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.

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

A Thousand Reasons Not To

This summer I enrolled in a creative non-fiction class at Loyola in New Orleans. The class was a workshop style and the 12 of us made for quite the diverse group. We varied considerably in age, sex, race and background. Together we could have easily graced the cover of a brochure for a city’s Parks Department or a Volunteer program of some sort. But we all wanted the same thing– to write, and for two months that’s what we did. Our teacher was a classic local New Orleanian who was an active writer in the city and taught in the MFA program. He always wore short sleeved Hawaiin shirts and had a pleasantly laid back approach to teaching. After the first class nerves and politeness wore off, we submerged into a chemistry all our own.

Here's a few of us in an elevator selfie I made us take.

Here’s a few of us crammed in an elevator selfie I made us take. It was late. 

We spent the summer writing and reading and critiquing each others work. I knew there was a lot to learn in our short time together, but I loved more how enjoyable and interesting our sessions were. We all shared this passion, but it was more our willingness to show up every week, to put things out there we weren’t always comfortable with, and to give and receive critcism with honesty and humility. Because of our many differences, we had very engaged discussions, and it was so refreshing to hear the voices and opinions of people who were so different than me. It sounds cheesy, but having that diversity made such a difference. When I reflect on my college classes it strikes me how homogenous they were. I was mostly surrounded by people who looked the same as me and were after the same things. This was different. Better, I think. I remember after the first class feeling so grateful that I signed up and went for it. I noticed it advertised on a coffee shop wall. So often I feel an interest for an “extracurricular” like that and tell myself one day, but I never follow through. I was glad I did this time.

The truth is that “One Day” is always “Today” right? That’s probably a bumper sticker somewhere, I hope. But there really isn’t any other day than this one, which is why one day hardly ever comes. It’s already here!

At the end of our last day of class, someone asked our teacher if he had any final advice for us before we all parted ways. He thought for a moment and then gave a subdued, thoughtful response. “Everyone is always asking, ‘When can I call myself a writer?’ or ‘What makes someone a writer or not?’ It seems so obvious, but the simple truth is that a writer is anyone who actually just sits down and takes the time to write. Who works away at his desk and grinds it out, again and again and again. It really is about just making yourself write, day after day, which is very hard to do.”  I remember thinking how simple but powerful an answer that was. So many people in the community, including me, ask that question, and so few people actually commit to the time and vulnerability and work it takes to create meaningful and honest writing. I think sometimes the idea of things is more appealing than the reality, which is always far less romantic.

I’ve been reflecting on his answer more recently as I’ve committed myself to a writing project that constantly challenges me. It boggles my mind that each morning when I sit down at the computer, I feel the same fear that I felt yesterday. I feel an uncertainty that’s totally unnerving. It makes me see and think of a thousand other things to do, besides writing my inside out. I see dust and think that I should dust. I realize a cluttered desk is no place to write so I clean that out first. I see paper and think I’ll make a list of other things to do, then cross each one off, then sit down and get to work. I check my email just to make sure there aren’t other things I could or should be doing. God forbid I enter the world of Facebook or Twitter or the black hole of the webosphere, never to be seen again. It’s crazy how much time I spend doing other things, with a fantasy in mind that once they’re complete, then I can write. It’s all a facade. It’s another One Day. There’s no perfect place to write, no ideal time, and no shortage of other things to do instead. I thought that once I did this long enough, I’d just wake up and start typing until nighttime and then do it again the next day. That I would overcome the fear once and for all. Not so.

Every day I feel a resistance to do the thing I love and deeply believe in. It’s strange and challenging and completely frustrating. It sounds like such a psychological cliche, but apparently this is a common defense mechanism that most people confront. If you don’t actually try and put stuff out there, you don’t run the risk of failure. Or rejection. In effect it’s just safer not to try. So we become skilled at finding ways not to. But it’s also boring and cowardly to give into it so I try and fight it all the time. Sometimes the fear wins and I don’t try that day. I alphabetize my medicine cabinet instead.

The flip side is, when I go too long without writing I feel like that kink in a hose running on high pressure. I get irritable and uneasy, like I’m going to POP at any moment. I can almost feel my insides stirring and expanding and the answer is always to let them out through words. It reminds me of something Marc Nepo wrote: “Talent is energy waiting to be released through an honest involvement in life.” True dat. The time before I write and the act of sitting down to write can be unpleasant and is usually really hard. But the feeling after I’ve written tells me that it’s what I’m supposed to do. I always feel better once I’ve done it, and sometimes if I’ve done it well, other people feel better too.

Whenever I watch really successful people on TV or listen to them speak, it always occurs to me that they got to where they are because at some point in their lives, they decided to try. And they too faced risk. But that’s always how big things begin. I used to think successful people were that way because fate had it in store for them. I thought they were chosen, as though success picked its people like teams in PE class. Now I realize truly successful people are all very different, but are triumphant in their aspirations because they’re true to their gifts and trust themselves enough to put it out there. They risk failure, but they get a chance at changing things, or going big, or living out their dreams. And how many of us are living out our dreams?! Even if they failed, they’d at least have tried, and there is success and respect in that alone. Some of my best stories and biggest revelations came from me failing first. Did you know I auditioned at Julliard? No, because I failed. But it’s also how I learned I wanted to write instead of act. Plus it makes a for a funny story now.

Our writing teacher told the class he had written two novels but so far no publishers had signed on to them yet. I was really impressed hearing that. I think actually having sat down and written a complete novel, start to finish, is a huge accomplishment. It takes such dedication and time and work, and he had written two. Even if they never get published, having two completed novels under your belt is awesome. Especially because writing is such a lonely thing– no one is really encouraging you or congratulating you until the work is finished. And you always run the risk that at the end of your hard work, it won’t be well received. I guess that’s the vulnerable part we all face any time we embark on an endeavor. But I don’t always think it’s about the finished product anyway. It’s more that we’ve dedicated ourselves completely to something, worked hard at it and saw it through to its end.

It is common sense to take a method and try it. If it fails, admit it frankly and try another. But by all means, try something.
-FDR

Health, Happiness, and Try Try Try Again.