learning them.

Life with illness means a lot of time on your hands and a lot of solitude. You have to learn how to be still, which I’ve learned very few people know how to do. You’re away from the typical distractions and noise and chaos often, so there is a lot of “being” and not “doing.” It also means getting to know yourself really well. Luckily, I like myself. We seem to get along. But all of this new vast time without a lot of outside expectation took a long time to really understand and warm up to at all. I had to remind myself that being sick is a part of me but not who I am. That took time too. As time went on I would grow more worried that I hadn’t re-entered the workforce. Or I’d feel these waves of inadequacy like I did recently. But sometimes I wonder if it isn’t the purpose of my soul that’s getting carried out because I have a body that doesn’t allow me to be busy and caught up in the regular tasks of life.

This experience has taught me big things and continues to now. It continues to teach me to let go of things, to be still and not be restless, to be OK being alone, and to accept myself as worthy even if I’m not doing anything impressive or achieving BIG things. Most of these were learned because my body wouldn’t let me achieve all I wanted to, and the lesson in humility has actually made me happier in some ways. All of it has made me come to terms with things that I truly find important, things outside of a job where the ultimate goal was money. If I look at this time away from work another way, it feels more like a gift. It’s allowed me to find and develop my voice for writing, which was my passion all along. It’s let me explore many other parts of myself that were not a part of my life when working. Even small things like learning to play my dads guitar and spending more time with my family that I wouldn’t have otherwise. It’s forced me to find the same joy and fulfillment from the small things that I used to require in the bigger or louder stuff. Today it was just being outside in the sun with monty and appreciating the moment.

I think it’s easy to look back on my life with a “real job” through rose-colored glasses.  I was “bringing home the bacon”and dressing in nice clothes and looked and sounded like someone who had it together. But I can still remember sitting at my desk sometimes and thinking is this it? This is what I do the next 60 years and then I retire? I’d be naive to say things were perfect and always made sense then, too. They didn’t. But it looked better on paper and gave me stuff to talk about when people asked what I was up to. Those conversations are funny now ;)  I was still wondering about my purpose and the meaning of things then too. I was still asking those same questions. The only difference is, I don’t have the disguise anymore. I am clearly not headed in any predictable direction and I truly don’t know what the plan for my life is. But, at least I’ve got some time to figure it out. All kinds of time.

Still I wonder, were I to be better tomorrow, totally healed and ready to emerge back into the quick-paced world, is that what I would do? Go back to work at some job, have office birthday parties again and two-week vacations, and then all my problems would end? I doubt it. What I mean is, I don’t think that’s what this experience is about. There is something more to it than a temporary roadblock for my life. I know it has more to give me than suffering, and my work is to try and bring light to what has felt very dark. I think by learning to navigate any experience the right way, it’s never a total loss. Sometimes it’s the very thing that propels us or makes us better. There is always more meaning and a path to discover if we stay devoted to following the thing that makes us feel alive– this usually leads to finding our purpose, our spot where we fit. I guess it’s the days when I know that who I am is bigger than the things that have happened, that I still have things to offer the world, and I accept the course of my day even in its smallness, that I make myself proud again. It’s often not in what I do anymore, but in how I receive each day and whether I live it out as a gift or not.

Even if all I do is try, that is truly enough.

Health, Happiness, #SickPride

The Cusp

You know in those movies where the main character is down and out after shit hits the fan and they’re nearing rock bottom but then comes this pivotal moment, a complete momentum change where usually an offbeat sidekick character busts out the tough love and tells them only they can change the course of their lives and no one else can do it for them? Suddenly this head-boppy motivational song chimes in and so begins the montage where down-and-out becomes up and coming and bad choices are replaced with healthy ones followed by inspiring shots of her showing kindness to strangers and looking bright and happy and you know, you know, that everything is going to work out for her. Her life trajectory rockets into the stars where her potential is limitless.  And all the shit that hit the fan has settled and disappeared. It’s all going to be OK. It’s going to be good.

I find myself on the cusp of my own Hollywood game-change montage. In the movie of Mary, it’d start with me rolling out of bed… onto the floor.Then Monty enters, pulling me by my shirt collar into the kitchen, and scoots me a plate of pills with his nose across the floor. Then begins my momentum shift song, potentially this one by The Killers

…followed by shots of me lifting three-pound weights and flexing my “muscles” in the mirror. I’m drinking green frothy stuff and throwing away prescription bottle after bottle, high-fiving doctors and crossing off lifelong goals. Suddenly I’m the one waking Monty up to play, and I’m helping sick people and giving speeches in front of the president demanding  healthcare change for the chronically ill. Then the camera slowly fades in to me typing at the computer in the hazy blue of night; a question appears across the screen: Are you sure you want to change this URL? It asks. I click YES, only to reveal my new web address word by word: Zero.Pills.A.Day.Com BABY! (Scene) For some reason this hasn’t happened yet. So weird.

OK so yes this is more Hollywood than reality and there are a lot of flaws to the fantasy, like me “exercising” for one. And vitamins curing me, for two. But the other half contains actual hopes I have for my life. There are real changes that I can feel waking from dormancy, and ambitions I know I can achieve, all that’s required is that I jump off. Dig in. But when it comes time to leap, I feel hijacked by my own dumb brain. Maybe it’s more of a lump; a dense rock in my depths that thinks of a million other things to do besides the one thing that matters. Sometimes it’s a total jerk of a rock and suggests I’m incapable or unworthy, or that someone else could do it better. And the worst part is, I listen! I think yeah, I should definitely attack my nails and cuticles until they bleed instead of trying to change my life and others for the better and for forever. Smart, real smart.

When it comes to writing, I encounter the same consensus among writers, which is painfully simple: That writing every day is obnoxiously hard and often achingly lonely, but you just make yourself do it.   The writer Anne Patchett writes in The Getaway Car that the key to completing artistic endeavors is forgiveness. Before she begins, “I grieve for my own lack of talent and intelligence. …Forgiveness is key. I can’t write the book I want to write, but I can and will write the book I am capable of writing. Again and again I will forgive myself.” I’m working to keep this in mind, since so many words and pages I write on this computer end up in the trash bin. It’s hard to know whether I have a discerning eye for quality work, or if I just don’t trust myself enough. It’s beginning to feel like the constant editing is just another guise I’ve unconsciously created to keep me from the jump. Amy Poehler advised in her recent memoir that in order to write you have to symbolically remove your brain and put it in a drawer, then listen to it throw a tantrum until it wears itself out–meanwhile you get going on the real stuff. “The doing is the thing. Talking and worrying and thinking is not the thing. Writing the book is about writing the book.” See? Basically to achieve what you want, you just have to do it. Brilliant. When I’m not in denial and I’ve let go of excuses, I am well aware that the only thing in my way, holding me back, is me; and knowing that almost paralyzes me even more. But I also know that change starts with awareness, so I think it’s time I take out a hit on myself. At least on the part that’s so lost in thought it leads to stagnancy. I can’t believe the trouble thinking causes. Has Tolle taught me NOTHING!?

So many days I have no idea what I’m doing or where I’m going or what’s going to happen to me and it results in either laughter or becoming totally overwhelmed. Where I used to fear change in life, I guess when things were stable and I was happy, I’ll sense an aching fear that things won’t change. That I’ll live and die in my parents pool house, an unpaid blogger with 37 chronic conditions. I can’t grasp where my place is among the world. Furthermore I can’t decide whether our place is made or reserved. Do we discover it or carve it out all our own? I don’t know. I only know that most days I feel far from either. Other days I feel close to a major turn-around; like something huge is about to sweep me up and change all of this for the better. But by the next morning we’re back to the ordinary. I’m taking my pills and moaning and Monty is doing his best to get me out of bed. Often my life feels like a raft drifting in the ocean in no particular direction, and the wind in all its thoughtless surprise is steering the boat, not really taking me anywhere at all.

Guess we're going South. Cool.
Guess we’re going South. Cool.

Monty and I roam around this town I’ve historically hated more like tourists than anything else. No one knows us by name, besides the pharmacist of course. We spend a lot of time at this coffee shop with the angry barista where I’m writing from now.There are girls here wearing the same uniform I wore in high school. They look so young and cute in their plaid skirts and Mary Janes. They seem happy and untainted and I like the way they burst out laughing at hardly anything. I can’t remember looking that young, a sure sign I’m getting older. Since turning 30 last year, I wonder a lot whether I’m really growing up or just getting older every year. I am surprised to have found the first grey hairs on Monty’s snout this year and I feel like a mother watching her kid go to the prom.Where did the time go?! There’s all kinds of proof that time has moved forward and carried me with it.  And yet my life could easily fit the bill of a 17-year-old in many ways. Some days that’s exactly how it feels. As my friends are advancing their careers and getting married and having babies, I still bring my mom to doctors appointments and often shop at American Eagle.

I understand the circumstances of my life are different and I have to make peace with that every day. But I also want to make sure I’m growing through all of this and not just surviving it. I guess I thought there would be a day when I reached adulthood, as though it were some test you passed, like the BAR, and then were a certifiable adult. I definitely figured as a child that by age 30 I’d have it all figured it out. Of course, I was young and blissfully stupid then. I couldn’t know how obscenely larger and deeper reality would become. I feel like I know less than ever before. Every answer springs up ten more questions. I’m uncertain of mostly everything except for the aggressive love I have for my dog. In short I have no idea if I’m getting it right. And I can’t imagine the day when I’ll feel like an adult.

V413782_RC093
Didn’t You Hear?!

However, I did notice something of note at Victoria’s Secret last week. It was a routine underwear buying trip and my spirits were high because there’s something weirdly exciting about getting new underwear. There I was at the 5 for $25 wrack; my go-to section for cute and economical briefs. But I found myself all disgruntled making frowney faces as I browsed the huge selection. They were all Lisa Frank colors or animal prints. But worse, there was writing across the butt. Things like “No Peaking” and “Shopping Burns Calories!” adorned their backsides. Dear. God. The colors were blinding and I felt out of my element. I then spotted the sophisticated 3 for $33 wrack out of the corner of my eye, where the colors are muted bronzy tones and the designs are laced in floral maturity. More expensive yes, but, as I held a silky pair in my hands, modest, pretty and free of TEXT on the ass, I felt at home. This is where I need to be. I bought my favorites and left smiling. So that counts for something. I think.

Forward!
Forward!

All these thoughts weigh heavy in my mind; stupidly, uselessly. But they can be thick and hard to control. So I take Monty to the river, where he is immediately in his element and I can catch my breath. Monty finds the largest stick in the vicinity and makes me throw it in the water again and again and again. His enthusiasm is contagious and I laugh out loud watching him put his whole head underwater to find the waterlogged sticks. Something about returning to the spot and seeing the river flow in the same direction it did last time we were here quiets my head. Watching Monty run full speed and splash clumsily reminds me to chill out. That life is supposed to be fun, and it only moves in one direction.( See above) Collapsing under the weight of those thoughts makes me feel dragged by the current instead of floating downstream. I don’t know exactly who I am, and maybe it’s something that grows and changes until the day you die. I only know that life and happiness aren’t somewhere over there, and I need to stop assigning them to a future I can’t know. Times will be hard and times will be easy, but there is peace to be found in all of it if I can just trust myself and forgive the experience. More than that there are dreams to be made! I just need to move out of my own way so I can finally jump off. Over the cliff–that’s where the magic happens. That’s where the Hollywood montage begins.

Health, Happiness, the Edge.

Homeopathic Migraine Fix

When you don’t have your medicine, or your medicine isn’t working, and you’re caught in the throes of the diabolical, all-encompassing shitstorm known as a migraine, this could help save you from the depths. It has relieved my mom (fellow migraine sufferer) and I on many occasions. This was a trick she learned from a neurologist in the 80’s when she first became ill and suffered lights-out migraines, for which there were no prescription migraine drugs at the time. (I cringe) Sometimes she would have to endure the pain for days at a time in a dark room or end up in the ER when it could not be controlled. It was a rocky road no doubt, but this trick she learned helped rescue her from some bad ones, and when she shared it with me I was surprised to find it alleviated my terriblest horribliest vomitiest of migraines. And it’s pretty easy to do. I just figured I would share it with yall and if it helps even one person out of the fiery pits of migraine Hell, well then, we’re all winners really.

Here's what a bathtub looks like, in case you're too sick to remember.
Here’s what a bathtub looks like, in case you’re too sick to remember.

1. Get in a hot bath. The hot water helps draw the blood down and away from your head. If you can’t get in a bath, try using a heat pack around your feet or soaking them in hot water, but I find baths best. Try to sit upright even though all you wanna do is lay down and die. I get it, but sitting up will redirect the blood flow faster. And when you’re under attack, speed counts.

2. Wrap an ice pack around your neck. If you don’t have one, use whatever you can find in your freezer– frozen peas or strawberries or deer meat from your uncles hunt last year. All is fair in love and migraines. Wrap the ice in whatever form around your neck at the base of your head. The ice helps restrict the blood flow to the head, which is where your blood vessels are spasming, and redirect it downward. Think South. You want to send everything South.

3. Drink hot black coffee. Not some frappuchino crap either. You don’t want the sugar. If you can’t do coffee, I imagine a strong black or green tea could offer the same result, but I have only ever used coffee, so I can’t really endorse that one. If you’re like me you get crazy nauseous and often vomit during a migraine, so eating or drinking anything is the last thing you want to do. But just start with one sip. This is your way out. Keep taking small sips, and soon you’ll feel the first tinge of relief and find your stomach has begun to settle. I am unsure what mechanism exactly is responsible for this relief, but it’s there. Perhaps it’s stimulation of digestion plays a part–not sure. But more importantly, it’s a major help in quelling those haywire blood vessels in your brain-effectively serving the purpose of an OTC or RX migraine drug.

Caffeine works in an interesting way. There is a molecule called adenosine that is responsible for dilating the blood vessels in the brain. Caffeine mimics this molecule and competes with it at the receptor site. Once displacing the adenosine, it gets in like a ninja and constricts the dilating blood vessels– the ones causing that UnGodly pain that no one should feel. But we do. Welcome to life homies! Not to mention, caffeine has long been used in conjuncture with pain medicines as it aids in their absorption, particularly acetametaphine. So in the least, it can give some your pain relievers a boost if you take them. There. Now you’re cured.

It’s all about the power of three here; one alone won’t cut it. The triple threat is your best bet. I am of course not a doctor clearly, and everyone is different; it may not work for all. And obviously miracle drugs like Maxalt  and the like are more convenient and don’t require a bathtub. But when you’re desperate for relief, try this. In my experience the the proof is in the pudding. It has without a doubt saved me from immense suffering on a few occasions and my mom on many more, even when the strongest meds have failed.

The sooner you react to one the better, so act quick. Get naked, get ice, drink coffee. And once you’re able, drink a lot of fluid. Dehydration is found to play a big role in migraines, so replenish your electrolytes and restore your fluids asap. Especially because you probably puked them all up. On that note…

Good Night and Good Luck,

Mary

Thanks mom!

Living Masters

Finally, yesterday, the teeniest tiniest flicker of relief. I felt it. Though incrementally small, it was the spark suggestive of an end, or at least of an improvement. It’s been a very sick few days. But yesterdays glimmer of improvement brought me to the surface where I could breath again. It wasn’t major, but it was enough. Today, another slight improvement. I actually left the house and went to the pharmacy. That’s what we call progress people.

I don’t know what exactly caused this crash. The travel, new Miami germs my body couldn’t handle, the woman with the wet cough on the plane? Who knows. It doesn’t really matter I guess. I could feel something in the works throughout the trip. I felt rough most of the time, but, I still enjoyed my stay. Miami is nice and my family rocks. My brother Nick is another mentor of mine and always encourages my creative endeavors. He’s someone who materializes ideas instead of just writing them in a notebook, which is what I do. I envy his work ethic and it was nice to be around artists at work. I worked through some writing problems and we’ve begun a side project which I think will be great. It was nice. Look, I even caught a fish.

40 pounder
Unfortunately I think my brother later used this fish as bait.

Huge right? Of course I sort of declined at the end of that day and into the last few days, until I returned home Thursday. By that night I crawled into bed and as I pulled up the covers, the invisible monster went to work. I could feel it creeping over me, up through my limbs and under my fingernails. When I woke Friday morning it had swallowed me whole. I was submerged. The next three days were spent in bed in a dream state with intermittent stints of wakefulness. I’d awake for brief periods, feed Monty, feed myself, then dissolve into dream world again. Unfortunately I could feel the pain on both sides. In my dreams I’m looking for pills and can’t find them. Or I can’t get their lid open. That happens in real life too.

It can be disorienting when you spend more of your time in dreams than awake. Every time I awoke I  had to readjust to the surroundings, remind myself where I was. Everything was hazy and I felt weak and sedated. My body was out of juice; every move I made felt enormous and taxing. It’s a strange condition to be in, but that’s how it goes in a crash. All you can do is rest and wait for your body to come back. Luckily, Monty barely left my side the whole time. Each time my eyes blinked open, I’d spot him sleeping in some ridiculous position. As soon as I stir he’s on all fours, ready to go. I hate not being able to play with him more, but he sticks by. Sleeps when I sleep, eats when I eat. His loyalty astounds me, especially when I’m sick. On Saturday night I had a nightmare that I couldn’t wake out of. When I finally came to, Monty was on his feet, panting next to the bed. I could tell he’d done something, made some noise maybe that woke me up, though I don’t know what. He is my hero. For reals.

By Sunday I was overwhelmed. Everything hurt, every movement was laborious, and any sound above a medium hum felt like a knife through my ear. Just taking a deep breath was hard. Tears poured down my face and I couldn’t say why exactly, except that my thoughts were racing and I felt like I was sinking. My emotions often get erratic during a crash for some reason. I think parts of my brain get overwhelmed. It felt like synapses were firing at rapid rates but were incomplete. Thoughts would come fast but unfinished. I could barely talk straight. I didn’t know what I needed, but I needed help. Enter my mom.

Through the tears I tell her I think I need to eat. OK, she says, and just her voice begins to calm everything down. One thing at a time, she says. Start with the apple. I try to let go and redirect my focus on what’s in front of me: an apple on a plate with almond butter. All I have to do is eat it. I can do that. Cool. The tears come and go. I tell her I’m afraid and my health feels out of control. She listens and validates my discouragement, but doesn’t let me wallow too long into despair. Ever so gently she leads me out of the dark of my own mind and encourages me to keep going. I find myself clinging to those words, scribbling them on paper and my dry erase board. So I try, even though my insides are yelling Stop. Press restart. We’ve got a faulty body here. I sleep at their house on the couch because I’m too exhausted to walk back to mine. I’m thirty years old and my mom ‘tucked me in.’ It’s official: I’m growing up in reverse. Monty sleeps on the love seat next to me. The next day is still sick, but somehow better. I don’t feel buried by it now. My mom has worked her magic again.

The illness continues to teach me humility and gratitude. To find grace through the crappiest of times. It’s still difficult to admit when I need help, but I do. And I’m lucky to have people who provide it. My step-dad bought me groceries, and threw the stick for Monty when I wasn’t able to. I get emails from people who are sick with this and other chronic illnesses but their families don’t believe them or don’t understand, and they’re left to fight it on their own. Reading it is heartbreaking. I don’t know how anyone could survive this illness alone. Some of them say the blog has helped their families understand what they’re going through, and I always told myself if this even helped one person, it was worth the work. I hope I can do more. I wish I could make them know they’re not alone, or crazy, or inferior; all things you feel when you’re sick this way. I know we’re strangers, but we’re human beings and sharing something similar, so if you’re reading this, you’re not alone brother! But sometimes it feels that way and life gets heavy. I get it.

I am trying to be careful about my writing. I always hesitate when sharing an account like this because I don’t want to get stuck in a narrative of how hard life is without going further. Life is hard, but people don’t need that reminder. Life is harder when you stop at the pain. I try to look at the pain as the beginning of something better, not an end. Because life is also amazing, even in times of turmoil, but you have to dig deep, past the muck. It’s so basic, so cliché, but I have to examine both sides or I’ll turn into a blogging version of that Kathy cartoon. Oh God, the horror. It’s a fragile dichotomy, writing this blog. Half of me is sharing what feels like death, but the other half is screaming I’m OK! Everything is fine! Because I am OK. I’m here in my favorite V-neck shirt writing at my desk. But the schism is there and I have to be conscious of both sides. Writing isn’t a way out of it, it’s just a better way through it, if I do it right. I write better when I get creative with my circumstances, until I eventually outgrow them. Otherwise the conditions take over and despair takes the wheel. And that’s a lot of what this whole project is about; becoming more than a person to whom things happen. The poet/writer Paulo Coelho wrote this in The Alchemist,

We warriors of light must be prepared to have patience in difficult times and to know the Universe is conspiring in our favor, even though we may not understand how.” 

I love this idea and believe it wholly. A lot of things are at work that we don’t always have access to. It’s just easy to forget when shit hits the fan. Well here’s our reminder. 

In other news, it finally happened: I dropped my phone in the pool. Idiot! I watched it fall in slow motion, with that split second of heat on your neck where you think you can reverse time and take it back, but you blink and there it is; Submerged. It’s now drying out in a ziplock bag with rice, so I’m off the grid! I’ll try to use the 48 hours wisely. I’ll keep resting and reading and writing. And hopefully by Christmas I’ll be better and I’ll have found the answer to life. Seems doable.

Anyway, this post is for my mom, who dug me out of the depths once again. She is my mentor and not only guides me out of the darkness but nudges me to be better, to grow stronger from struggle and not be defeated by it. It’s true, if I weren’t sick we wouldn’t be living so close, and I would’ve missed out on a lot of important wisdom that I’ll keep forever. All for free! Thank you for carrying me when I need it but also challenging me to become more than what’s happened. You’re a master and it’s made all the difference.

Health, Happiness, Masters

How To Come Home

I’ve just made it home. My suitcase is still lying in the center of the kitchen floor.

It’s crazy how good home feels after you’ve been away from it, even when you’ve completely enjoyed your time away. Somewhere between waiting in line barefoot among rookie fliers who somehow forgot about the jug of water in their carry-on and the captain shouting God knows what into that fuzzy speaker, I start to feel my humanity slip like some kind of sock with lazy elastic hovering at the ankle.

Once upon a time, flying made me feel like a celebrity. The whole experience was a novelty and a privilege.  And somewhere in my jaded depths I know that it still is. The mere idea of humans taking flight on a bus in mid-air is still mesmerizing and I’m lucky to have access to it. And yet somehow,  the only celebrity I ever feel like is Ben Stiller in Meet the Parents. I’m all eye rolls and discouraged sighs, which sometimes emerge as a laugh–the kind of laugh you let out when nothing is actually funny. I try to keep my moans of discontent in, even when the automatic toilet flushes while I’m still on it and I’m sprinkled with fresh public toilet water. I try to breathe through the frustration of then not getting that same toilet to flush when I actually want it to and there I am dancing like some kind of monkey on fire trying to activate the motion detector that says just wave your hand to activate. It lies. I exit, I don’t care. I hate the toilet now. All I want to do is wash the Ebola off my hands and possible STD’s off my thighs, but the faucet requires the motion. And the soap requires a motion. And the dryer requires a motion. And what happened to handles? If I went on Shark Tank I’d reintroduce handles to public bathrooms. Anyway there is more dancing. More erratic behavior from inanimate objects. More laughing when it’s not funny. It’s like the DMV in there; the threat level of a Stage 5 freakout is just one toilet flush away in any given stall. You can sense it.

But not everyone confronts the airport bathroom circus. The old lady next to me doesn’t seem to have problems with her soap. I bet she’s been spared from the toilet water too. What is your secret, old white lady in the brown velour pant suit? What am I doing wrong? But there’s no time for philosophizing, I have to get to my gate. Guess where my gate is? Guess if it’s nearby or at the very far edge of the airport as in it has a separate zip code and everything. Guess.

Is it the tragedy that is modern American air travel that makes home feel this good? Maybe. Probably. I guess this account of flying would suggest I’m a young, old curmudgeon who has lost sight to how lucky I am.  But it’s always temporary. I am either going somewhere great or coming home to relief and love, and it’s just the in-between antics that can get a girl down. Once home nobody shouts the temperature and the toilets flush WHEN YOU WANT THEM TO. Of course, an 80 pound furry beast running around you in circles then through your legs and back, shoving every toy in the box in your lap and wagging his tail with enough vigor to knock over small children and feeble adults, well, that helps too. That’s the best.

I celebrated Thanksgiving with my best friend big brother Nick and Company in Miami for a week. Mostly I felt like death, but I was excited to go and the change in scenery did me good. It’s been a rocky few months. My health declined from mediocre to poor without discernible reason, and that’s just the name of the game with illness like this. I can’t pretend I’m not discouraged by it or tired of feeling really shitty when I didn’t overdo it or change anything, as if a person deserves bad health anyway, but I’m trying not to wallow in it either. I saw the specialist in Miami and there are a few changes we are making, but we won’t know more until the results arrive from the copious amount of blood I gave to test. Aside from that, my progressive boyfriend and I broke up. Ew, breakups.

It’s interesting that a decision you’re sure of it’s the right one to make can be just as painful as the wrong ones you’ve made when you didn’t know any better. And by interesting I mean shitty. We did the adult thing and “called it” at the appropriate time. We saved ourselves the tragedy of letting it slowly burn and die until it ended in hatred. I guess ultimately, even an amicable breakup is still a breakup. It’s an end. You grieve for them and you grieve for who you were with them. I experienced a whole new pain this time around that stemmed from not being my whole self in the endeavor. I pretended and concealed when the truth was ugly or getting a less than desirable response. I don’t think Id ever done that In a relationship before, but I’ve never been under the circumstances I am now and had to introduce someone knew to a world that took so much explaining, and defending in some cases.

It’s weird, I actually wanted to keep my illness out of the whole thing. (I wanted to live in Neverland, is how that sentence should read.) I had this fear it would interfere with things before they ever had a shot to develop. I feared it would be difficult and unbecoming; It would suggest I was someone inferior. I was even afraid it might be the demise of the relationship. And then, it kind of was. The weight of it became too heavy, it’s unrelenting nature became too repetitive and it’s lack of a solution wore out the seams and we broke. There were other reasons, of course. But my being sick was up there, it messed with things, it was a big a part of the end. And for a while that was a really crushing thought. It made me feel small, made my life feel lesser. I push and work to live my life in spite of this invisible force trying to take it away, and yet sometimes, it still comes out on top. It wins.

But hiding it was like doing a monkey dance in a cramped bathroom stall. (Kind of) It was stupid on top of exhausting, and I don’t know how I expected anything authentically good to emerge when I wasn’t being true to myself. I am not my illness, I know that. But it’s there, it’s changed virtually everything in my life the last four years, and nothing good has ever come from denying or dismissing it; from pretending it’s not there. And yet, sometimes I can sense that people want me to pretend it’s not there. They want to hear that I’m better, and no one understands that fantasy more than me. But pretending makes me feel like I have to hide a part of my life that I can’t control, and that’s not a healthy place to be. I don’t want long conversations about my illness. Ive had enough of them for 20 lifetimes. But I do need an honest atmosphere that doesn’t require apology. I need to be able to be sick when I’m sick and well when I’m well and not judged inbetween. It will always take patience, compassion and effort in order for my life to be understood and loved from the outside. It will always be hard in my relationships. But hopefully if I am really seen, my external circumstances won’t take up so much space. And that was half the problem, I never really felt seen. Instead I felt sorry, and that’s because I betrayed myself. By not putting it all out there, I made it nearly impossible for my life to make sense.  I am not jobless and living in my parents pool house writing on a blog called Twenty Five Pills a Day because of lifestyle choices. And that’s an attitude I confront a lot. I’ll work like hell my whole life to turn lemons into lemonade, but I didn’t pick the lemons, so I don’t think I need to apologize for that anymore. The weird thing is that in glossing over and skirting around this small part of me, so much more of who I am was stifled. Good parts! Fun parts! It doesn’t feel good not to bring your whole self to a party. In fact, that hurt the worst, and I did it to myself. I had a need that wasn’t getting met, and instead of accepting that once I knew it was true, I tried to do away with the need. Surprise surprise, that didn’t work. It’s OK to have needs. Love enjoys needs.

Now I am Stella getting my groove back. I see my health in the distance: a ship in flames slowly sinking into the ocean. Haha. That image makes me laugh. But this will pass. I’ll get better. Or I’ll get worse, then I’ll get better. It doesn’t matter, because I’m going to keep trying. I’ll attempt to transform all of this– pain, pleasure, toilet water– into something useful. Something fun. Because despair is boring and I’m seeking a creative life. The world doesn’t need more sad stories so I will find the good ones. I’ll trust what I’ve been given and let it fuel all my endeavors. Mostly I’ll breathe easier because I am who I am and I’ve made it home. I’m back. And I have so much to do.

Stay tuned.

Health, Happiness, Home.

Girls in the Fall

Something happens to girls in the Fall.

It begins faintly around mid-August, once the novelty of summer has rusted to near hatred, and the first few harbingers of Fall reveal themselves, however slight, that our frenzied wait begins. We Southern girls must wait the longest. Not until the rest of the country has surpassed Autumn fully en route to Winter will our Fall truly begin. But wait we will, masterfully preparing (boot shopping) for those dropping temperatures, sometimes near the fifties!

Is it the wait that induces our frenzy? Our DNA? Some primordial leftovers from crafting our loincloths into something warmer, adding fur both protectively and just maybe, because it looked cute on our cave husbands? I don’t know. But no doubt, when those pre-season football whistles begin to blow and that JCREW catalog arrives with its Fall Preview showcasing wispy stick women coddled in cardigans among orangish woodsy backgrounds, it’s over. Fuhgetaboutit.

Like this.
Like, what is even happening here? I like it.

 

Do I want pumpkin shit in my coffee? No. Not even a little. But I don’t mind the deluge of pumpkin flavoring making its way into thousands of consumeable items, because its meaning surpasses flavor. In the Fall Fantasy, it means sweaters and scarves. Do you know the seratonin-dopamine discotque that breaks out in my brain when I hear the words Sweater Weather!? Do you know how exciting those infinity scarves are? Do I wear infinity scarves? Nooo, and yet somehow that didn’t stop me from browsing about 1,400 of them online, salivating at their patterns and the thought that some girl out there will be wearing them and she will look fantastiko, DID IT? How could I be psyched for strangers wearing an accessory I don’t? Um, I dunno. It’s what I mean about girls in the Fall. It goes on..

It means FOOTBALL and something to “do” on Sundays, in your pajamas if you want! It means Red Beans and Rice and soup and STEW. Group text shit-talking and creative/perverted Fantasy Football names. It means PLAID SHIRTS PEOPLE. It means wedding season and chic Fall dresses. It means campfires and that smell on your clothes. Pea-coats and tea and brisk walks in the park. It means your boyfriend looking cute in a grey hoodie sweatshirt. And kissing in the cold, and how for some reason it’s different–warmer, better.

Of course it conjures up the Holidays too, which is another fever all on its own, with very similar symptoms. Just the idea gets my Fall heart pumping! I can smell the live Christmas tree now. There’s no thought of Holiday realities that include the misery of modern American Air Travel and family freakouts or that time I got too drunk during Scattergories and dropped those F bombs in front of concerned adults. These fluttery dreams, even if they are illusions, are at least half the fun. They don’t include conflicts or drunken meltdowns. They do include fancy Holiday parties (never go to any) and sparkly dresses to wear and kissing your love under mistle toe! Have I done these things? No! Does that matter? No! It matters that I could, and the Gap commercials always make it seem highly likely. I even look forward to Holiday commercials! Jeez mahn.

But what I’m truly getting at here is something that invades and consumes the female brain. I may be entering sexist territory here, but I confront it every year–Among friends, on TV, at strangers in the store, at groups of girls at Football games, and within myself. It’s a necessity. (Wait no it isn’t) It’s an industry. It’s huge. It’s had us salivating for months, on the constant lookout, thinking strategically about our approach. There’s a method to it. It’s what the season is all about. It’s what makes the world round.

It’s fucking boots yall.

This all comes down to boots. We’re surrounded and tempted by images and advertisements and boutique windows whispering to us Boots. There’s boots in here. Step inside and be somebody in boots. And there’s so many options. So many ways to go. An obviously unnecessary amount of ways to go. But the boot phenomena is not about need. We’re deep in the Fall Fairy Tale now. Here is our Knight in Shining Armor. Only he’s wearing sassy new BEWTS. This is what made the intolerable heat worth it. Our rescue. Our romance. Our savior. It’s boots. Of every color and every kind.

grey-et-al-is-wishing-for-fall-boots
Boots!

You need a casual brown or beige boot as the versatile go-to. You need rubber snow or rain boots. You need a dressier, heeled black boot. You might throw in a casual flat black as well, depending on your chosen purse color for a while. You’ll need a lace up black one for the edgy but casual Fall outfit. And you’ll definitely require a few different “booties” for various outfits. A heeled black suede or velvet. (Can be worn with pants or a Fall romper or skirt for a night out) (I don’t go out) A neutral flat ankle boot, to wear with a rolled up skinny pant or casual floral daywear dresses. There’s the classic riding boot to go with skinnies and the aforementioned plaid shirt. Or leggings and an oversized Grandfather sweater. You could do the over-the-knee boot too, to fierce up your look, dressy or casual. You may throw in a grey ankle boot, to be worn with an array of colors and can transition between black and brown. THERE’S JUST SO MANY. And we love them all.

It weirds me out and embarrasses me how exciting boots can be and a part of me

Oh God.
Oh God.

Sorry what? I got distracted by this pretty platter of ankle boots. Anyway it just sort of disturbs me how

Give it to me baby
Give it to me baby

What? God, see? This is what I mean..I just got lost looking at this melange of boots and what wearing a few of them will say about me, and whether I’m comfortable with that message should I wear them. Anyway look, I feel a little ashamed right now that I’ve even devoted writing this long with a buildup that landed on boots. There are realer things to talk about. Like things that matter. And I intend to get there. But I couldn’t be helped. This fever set it me a while ago and I’ve been playing it cool, but my eyes were cast on Fall months ago and I could no longer hide all the feelings it conjured up and my weird excitement for plaid. And cardigans. And kissing in cold weather. And BEWTS. Duh.

There’s this part of Fall which mimics the thrill of Christmas. It’s the anticipation. It’s imagining all the fun you’ll have. All the parties you’ll go to. And how great you’ll look doing it. IN YOUR BOOTS OF COURSE. I have no idea if any of this happens in the male brain. Doubtful. Anyway, Is all this a little narcissistic with inflated versions of self and broaching on being so vain you probably think this blog is about you? Yeah, it is. But I think it’s OK to venture into a Fairy Tale a while. But truth be told, Fall is beautiful and I find romance in so many parts of it. And in Louisiana we really do await its arrival a long time. I can’t even be sure it’s here yet exactly. But I can tell you it’s 90 degrees outside today and the humidity is low, and I’m about to play with Monty outside. But first I’ll change into a plaid shirt I bought months ago and some boots that make me happy. Because it’s Fall yall! It’s close enough. It’s nearly Christmas morning.

Heath, Happiness, Fall. Boots.

 

 

Can’t Touch That

I write this from the floor. My knees are scrunched up in front of me and my caps serve as wrist stands. I’d write at my desk–it’s literally called a writing desk–but I can’t sit there long before my neck goes out which causes a headache which causes a sad face. Like this :( That’s exactly how I look when I’m feeling bad, if you were wondering.

Today I woke up feeling rough. Rougher than usual. Still, this is nothing new, and I’ve learned how to let go of plans and make myself useful in other ways from bed. But I was impatient today. I had things on the to-do list that I wanted to tackle and I couldn’t. I confront this a lot, but today it made me mad.

I’ve been trying to make some changes in my life: health-wise and beyond. I’ve been proactive about eating better and since some recent lab work detected gluten anti-bodies in my gut, I’ve cut that out. I don’t miss it that much, in fact it’s high time to go without it. Gluten free is so trendy right now! It’s just that I’ve never liked when people are picky at restaurants. And now I’m that girl, ordering the burger without the bun and asking the ingredients of sauces. Oh well.

Besides the diet, which I’m still configuring, I’ve begun organizing closets and getting rid of excess anything and attempting to follow some type of schedule. There’s catharsis in things like this, but they can prove to be difficult and today is the perfect example of why.

Yesterday I cleaned out this closet in the living room, which has somehow collected my nieces baby clothes, my ex-boyfriends computer, a guitar with a missing string, and THREE brooms among other miscellaneous clutter. Throwing junk away can be a holy experience, and I was beaming throwing excesses out. After that I went to the bookstore to check out a few recommendations from a friend. I found them and then walked around a while. I like the atmosphere there and the quiet way people speak. Then I went to the grocery store for a few things that turned out to be a lot of things. My legs were burning by the time I got home and I knew I’d probably overdone it. (Wuss) But I was in my Martha Stewart zone, or something. When I began to put away groceries I noticed that the fridge could use some cleaning. I took everything out, pitched half of it, washed the drawers in the hot soapy water, wiped everything down well, then stocked it. Admittedly I sat there and opened and closed the door a few times just to relive the magic of my newly pristine fridge. I was done around 10:30.

The truth is I didn’t do that much. And that’s the ticket! You don’t have to do that much in order to feel this bad the next morning. It feels like you ran a marathon on a whim and at the end a bunch of people gathered around and kicked you for no reason. Dicks. When I sat down I realized my whole body hurt and my mild migraine I had all day had turned into a full-blown one. I took some of my 25 pills, then my nighttime pills, read a little and went to sleep. I slept pretty rough, but nothing too out of the ordinary.

When I awoke the next morning to the pool guy knocking on the glass door I felt the way Gary Busey looks.

Good Morning!
Good Morning!

I could barely get my eyes to open fully by the time I got to the door. I’m sure I looked like a zombie in pink pajamas. Anyway, all the “overdid it” symptoms were back. Achy, dizzy, heavy and the worst of them all: weakness. Because there’s nothing to do for that except wait it out. And that’s especially hard to do when looking at the list I’d optimistically made yesterday of all these tasks that needed crossing off. I really wanted to clean out my clothing closet, and sort through medical bills. You know, fun stuff! They would have to wait.

The thing is, it’s OK. This is how the illness works and I overdid it, just as I’ve done hundreds of times before. I’ve learned plenty of ways to make the day count from the couch. I’ll rest and improve over the next few days and remember that compared to the past, this is truly small potatoes. I don’t write the details of my day to whine or seek pity, but to show what a huge disruption the illness can be. It feels like I am always playing catch up with the rest of the world, and this is probably why. I just tried to plan two days and it went off track. There is such a huge variable to consider and it’s often anyones guess, so sticking to things is a guessing game. Beyond that, I write because I’m still trying to figure out how to do this. How to have a fulfilling life, one that I am proud of, without upsetting the sleeping sick dragon inside me. It feels like a continual conundrum, and maybe it always will be.

Life keeps changing and I constantly have to re-mold how to live it. I am in a new relationship which is great. But it’s also a new challenge. Introducing him into my weird sick life has been difficult on both ends. The illness is confusing, my life lacks structure and the circumstances just aren’t normal. I forget that my life requires explanation, even defense sometimes. In the beginning, I loved the escape I felt meeting someone new who didn’t know me as a sick person. It’s like visiting a place you’ve never been before and feeling like you can be anyone because no one knows your past. I thought we could keep going without having to confront it seriously. That was stupid. But it felt good to me, good I hadn’t felt in a while, and I went with it. Obviously that approach dissolved and at some point we both had to face the music.

I don’t always consider that to outsiders, my life isn’t normal. I forget that most people aren’t sick. They don’t have to take a bunch of pills in order for their bodies to do what they’re supposed to. They can go to work, attend social outings, fall asleep on their own at night, and wake up and do it again. Something I did once but now I am in awe of. I forget that being sick effects other people, not just me. I realized that being continuously ill and taking pills all the time can make other people uncomfortable. But the truth is it does, and that’s OK too.

I think the hard part for partners of sick people is that they feel helpless. They are constantly reminded that we’re sick, but there’s not a lot they can do, or say, that will make it better. And that can wear on a person, as much as it wears on us to be sick. In my case, the healing doesn’t come from words. Nothing they can say will fix it. It’s more a matter of being there– sometimes a hug, holding my hand, or just laying together, feeling the warmth of someone else’s humanness, and yelling LIFE IS HARD BUT IT’S OK! Figuring it out and adapting to what life with chronic illness means isn’t very easy, but it continues to provide me a lesson in surrender, for those around me, too. Sitting with the pain and accepting circumstance and just allowing the moment.

I think the thing to remember is that even though illness interrupts plans and SQUASHES OUR FUN SOMETIMES, it really can’t take away the ethereal, elusive thing that makes each of us specifically human. We are still who we are underneath all that moaning (I find I sigh a lot) and illness can’t touch that. In fact I think if we try really hard and lean in deep to our experience, we’ll find it can make us an even better version of ourselves. I forget it sometimes during dark days, but somewhere in my depths I know it to be true.

Health, Happiness, and Ultra Clean Closets

10 Things Easier Done Than Filling A Legal Prescription In America

1. Buying Illegal Prescriptions/Drugs In America.

2. Teaching a Wild Bear to Play the Trumpet.

Yeah, You Read That Right
Yeah, You Read That Right

3. Buying a Gun

Guns: Much Safer Than Meds For Sick People.
Because Guns Are Safer Than Meds For the Sick. Duh!

4. Going an Entire Day Without iTunes Asking If You’d Like to Install the Latest Update.

5. Getting Your License Renewed Anything Achieved at the DMV.

6. Surviving a Breakup.

.
Half true.

7. Sitting Through the Entire Hour of “Marketplace” on NPR.

8. Teaching Your Grandma How to Use Twitter.

aada3f4af06b6ab5854f5c209f1b2b9dacec19f9a8a5f119fe7be78839b902da
Preach it, Granny

9. Admitting You’re Wrong in the Middle of an Argument.

10. Playing Golf On the Moon

moon-300x223
This Didn’t Even Require a Prior Authorization!

Health, Happiness, and A Million Miles of Pharmaceutical Red Tape

Lemonade.

Someone asked me recently what would happen to this blog if I were to get well, given that I primarily write through the lens of life with chronic illness. I remember immediately thinking Dude, what an awesome problem that would be. Were this tiny corner of the internet a documentation of my weird sick life that ended on a high note with my full recovery, it’d be a major celebration. I’d have no problem changing the URL to Zero Pills A Day and then pursuing other writing projects. Or I’d keep writing here, through a healthier lens. But the truth is, while it may not always appear that way, I am still sick. For a couple of reasons I am far more functional than I’ve been in the past. Every day when I think about the crashes I experienced in Colorado and California, and basically all of 2012, I thank every particle in my being that I’m not there again and those parts are over.

That being said, there’s a lot of ‘behind-the-scenes’ work that accompanies life with this illness. I still take a a lot of medicine just to keep my head above water and feel decent enough to do things. I’m lucky and grateful for modern medicine that allows me to feel relief, but I’m still mostly treating the symptoms and not the cause. (We still don’t know it, but we’re getting closer as there is more research than ever) It’s still easy for me to overdo things and then spend a day or two or more recovering. The natural state of my body is pain, and some days I barely leave my room. CFS can be very erratic and navigating it from day to day feels like a job in itself. But by far the biggest factor allowing me to function better and devote time to rest and recovery when I need it is something that’s a bit of a sore subject for me: I am not working. I am thirty years old, a college grad, and I’m not in the workforce.

Even writing that here still stings a little.

In 2011 when I was forced to leave my job, all I wanted was to go back to work. My plan was to recover enough from the crash so I could either return to my old job or seek work elsewhere. I was bitter about not working, and I hated the idea of being unable to support myself. But even my specialist said if I wanted a real shot at getting better, I needed to stop and devote time to letting my body recover. So I did, and while I experienced a bout of health that summer, I crashed again in the Fall, which is when I began this blog. The next year, 2012, was disastrous and I was sicker than I’d ever been. I’ll never forget my sister carrying me on her back up the stairs because I was too weak to climb them, or the deep sadness I felt unable to walk my own dog. That was the hardest year of my life, on a few levels. And I’ve had some shitty years to compare it to! But it was also the year I came to fully surrender to the reality of my situation. I almost didn’t have a choice. Through a lot of tears, weeks in bed, and the care of my family, I made it through those storms and emerged on the other side. It wasn’t easy, but I began to make peace with my circumstances and forgive my experience.

I often wonder if the outlook on my life would have been different if I were told in advance what was going to happen to me. Something like: “Hey, you’re going to get really sick. You’ll have to stop working, but don’t worry, your family and friends are going to take care of you. You’ll feel shitty a lot, but you’ll have new time on your hands to read great books and practice creativity and finally develop the voice in your writing. Remember writing, your lifelong passion?!” I’d probably be like “Oh OK, that’s cool I guess.” It seems like often the source of anger or disappointment with life is that it doesn’t coincide with what we expected or planned. We like to think we’re in control of what happens. And when something like illness comes in and bowls over all your plans, well, it sucks. Mostly because you have to live with the uncertainty of not knowing what will happen to you and relinquishing control. The weird truth I learned again and again through this is that we’re never actually in control. We just feel more comfortable living under the facade the of it. Somewhere deep down we know that our calendars and to-do lists can be wiped out in a second by things outside of our power. But this doesn’t mean we don’t play the entire part of how we face what life throws at us. In fact this is the part where we have the most control. Either you make lemonade, or throw the lemons at people on the street, I guess. In my case it felt like I could stay mad and bitter at the things I lost, or I could try to make sense of the pain and move forward with the lessons and a life that was different than what I’d planned. This took a long time and is something I work on to this day.

To be honest, not working in the traditional sense still tugs at my ego and can make things very uncomfortable. It’s difficult to explain to strangers (and sometimes friends) and I’m well aware of the stigma it carries. I can feel what people think sometimes, and it doesn’t always feel good. At the same time, this is my life right now and maybe only I can know the truth of my experience. Some people will get it and some people won’t, but none of that should really dictate whether I’m able to find meaning in the life I have. My purpose isn’t among the 9-5 world for now, and that’s OK. It doesn’t mean I don’t have one. I just have to look deeper to find it I guess.

It took a long time for me to believe that–mostly because I always assumed the point of life was to grow up and get a job, then marry and have some babies. I never thought to deeply about it or beyond that. Now I work daily on accepting the direction of my life and harnessing gratitude for the things that I do have. In truth it was getting sick that allowed me to pursue writing as much as I have, which was always my passion. I guess I’d call that the Lemonade from sick lemons. Hardy har. Still I look forward to what’s next and other projects that don’t revolve around being sick. I try to use the memories of my experience as fuel and not fear. Mostly I’m just trying to do make the most out of my current situation, and I guess the only thing anyone can do is live and be grateful for the moment, which is now. No now. Well no now its now. Like Deepak Chopras watch says, it’s right-now-o-clock! Life is just the eternal moment.

Health, Happiness, Lemonade.

The Five Days It Took to Turn 30

On Thursday I awoke to the faint scent of change in the air, not unlike the first brisk breeze you feel in late September. But this was not Fall. This was something called ‘thirty’ and it awaited me, ready or not. I didn’t know how it would go down or exactly how I felt about it, only that behind mundane tasks and in the corners of rooms, there it was; stirring, growing, counting down. It caused nervousness, yes, as change often does, but it also caused excitement and irregular bursts of recklessness. At the Circle K I always frequent, I ignored regular intuition when I saw a snickers bar and desired it, but had not yet eaten dinner. I watched myself grab it as though it had always been mine and Circle K had taken it from me. I plop it on the counter feeling proud and dangerous. I’m turning 30 soon, I don’t give a shit.

On Friday, the upcoming change is no longer a scent in the air, but a big red X on the Calendar. I only have a few more days of my twenties and I need to make it count. I have an outdoor lunch with college friends. I keep the conversation fresh. When it hints at boring I steer it another way. We can’t be talking about strangers I don’t know or things I don’t care about at my birthday lunch! It’s so self-involved but I don’t care, I’m trying to get to the root of something. I ask my friends a lot of questions about the states of their lives, all of which appear far more together and grown up than mine. (Jobs, marriage, etc.)  But beyond that I’m trying to gather information. Something within me is trying to assess whether we’re happier now than we were five years ago. I guess I need to know that life gets better with age– a concept I’ve heard but don’t wholeheartedly buy yet. The conclusion is nearly impossible; there are too many variables. When one friend suggests mani/pedi’s I think YES. I need my nails to be in shape for this milestone. I struggle choosing a nail color that complements my mature new age but also suggests my daring nature. (Snickers) I pick a bright, corally orange color. It’s a risk. It’s no ‘soft rose’. But I’m turning 30 soon. Let’s do this ‘cajun shrimp’!

On Saturday, the softest sound of a ticking clock can be heard everywhere I go. Is it my ovaries? Is it the countdown of my ending youth? Hard to say. My body is tired from the muted angst of the last few days and the poor diet choices I’ve made on account of feeling ‘risky.’ I rest a few hours while second-guessing my nail color and making a mental list of people 30+ that are still rocking it. Oprah..Rob Lowe..Kanye.. Next I head to Magazine Street to find the outfit I wish to turn thirty in. I visit my favorite places, and when the sales girls hear I’m turning thirty tonight they say “Awwwwwww” as though I were a wet, lost puppy. They also become exceptionally helpful. Like Don’t you worry girl, we’re gonna get you through this. As I accrue a large ‘no’ pile in the fitting room, finally I’m brought a navy blue floral romper. In the mirror I think This is it. This is the one. Sophisticated print but youthful as a romper. Also my butt looks really good.

Tonight I will have drinks with a couple of friends at Cure, a snazzy bar where our close friend works. I shouldn’t drink. My body straight up rejects alcohol in the form of migraine and then general disintegration of entire body systems, but the cocktails here are good and of high quality. They’re made by mixologists! And at midnight I’ll leave my twenties forever, so gosh darn it, I’ll have a drink or two. A few friends retire early leaving behind my BFF Kaitlin (aka Matt Damon) and the progressive boy I’m dating. He doesn’t like this ‘ritzy’ bar. Something about everyone having on the same outfit. Our friend brings “shots” for the stroke of 12. When the iPhone flashes midnight, we yell and cheers and drink the shot, which tastes like youth mixed with jolly rancher. Kaitlin snags this gem of a photo which at least half conveys the mixed feelings I had.

I’m 30 and I don’t understand my feelings wahh

I am technically thirty now and I feel the burst of recklessness. Should we get forties and go to the park? Light some fireworks maybe? But the progressive boy I’m dating suggests I take it easy. We still have my actual birthday tomorrow. He’s right. We go home.

On Sunday the big day has arrived. I’m getting phone calls and texts while I lay in bed and I’m like God, I love birthdays so much. I didn’t even have to do anything and look at all this positive attention I’m getting! Thanks mom! I soaked in all that love pouring in. Then I realize the small get-together at my pool is supposedly starting in an hour. I am crazy late, it is raining, and the pool turned green overnight. With the help of friends we pull it together. The group trickles in and three different people give me flowers, which shoots me up higher over the moon than I already was. A few of the people at the party I’ve never even met before, and yet somehow almost immediately, a fun and comfortable dynamic forms. One of those perfectly random social events that could never emerge through planning. We swim and philosophize and do birthday things, including passing around my cake in a circle and taking large bites out of it face first. (Kind of what one-year-olds do on their first birthday) We play a very loud game of Scattergories and things turn competitive, quick. There was erratic dancing and a four-part belting of It’s All Coming Back to Me Now by Celine Dion. At one point we were gathered around watching Blue Planet in awe of the earth like Whoooooooa and Woooooooooow! Looking around in that moment I thought Dude, this is perfect. We stayed up late. I guess adults still do that.

On Monday I awake to the haze of a good-time had and party remnants littering the floor. My body hurts. The pool looks hungover. Even Monty is lethargic. I briefly assess the damage and ignore it, then eat a ginormous bowl of Kashi cereal and fall back asleep. When I re-awake, I attempt to “tidy up” but it’s useless. I’m moving like a true geriatric.  There is that Sunday type of melancholy lingering that comes after you’ve had a really amazing time with people and now you’re alone in the aftermath, remembering the fun. I plop on the couch trying to evade it and spot a large vase holding all the different flowers I was given. It’s cliche and sappy, but staring at it I feel a tinge of gratitude and then it explodes exponentially. I don’t feel old, I feel lucky to be alive and to know the people I do. I feel grateful that the people I like actually like me back. So many showed their love to me–In person, people from the past, strangers on the internet, my best friend from kindergarten on FB. It all just overwhelmed me for a minute. I’ve got a family that’s solid and friends who are true and a dog that jumps high and loves me endlessly. If I were a sap on Twitter I’d be like Feeling #blessed.

But I am not.

Turning thirty didn’t change much about me. I feel the same, my battles remain and I’ll continue to do my best. But unlike other birthdays, it finally took me outside of myself, even though it began the opposite. Among the cups and pizza boxes, I felt weirdly inspired thinking of the people in my life. It’s not that they love me, it’s that they love at all. That they’re out there with their own battles and they’re trying too. There’s no one way to do it and we’re all just learning as we go. But thinking of them made me want to try harder. And do better. Not because I’m 30 but because I’ve been shown such incredible ways to go about living and loving– It’d be a waste not to learn from such awesome people. And that’s why it was silly relying on others to prove to me that life gets better with age. Surround yourself by the right kind of people and they are the proof. Life gets better because we get better. We know ourselves more and just that knowing by itself makes so many things easier. For me I’m realizing it’s not about trying to know and understand everything but accepting that I can’t know it all. There will always be mystery to life and part of the deal is living here in the in-between. I think there’s a good time to be had in the middle. There certainly was last night. Anyway, it’s a simple concept I guess. It just took me twenty-nine years to make some sense out of it! Twenty nine years and five days, that is.

Thank you to everyone who helped me ring in 30. It was truly righteous.

Health, Happiness and The Five Days of Thirty

 

Thirty Year Old Girl.

Next Sunday, I will turn thirty years old.

I have no idea what this means really, only that it feels sort of big and at least a little disconcerting. Sometimes I get nervous thinking about it and when I hear the countdown clock ticking, I feel like I’m about to make some commitment I’m not ready for–like I’m marrying into adulthood and I’ve got cold feet. Other times, like yesterday while jamming to Kanye in my car, I think Dude, whatever. Thirty is just a number, and when I wake up on Monday nothing will have really changed.

My disoriented feelings about turning 30 are hard to articulate, but when I came across this artwork by Rafael Verona I thought dude, that’s how I feel.

Just a twenty nine-year-old in the red snowy jungle of life, hanging off branches and…Oh God nevermind.

Anyway, this belief that ‘I don’t really feel thirty’ resurfaces in my mind again and again–looking in the mirror, playing hide and seek with my dog, or while playing Taylor Swift songs loudly on guitar, alone in my living room. But I’m thinking now that sentiment is more an excuse, a denial maybe, of what I’m entering in to. How do I know what 30 feels like? I’ve never been 30 before. Here I am, a week shy of it, and so it follows that for me and my life, this is what 30 feels like. It’s only off because what I anticipated about 30 when I was younger and dumber is far off from the experience I am having now. There’s a lot of ways for a person to be thirty years old, and one is no more essentially 30 than the other.

Maybe it feels off-putting too because I’m growing up in the American culture of avoiding looking our age, of never growing old. This sort of ethos is the basis, I think, behind these campaigns I’m always confronting that say “50 is the new 40” and “30 is new the 20” and there’s no reason we should look like we’re getting older, even though we’re all getting older. Americans, more than other cultures it seems, don’t like the idea of growing old. And so assigning a lesser number to our actual age promotes this mentality that we’re only as old as we look (or feel). And looking less than our age is not difficult to do. We’re surrounded by options, like facelifts and chin implants and chemical peels that burn all our skin off! Not to mention the newer business of Supplemental Testosterone, which is geared toward aging men and is a $2 billion dollar industry now. Even I, feeling angst at the number 30, am trying to excuse it by reassuring myself that I don’t look thirty, as if that really means anything. It’s pretty stupid.

I should be happy to be one year older. I should be especially happy to have survived and officially move past my twenties. A lot of them were exceptionally fun, but there were a lot of mistakes and pain too, often the result of being young and not knowing better. I know that the more I understand and know myself, the easier my life becomes. When I reflect on some of the hardest parts of my life, they were often during periods that I didn’t understand or had forgotten who I was, and being lost like that causes its own type of pain. As cheesy as it sounds, every year I grow older has meant a year of knowing myself better. And being in touch with who I am means understanding my strengths, recognizing my purpose more clearly, and grasping the meaning of my small life in the context of a larger whole. Carving out where and how I fit into reality is one sure way to feel happy and fulfilled. And every birthday means I get a little closer.

….

….

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ON THE OTHER HAND I’M STILL KIND OF FREAKING OUT AND BITING MY CUTICLES A LOT AND I FEEL SORTOF CONFUSED LIKE IS MY YOUTH OVER? AND DO I HAVE TO REFER TO MYSELF AS A WOMAN NOW OR CAN I STILL BE MARY THE ‘GIRL’? IS THIS WHERE THINGS BEGIN OR IS IT ALL DOWNHILL FROM HERE? ANY ADVICE IS APPRECIATED I’LL JUST BE HERE TALKING TO MY DOG. THANKS.

Health, Happiness, Thirty.

(Ew)