1. The “You Spend Too Much Time With Your Friends and Not Enough Time With Me” Fight. It’s not that I hate your friends, I just think they’re stupid and don’t really want them around.
2. The “You’re Terrible With Money” Fight. Did we really need these $20,000 life-size Rock ‘Em Sock ‘Em robots?
Yes, yes we did.
3. The “I’m Allowed to Talk Shit About My Family but YOU BETTER NOT” Fight. Excuse me, nobody calls my sister a slut but me.
4. The “You Drink Too Much/Smoke Too Much/Work Too Much/Play Video Games Too Much/Sleep Too Much” Fight. You do all the wrong stuff, too too much.
5. The “ANYTHING Regarding Facebook” Fight.
Who’s that slut who wrote on your wall?
Why haven’t you changed your relationship status?
Why aren’t I in your profile picture?
Why are you still friends with that person?
Why won’t your dad accept my friend request?
Who is Brittny and why did she poke you 2 years ago? Defriend her. NOW.
6. The “You’re Always Tired When It’s Time for Sex But Wide Awake When the Kardashians Come On” Fight. Come on, you know you love Scott.
Nuff said.
7. The “You Give Terrible Presents” Fight. Awesome. Another candle. Thanks babe.
8. The Failure to Agree on a Show You Both Like So You End Up Watching Stuff Neither of You Really Likes Fight. Oh look, No Reservations is on again.
9. The “I Shouldn’t Have to Ask You To” Fight. Because you should be able to read my mind by now.
10. The “You Have Terrible Phone Etiquette” Fight. There’s this thing. Called a phone. Try it out…
11. The “If You Like It You Better Put a Ring On It” Fight. Because nothing sets the mood for an engagement like the threat of a breakup. Or physical harm.
Whoa Oh Oh Uh Oh Oh Oh
12. The “I Was Lying When I Told You I Didn’t Want Anything for My Birthday and You Should Have Known That” Fight. You could have at least gotten me a card. God.
13. The “You’re Nicer to the Dog Than You Are To Me” Fight. Well he’s a better listener!
Tell me. Everything.
14. The “I Went Through All Your Shit and Found Something That Makes Me Not Trust You Anymore” Fight. You never told me you ran track in high school.
15. The “If I Didn’t Pick Up After You, Our Apartment Would End Up on Hoarders” Fight. Why do you put your clothes next to the laundry hamper?
I discovered the cure for insomnia–it’s waking up! So here I am. Totally tired, but unable to sleep. Go figure.
I’m writing from the luxury of an aerobed in the living room with New York City rain slanting down our windows. There’s something about New York that makes me feel connected–which is funny because it’s a large city of strangers who don’t know or care about me, but on a walk outside I feel like an absolutely intrinsic participant in life and that things are as they should be. Even inside an apartment, on the third floor, behind shades..the pulse beats in. I like watching people walk down the sidewalks, enthralled with their busy lives. I like seeing every breed of dog and owner pass in front of our building. And I like seeing a light go off in one room and on in another. No one seems to notice me at the window, but I smile at them if they do.
It’s funny how at home I feel in NYC. And I sortof cheated at New York. I lived and worked here for two summers and spent a few months here last year when I was sick and jobless. My first job was an unpaid internship at GLASS Magazine in Brooklyn. It was unpaid, so my brother let me stay with him for free, and he gave me the bed. The next summer I came back and served drinks to tourists and New Yorkers on a sailboat called The Shearwater that toured the Hudson River. That job seems way too cool for me to ever have had, but my brothers friend got me the gig and I took it. That job paid but Nick let me live rent free anyway. I say I cheated at New York because as most New Yorkers will tell you, it’s a hard city to sustain in. Not just financially or career wise. It can be a dark city too; isolated, unapologetic and relentless. Most people here have gone through some sort of struggle tied to the city in order to get where they are. I on the other hand never really had a struggle to overcome here, because Nick did that for the both of us. He moved, worked hard, met cool people, found all the best spots, and then just sort of shared them with me when I came. In that way, New York has always been glamorous to me. It’s the New York in the movies. All my attachments here were temporary and I never owed anything to it–except those $600 in parking tickets I accrued that one summer. Shit, I still need to pay those.
I’ve spent the last week making art, listening to music, and wondering what’s in store next. I’ve started to become a lot more comfortable with the uncertainty of my life. There is no plan. There is no “mine.” And there’s not much money or organization. I don’t even unpack my suitcase when I go home anymore. But that’s something I think I needed to go through. There are no certainties in life. Even the most promising plans aren’t resilient to fairness or the universe. As much as I used to think there was, I see now there are no rules, and no fair or unfair. There just is and I just am.
I always have this fear that when I sit down to write or draw that what I create will be terrible. I guess the fear is that if I create something terrible, then I haven’t succeeded with the purpose, and then I’ll be cursed and everything I create from then on will be crap. But I see now that not only is that fear irrational, it’s useless. I know this sounds a lot like an after school special, but the real failure is never sitting down, and never giving voice to the things that move you. When I was here last spring I was strongly considering doing stand-up comedy at a comedy club run by my friend Mark. It’s something I’ve always wanted to try, at least once. Because the thing is, if I bomb, then I’ve got this great story: I did stand up comedy in NYC when I was 27 and got booed off the stage. WINNER. And if I succeed, then I’ve made real New Yorkers laugh–and that’s a hell of a story too. I was speaking with my mom about it and admitted I was nervous to try and she said “What’s the worst that can happen? You get on stage and no one laughs?” “Uh, right. Yeah. Exactly that.” That was the worst that could happen, and that scenario is kind of a nightmare. But I think going for it is a success in itself. The very act of braving the audience and swallowing the risk of humiliation is half art in itself. One day New York..I’ll tell you jokes one day.
Anyway, I’ve decided I’m just going to keep trying things. I’ll keep drawing even though I’m not very good and I’ll keep writing even though I don’t really know where it’s going. There have been few certainties in my young life so far. But I do know that every person I look up to has continued and persevered even when they didn’t quite know where they were going. They took risks and they didn’t always play it safe. So I’m going to keep creating. Even when I’m tired, even when I fail, even when I have no idea what in God’s name I’m doing, I’ll just keep going. And hopefully along the way, it will happen one day. Whatever it is I’m looking for, I’ll find it. Something tells me I’m close. Or maybe it’s just begun. Either way- like the struggles and people and persistence of NYC, I won’t spend so much dissecting everything–I’ll embrace change as it comes and forgive all the plans I had. There’s just no other way to do it.
Here’s the most recent drawing. It’s titled: “As You Can See, I Don’t Have a Job” 8.5 x 11. I’ll post the rest tomorrow.
Here is the truth; you’re not missing out on anything if you don’t get on Facebook today. I’ll fill you in: Someone got engaged. Someone had a baby. Someone is angry at Obama. Someone cooked spaghetti. And someone is hung-over after going out big last night. But if you spend the day on Facebook, you’re missing out on all the rest. You know, like on life. So now here’s 10 things you can do instead of get on Facebook, that might actually make you feel better.
1. Forgive somebody. There is probably someone or something from your past that needs to be let go of, moved on from, and it might even be you. Letting go of things in the past opens up room for good stuff in the future. Go!
2. Appreciate who and what ya got. Having a gratitude journal sounds super cheesy I know, but once you start writing down everything you’re thankful for everyday, you’ll see very subtly your whole perception change for the better.
3. Create. Make art! Or a sweater! Or music.Or dinner! You’ll be surprised at what you end up making. And have someone in mind when you create. The best gifts are home-made.
I made you this sweater for your dog!
4.Exercise. Even if it’s just a walk outside or 15 minutes of yoga… exercise releases serotonin and adds years to your life. Imagine if you did 10 sit-ups/push-ups for every 10 minutes you spent on Facebook. Everyone would be all muscley and stuff.
5. Bake a cake for someone. Anyone. Just because you love em. It’ll make their day! Let us eat cake.
Because You’re You and I’m Me
6.Organize your closet, dresser, room, or junk drawer. Cleaning things out just feels good, it’s free, and the end result will make you breathe easier.
Aaah.
7. Occupy Wal-Street. Just kidding. Couldn’t think of a good O verb. Uh, organize your second closet!
8. Kidnap someone and bring them on an awesome adventure. Dont actually blindfold them and throw them in the backseat of your car or anything..just bring them to lunch or something. And then maybe antiquing.
9. Read a book. Remember books? Instead of getting lost in an anonymous persons wedding album on Facebook, (ahem, yeah that’s me) get lost in a book. It’s such an awesome feeling. And you don’t feel like a creeper by the end.
10. Write and send a letter. Not an email, not a text. A real letter, written in your own special handwriting. Old school mail dude, it’s the best! (May take 2 weeks to arrive though. The post office has had a rough year.)
Health, Happiness, Lifebook. (See what I did there?)
I’m writing today from a very foggy place. I have to concentrate really hard when I consider what day it is, what the date is, and when someone asks me questions it takes an unwarranted amount of time to answer. This is my 3rd day in bed, and as much as I thought today would be better since I literally slept until 6 pm yesterday and fell back asleep at 9 pm for the night– I’m still not feeling much more alive. Luckily, my mom and I are still holding down the fort on rich people island. One of the worst parts of being in a full-blown crash is how isolated it feels. Luckily at this residence, my room has huge windows and an amazing view, so while I was only awake 3 hours yesterday, at least I had nice things to look at.
Not Too Shabby a View
I know to an outsider this seems ridiculous. And I’m sure there are people out there thinking “You’re simply sleeping TOO MUCH, and that’s why you’re so tired!!!” If I had a nickel…. It’s very hard to explain what my body feels like amidst a crash, and this one is one of the worst I’ve had in a long time. I think it was Laura Hillenbrand, author of Seabiscuit and longtime CFS sufferer who said “Calling it ‘tired’ is like calling the atomic bomb a firecracker.” The only reason I got out of bed yesterday was to go to the bathroom and to take medicine. My mom tried to wake me up a few times and get me moving, but the thought of being upright nauseated me. Finally at 6, she made me drink a huge class of orange juice and eat toast and eggs so my body wouldn’t be running on empty. While I ate we watched a show on the science channel about the science of memory, dreams, and what makes us who we are, which was pretty mind-blowing. But by 9 I had fallen asleep again. I remember really really wanting to brush my teeth last night but standing that long just wasn’t going to happen, so I skipped.
Beyond the ridiculous fatigue are other symptoms that have been difficult to find relief to. I’ve had a non-specific pain radiating throughout my body, kind of like my bones are aching, that did not respond to pain killers. I’ve had a headache for a few days that is not a migraine but won’t go away does not respond to regular meds. Today at least the pain has let up and the headache has improved, but that heavy, wet-blanket fatigue hasn’t gone anywhere yet. When I woke up around 9 this morning, I sat up slowly in bed just to have my heart race and beat loud in my ears followed by a dash of dizziness to seal the deal. Good morning! God loves you!
The last symptom I’ll share, because we’re having so much fun here, is one of the most bizarre. I have this extreme sensitivity to sound that at times turns me into a crazy person. When I first became sick at age 9 this was one of my first and most jarring symptoms. Things like a hair-dryer, vacuum, or even the neighbors lawnmower were suddenly somehow painful, almost unbearable. I am noticing now that when my symptoms get bad, this sensitivity becomes heightened. It isn’t just loud noises either. For instance if someone leaves the laundry room door open with the washer or dryer running, I basically can’t relax or think straight until it’s closed. If someone is playing the radio in the car and there is static in the background, I feel like my head is about to explode until we switch the station. And it usually happens in the middle of someone telling a story that the sound of static becomes so overwhelming it’s all that I can hear, often causing me erupt in an erratic verbal explosion like “FOR THE LOVE OF GOD CAN SOMEONE TURN OFF THE FREAKING RADIO?! I FEEL LIKE I’M ON CRAZY PILLS!!!!” And then everyone looks at me like I’m on crazy pills. But in my brain, the sound is the equivalent to nails on a chalkboard. I’ve found that many people with CFS have at least one of their senses which is painfully heightened. For my mom it’s her sense of smell; one whiff of the wrong perfume and she can get an instant migraine. Don’t we sound like a bucket of fun!? We are. :)
On day 3 in bed, I was mulling over the last week in my head, trying to piece together the puzzle of what-in-God’s-name happened to land me in bed this long feeling like I was hit by a cement truck and then rolled over by it once or twice. There are a few possibilities and I’m pretty sure it was a combination of all of them which created the perfect storm, but one in particular: I pushed myself for too long. Since my family is rarely all together in the same city, I hate to miss out on anything when we are. My brothers are two of my favorite people–they’re a lot of fun. They’re also two of the most hyper people I’ve been around. They were very go, go, go while they were here, and since I love to be around them, I tried to go, go, go with them everywhere they went until I die die died. It’s the same lesson I’ve had to learn before that I will continue to learn until I get it right; I have to limit myself. No one will do it for me, mostly because no one else has to pay the price of overdoing it, only I do. And I’ve overdone itso many times you’d think I’d have it down by now, but I don’t. I have to learn to say no. It does mean missing out on some things that I’d like to partake in, but the alternative is missing out on 3 days of life, and you never get those back. The doctor calls this being proactive vs. reactive. If you can sustain yourself by limiting things and paying attention to your body, you can pretty effectively avoid crashes and super-sick days. There were a couple of days last week I didn’t feel great but made the decision to go to the beach anyway, or go fishing anyway, and those anyways ended up being pretty detrimental.
Just so we’re clear, I don’t write posts like these to be depressing. I’m not doing it to complain or fish for pity. It was my goal from the start to try my best and paint an accurate picture of what life with this illness looks like. And sadly, some days or weeks, it just sucks. No getting around it. At the same time, I remind myself this won’t last. I study the things that got me here, and I thank God I have family (mostly Dr. Mom) to see me through the really tough parts. I wonder a lot how anyone would survive this illness alone, and I honestly don’t think it’s possible. Everyone I talk to in the waiting room at the specialists office has one primary thing in common; they have one person to whom they owe their life. A spouse, a parent, brother or sister, child or friend. CFS isn’t terminal. You don’t die from the symptoms. But I really can’t imagine where I’d be if I didn’t have the help of so many people in the past. Sleeping under a bridge somewhere. Keyword: sleeping.
In the light of friendship, I’d like to share the Gelpi’s rendition of one of my all time favorite songs from one of my all time favorite shows: Thank You for Being a Friend, from the Golden Girls. Luckily my brother Doug can basically play any song you ask him to on the piano, so he did me a solid. My voice is terrible so I apologize in advance, but hey, it was fun. This is dedicated to Emily and Kaitlin aka Matt Damon.
FibroM.E.-Awesome 