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.

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.

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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