Healing, It Hurts

When someone with a chronic illness glimpses remission, It's sort of like what most people would expect- a super joyous, exciting and wonderful feeling that, for an instant, washes away any terrifying thought of what it had been like to be sick and waiting for such a day. Some sickies wait years for this feeling, stuck beneath the rest of the world, and I myself am no stranger to it. But what's it like when you're actually in the thick of healing? When you hit the layer of dirt jusssst beneath where the sun shines on the surface? 

Some unlucky and very brave individuals know that there's a roller coaster jammed into that layer. And a tilt-a-whirl. And I can't tell you how many other suspiciously, unsafe-looking pieces of crap machinery there are, meant to confuse the fuck out of anyone on their way back up. 

Fortunately, there are ways to cope with this ridiculously bogus and unfair part of healing. But, it still hurts. You find yourself again when you're body is better, but what no one tells you, is that if you've been sick for an extended period of time, that person you've been waiting to meet again quite possibly may have never ditched his or her unsavory character flaws or deep-seeded issues. Fighting the good [sick] fight turns any wimp into a stallion, but if there were things in there like emotional or psychological issues that were never addressed, the person in the mirror looks less like your old self, and much more like a rhinoceros. I'm not sure why I used rhinoceros there, another part of healing is growing back into your brain's comfy cognition. Never mind the slough of issues that had developed while you were sick. So, what's the best way to heal with your bad self while navigating through your new and exciting life?

Let's start with a basic How-To:

[Unfortunately for you, I never tire of these]

Be Up Front

When you can't remember making plans with friends, or even to be in contact with them, or that you were supposed to keep someone's pregnancy a secret, or you forgot your Goddaughter's birthday, or you went ahead and cried into your pizza for no good reason in front of a bunch of townies at a favorite dive bar and totally freaked out your dude, or that you know you'll DEFINITELY not be participating in any of these online challenges, SAMANTHA, be honest with the people around you regarding why. Staying home and crying to your Puffins cereal is VERY okay. Just make sure you're getting the point across that you care. And you know, write things down once in a while. 

Know When to Call It

Think you might be too emotional about seeing people that you used to, or attending a party similar to those before you were sick, or that you're just not feeling a snug sesh with your ladyfriend or fella? Say so. If these people are worth their salt, they'll attempt to practice understanding, and you won't end up in a ball on the floor three hours later, regretting you left your house.

Apologize for Hiding

Remission means an ebb and flow to how comfortable you are around others. Some days, I just can't do much more than lay around and reflect on how different my life has become in the last year, since reaching remission. Yes, I'm sob/laughing and having full-blown conversations with my dog/ pain management specialist. For me, sometimes that's just necessary to getting through those moments. 

Apologize to [and forgive] Yourself

This is your own. 

But I choose Kung Fu and those orange gummies with the terrible sugary coating. 

When You Need Help, GET HELP 

Save us the time here and just do it, please. It'll be spotty, and you'll blow it off because remembering is painful. But the only way through it, is THROUGH it. Personally, I've been exploring what it's like to have never been diagnosed with a fierce case of ADD. Turns out all of those "attempts" at things make a whole lot more sense, and I'll be better for even trying to understand why. Countless apologies and my incessant thoughts of unwished happiness for wonderful occasions, unfinished collaborations, and never-done favors are something that I'd like to extend to so many people that I care about. 

I sometimes want to tell people who I know are sick, that the journey is so much more than reaching the point that I've gotten to. I understand that communicating something like this should, and does, come with such deep feeling for every individual's experience here. Crohn's Disease both ruined, and saved parts of me. I couldn't be the woman I am right now if I never got sick. I don't regret or hold bitterness for my body. Letting go of that has made this journey much lighter, but I am, and will be continuing uphill for probably longer than I'm anticipating or giving credit for. I can't give much more advice on how to move faster or lessen the load, as I'm still figuring it out. I just want anyone else in the same place on the trail to know that they're not alone. 

Water Wait

I've never been sailing. I imagine racing over the ocean with the strength of the wind behind my schooner [that's a fancy sailing ref for those who care] would be pretty amazing, though. You know how sometimes you feel driven to do something really important? Like some beautiful force has it's hand on the small of your back, willing you to keep sailing until you carry it out?

WAIT.

I'm realizing that maybe some of you don't. I know that for a decent chunk of my life I didn't. It happens. You may spill some mango chutney on your fresh new Sperry's on sailing Sunday, sending you into a tizzy so uncomfy that you fall right off your fancy boat, dickey and all, into the heavy current of the ocean waves.

If you know how to swim, which I do [slowly and as awkwardly as you can imagine], it's not impossible to breast stoke your way to shore again. Or at least to some other sailor's boat for a bit, if that's what you need. I don't know the sailing term for bestest pal, so I'll simply call it "Meg*". That Meg might throw you a towel and giggle with you at pictures of half-naked hipster dudes until you're ready to get dropped off at your own boat again. 

*The name Heather may also apply here. 

When you do finally arrive in a safe place, though... when you are happy with how far you've been able to travel without swim-puking, the feeling is wondrous.

Kiiiinda like this.


There have been few moments in my life that felt as wonderful, but I treasure them and constantly hope for more. The greatest part is that I hadn't even believed I would get to this place. The last three years have been the biggest test I could have had. It didn't take much--just my voice. 

Now that I'm approaching top sailing speed, I don't resent that part of my life at all. I must admit though, that I am just a little nervous. Hence the lingering swim-pukes.

My poor boat shoes.

Double Agent

Has there ever been a time in your life that you remember living as a version of yourself? 

It's possible that some people may find this difficult to relate to [I'm jealous of and applaud those who do], but when we're going through something tough, sometimes we become so used to motion on autopilot, that we forget how to use our manual controls as the days start to get brighter. 

Years and years of full-of-shit song writers and Etiquette books have told us that we should, "Put on a happy face", "Smile, and the whole world smiles with us", and, "Don't cry on the subway in the middle of the afternoon". I personally think that this is all a load of crap. If you don't express what you feel, you'll end up sitting on it until it leaves a frowny face divot in one of your ass cheeks. Just not cute. Being polite is one thing, you definitely should NOT- under any circumstances- hurt anyone Hulk-style if they get in your way on an off day. However, if you don't let out your sniffles [or if you're a manly man and don't cry- your pent up aggression], faking that happy face can end up... not so much in your favor.

While I was sick, I started putting forth a version of myself that I wanted everyone else to see. Partly because I felt like I had to, and partly because I thought it might help to jump-start a little happiness in my life. Not that I faked any interests, friendships or intentions, but really now, how much of your vulnerable side do you let your semi-close friends see? What if your vulnerability is already all over the internet via Instagram or the dreaded Facebook? You want to be strong, right? You want your pals and acquaintances to have a good feeling when they're around you. And not spend time bogged down feeling bad for you. You want to feel inspiring, and inspired...

I'd better not be the only one guilty of this. 

But you may wake up one day and realize, "HOLY FUCK..." And I can use as many curse words as I want to, because I'm no longer with a publishing network and it feels wonderful, "I've been trying so hard to make everyone think that I'm THE STRONGEST PERSON ALIVE, that I've actually become weaker in the process". 

Let me make myself perfectly fucking clear:

Keeping up with appearances is a total waste of time. 

If you feel like crap, stay home. If your friends are putting together a party and you know you're going to feel anti-social, go to the library instead. Cry alone in your bedroom and line all the pillows you own up to punch in rapid succession. Most of the posts I write are instructional, but here's a secret: I write them for myself. So I can look back on them and take the advice that I listed months, or even years, before. I'll be honest- sometimes it's really fucking hard. I've gone months without writing- or even reading- because I knew that I just wasn't strong enough to address the resentment that I had for getting sick in the first place. The honest truth is that I still struggle with it. It's probably not something that will ever really go away, but I'm getting there. 

And these days, I'm not afraid of letting the world see that.

If you're feeling bat shit cray, or you just want to be negative for a while in your room- DO IT. Don't waste your energy trying to push that down into your super awesome depths. They'll just start rotting away. Explaining the smell to your friends and loved ones and trying to get them to stick around and ignore it is a lot more awkward than losing your strength sometimes and letting it be seen.

You beautiful idiot.

When To Stop Fighting

Once upon a time, there was a young girl who fell ill and ultimately lost everything. 

Over three years, the girl slowly regained the strength and mental clarity it took to give her life another healthy chance. What she didn't expect was an uphill, and often times negative battle more terrifying than knowing and learning to respect illness. And she became addicted to that battle. 

Unfortunately, fighting for a career and well being and the perfect romantic relationship is different from reasons behind fighting just to fight. It can be hard for the ones healing to keep this in mind.

"WHAT DO YOU MEAN THERE'S NOTHING ELSE TO TRUCK THROUGH?! WHAT DOES REMISSION EVEN MEAN?? MAYBE I SHOULD START KICKING PUPPIES AND BABIES AND EVERYONE I LOVE  

because I don't remember how else to be and I CAN'T STOP TELLING MYSELF THAT EVERYTHING STILL HURTS."

This is one typical string of thoughts that people who used to be sick and aren't anymore have, even when they're feeling better physically. My body feels great, but the lists and lists of stressful things that normal, healthy people figure out how to balance out as they grow into fantastic, hysterical and wonderful adults feel more and more foreign to me with every cool story from healthy, well-adjusted friends. 

HERE ARE SOME THINGS THAT HAVE BEEN HELPING.

GOOD FRIENDS

[The kind that you don't mind letting sleep over after a night of too much wine.]


GOD DAMN THERAPY
Just go. Even if you've never been sick.

FUN.

I don't care if you get your jollies by flashing your neighbors... unless your my neighbor. In which case, bring it on. Just do things that are silly and amusing before letting yourself blow up or break down-- and don't worry about how you look whilst doing so. Here's the honest truth, baby: NO ONE wants to deal with roller coaster emotions, but if you MOVE YOUR ASS and don't look in the mirror before you do it, it may help. Really. If you feel like poop on a stick, you probably look like poop on a stick. Who wants to psych themselves up for awesomeness if they get all self-conscious and blah blah blah?? In fact, put your mirrors in storage. Life is about enjoying yourself- not what you look like when doing it. Something else? The happy people are the attractive ones.

GET YOUR ASS INSPIRED

[Gili, do you know about this bad bitch??]

EAT WELL

Please? 

DON'T JUST SIT THERE--

Go exercise. Jerk. Do you know how many people wish they could move their bodies, you sunnava bitch??!

DON'T WASTE TIME AROUND PEOPLE THAT DO ANYTHING BUT LIFT YOU UP.

I'm serious. Fuck that noise.

BE ONE WITH NATURE.

Run. Dance in the sun. Hike your face off. Screw staying inside. It will kill your spirit.

Being ready to make your life better takes commitment that you've probably never had to give before. You'll be your worst enemy. Not every day will be happy. People will piss you off, make you jealous, and test your newly found, happy and centered patience. You'll resent your friends, your family, your dog... and anyone who seems happier than you do. You'll learn more about yourself trying to change for the better than at any other point in your life. And you'll be one of those people who never shuts up about it.

I'm not quite there yet, but once I am...I hope I never do.

On Standing Down

Adults make decisions. 

Granted, I live in America and a rather large number of decisions that I witness adults make are rather questionable, if not down right insane. But we're free, and encouraged, to create our own destiny, adventure, or whatever the hipster kids are calling it now. And we're so, so lucky to have that opportunity.

But what about when you've made yourself so informed of the potentially negative or painful results of one decision, rather than the possibility of a victorious outcome? 

OR, you've taken so much of what the people who love you have to say about what it is you should do, that you stop hearing your inner voice?

I'm smack in the middle of making the huge decision of whether or not to start a medication. And I've been here before.

I don't want to be this person anymore.

I'll be honest. The idea of becoming an anti-pharmaceutical crusader and fighting for the natural treatment of my disease and others was an enormous part of my heart for a long time. But I'm sick. And I'm tired. And I feel that if I don't do something soon, I'll be in the comfy wing of the hospital that I know so well, wishing I'd have listened to my doctor. Again.

And blaming her for it. Now, almost one year to the date that I started Remicade, I'm in the exact same place.

I don't want to give up trips, wonderful jobs, and the opportunity for what feels like a normal life. I don't want to hurt my relationships because I'm miserable, or lose parts of myself that I love so much because I'm too afraid to live my life... and I want to smile, feeling amazing and warm, with a baby in my belly. I have to take a leap of faith now and use my brain. I know what a desperate feeling it is to find relief from illness. I know it so well in fact, that I withheld it further from myself because I wanted that healing to come from a natural place. But there is nothing wrong with a band-aid.

If you take it off before it heals into your skin.

For fuck's sake, guys. When you feel it's time to do something, do it. I can always say, with acceptance and self-respect, that I tried.

Because in all actuality, if I don't follow my heart, the only person I'll be disappointing is myself.

New Year, New Fight

Happy New Year.

I am seeing this new measure of time as a good thing, but it will come with an enormous amount of work. My usual, bring-it-on attitude has faltered in the recent months. While I'm still excited about starting 2013 in healthy, happy ways, it's that work I mentioned that I'm having trouble keeping my mind from.

Crohn's remission is something that I've patiently waited three long years for.

I thought that if my body was better, my life would be better.

I've had difficulty going to friends and family with the darkness that's been in my head, my heart. It's documented that after surviving traumatic experiences, people suffering from chronic illness are susceptible to major depression. I continued to stay as positive as I could, given the trying situations that were thrown my way, because I thought that I could be strong enough to avoid it. But with that attempt at such prolonged patience came very much anger. I knew that there was a chance that I could become seriously depressed. You start to mourn the life you lost after being so sick.

You start to hate things you spent years loving. And forget about what made you so happy, you could shit.

For weeks, my routine has steadily dwindled to lying in one place, just as I had when my body gave out on me. I look back at pictures, like the one below, and wonder why anyone would choose to revert back to such a sad place as that. After all of the fighting that I did to get myself back. The truth is, I must have just gotten comfortable there. It was easier to stay inside and sleep than to engage in interaction with the people that I know. It's nothing personal, but being around anyone makes me uncomfortable and question my every move and word.

Stockholm Syndrom.

I've lost interest in conversation with good friends, my family, and the growing responsibilities that I've been so looking forward to- in ways that I hope most of you will never understand. 

I've lost faith.

Despite his desperate pleading for me to get help before I finally did, I just about pushed the love of my life right out of it. 

I've stopped caring about hurting myself. I've stopped caring about everyone, and everything. And I'm so, so sorry.

I've stopped caring about being alive.

Writing this is the last possible thing that I want to be doing right now.

As hard as it is to put this out for everyone to see, I feel somewhat responsible to do so after sharing so much of my journey with Crohn's Disease with other sick people. 

Stale Cabbage took me away from my Crohn's and into a place where I made the rules. I was the boss. My posts were funny to me, they made me giggle at my secret wit. Writing these entries gave me the opportunity to show myself that I wasn't just some sick person. There is a wealth of knowledge at our fingertips to use in healing. I used it to my advantage and stayed the course in getting to that place once. 

I'm making the decision to do it again.

Dear friends, please know that there is nothing worth keeping to yourself that may hurt you. In the sunshine of this new, January morning, I am creating a relationship with myself. If you are thinking of hurting yourself because you lost hope for who you are, could be, are having trouble regaining your life, or are still unable to pinpoint exact reason, please contact someone who loves you. There ARE people that love you.

I am proof that you can find your voice and attempt to save yourself.

For my friends and loved ones:

Some of you may have noticed drastic changes in my attitude, and my withdrawal from social interaction. Please understand that I am seeking help, and am in the hands of wonderful doctors and close friends who know me well and are aware of these sad changes. My healthcare team does not take healing from something I've gone through lightly, and we were more than prepared for such an event. I am heartbroken to have been affected by something so nightmarish, but will continue to heal as I can. 

I know full well that here is very much love in healing.

Rabbit Rabbit.

Here's to Round 2.

Get Up, Stay In, & Get Some

Reaction to a new day/ sleep being over/ waking from that dream where Lindsey Lohan is my Life Coach again, can hit me in two ways. I either bask in the beautiful morning sunshine, or roll myself out of bed with a profound hatred for daylight. Luckily, this morning came with exciting work and I was able to wake happily.

My mornings are usually happy, though. I climb out from whatever cramped position my dog puts me in, with newly-hatched bird hair and the need for a bathroom. Most mornings for people living with Crohn's start this way. Our eyes are finally open, but our guts have been working overtime all night. This is no cause for panic for me, as most people ever staying in my home are kind enough to haul ass when I need them to finish up in front of the mirror. 

Today, I'd like to talk about urgency. Yeah, there was just a paragraph about rushing to a toilet, but what I mean to describe is the feeling that life hands you just as you may think that your starting to slack on what's important. I am one of the countless jerks who puts things off, but mostly because situations that call for responsibility can be almost terrifying, not because I don't have the want or need for progress and grown-up ish to do. I don't blow off all adult thought. Even though every single time I say the word "progress", I sing in my head the song from Nacho Libre that plays during a scene where Ignacio and Esteban shop with their wrestling winnings for the first time. Remember it? Just me?

Maybe that's because people with chronic disease are stunted every time they're knocked on their asses. It's comfy to revert to thoughts that require little effort, or moods in which a chat with a loved one can be helpful in pulling me back to the real world.

[You are a real person, even if you feel you're just watching the rest of them from your window]

In more than a few instances, it's fantastic to get a re-do. I won't even pretend to think otherwise. But, in a lot of cases, I find myself lost just talking to friends that I've known for years. Being cooped up for a long time can really screw with your head. The best thing... okay, after all that dancing around your apartment, the best thing to do is give yourself a project.

Even if you think they'd be super duper teeny weenie to anyone else, projects that you create for yourself can actually save your sanity. I know I've been preaching this for some time now, but it's so true that I even forget, stumble upon the idea all over again, and become inspired just as I had the last damn time I started thinking this way. You know what? Time after time, I am proved right. 

Last weekend, I made bird feeders. That's right. Peanut butter smeared on a spent toilet paper roll, covered in bird seed.

To some of you, it may seem like a ridiculous thing to do. In which case, piss off. To others, it can be a way to give back to our fuzzy, feathered yard- dwellers. And it's something to feel awesome about, because believe it or not, you're putting yourself out there for another living thing [even if he is a little dude who can't tell you if he even likes the seed blend you've given him].

The bottom line is that you can only go at your own pace to feel truly happy. Don't worry too much about what you should be doing, and pay attention to what you are doing. Take your time. You'll be zipping all over the place, wishing you had the time to sit on your bum and talk to birds before you know it.

I promise..

Mood Poisoning

Cold, crummy weather makes me absolutely miserable. During the recent storms that blasted through New England, I think I cried more times within their few-day span than I had collectively in the last few months. Hurricanes don't scare native Floridians, but I was alone for the duration of Sandy- and that hurricane brought snow. Cosmo started freaking out before the wind started blowing, and his strange behavior (panting, whining, relentlessly licking his paws) made me nervous that if we really needed help, we might not be able to find it if people in Cambridge and Somerville were seriously hurt by the storm. 

Aside from the weather, I'm discovering that seasonal depression is a serious pain in the wobbly parts. I've read about large numbers of people with Crohn's that struggle with anxiety and depression without living in darkness in winter months. I've dealt with my share of mood swings during my recent flare, and just when I think there couldn't be anything else to knock me on my ass into a snowy, slush trap, it seems there is always more. Unfortunately, the list of tragic roles of a Crohn's patient doesn't stop at sick person. 

I was pretty damn pleased with my Halloween costume this year, but I do have a trunk full of other faces. Some are fun to wear, they make me feel good. But the others, they're the ugly kind that make you pee a little when you glimpse one on a haunted hay ride.

We've got a serious responsibility to keep whatever ails us in check, right? Research and  experimentation in pain and symptom management, too. There's also sticking up for one's self in trying social situations. Relationship maintenance is a big job, and you can go ahead and dump regular, 'normal' activity in there -if you can swing it. Sacrifice is a word that the sick know too well.  I've lost many people in my life because watching someone suffer so much isn't something that many people can stomach. It's almost as if the Universe had given me a buzzer that went off when the people I let in just shouldn't have been around. They left, and I moved on- without resentment or anger, because I realize that these situations aren't easy for everyone. 

Being tested in huge ways makes for an incredible spirit. I don't hold grudges or carry frustration about being misunderstood around with me too much these days. I'll admit, for a while I thought that keeping the hurt close would feel better eventually, somehow. I was so, so wrong. That mask was uncomfy, super hot, and smelled like my mouth.

When you don't put yourself out there, you can't complain when you hear things about people's uninformed shit talking, or that you've been totally mocked in public about not having been able to work for the last couple of years. How will anyone know how much you've planned for yourself in the time you were on your ass? Or that standing for too long could result in two down days, or a serious (and even more embarrassing) accident. Though since I got my poop card in the mail, I worry a little less about that last one.

So right off the bat, sick people are care givers and students, plan-breakers and fact checkers, objects of ridicule, and sufferers of lack of stimulation. We are strength when others need it, and even more when we really need it ourselves. We know how to let go, and mourn accordingly. We can make moments what we need them to be, and adapt in emergency situations. There used to be times when I wished for a normal life. When I hoped to just go back to the way things were before I got sick.

The truth is, having Crohn's Disease has made me a better person. I guess in some ways, it even saved my soul. I learned things that most people will never understand. I found strength within myself, and chose to rise above what I'd never have thought to in the past. I know what it feels like to love myself, and the body I've been given. 

For the first time in a long time, I'm seeing what I look like without any masks. 

And I could really get used to it.

Be The First To Laugh

When you're having one of those heinous weeks, and think things couldn't possibly make you feel worse, you should always remember that they have the potential to turn completely around. I've seen this phenomenon many times in my life. I'm not sure if the universe is doing me a solid by helping scoot me along and throwing me some good when I feel like garbage, but I'll certainly take it.

I wrote my last post before I was paid fair value for some really fun illo work, had just found an old letter from my father, and discovered life with a new job that I may already be in love with.

Every time I get super low, I try to remember the U-Turn Phenomenon [or, UTP]. When I'm bumming, I never seem to recall that in every other bad and uncomfy time, I've seen it all turn around. The same wonderful phenom likely rears it's head when you're least expecting it, too. Feeling down, well, it sucks. And when you're in a depressed mood, the last thing you want to hear is some idiot on a rant about how 'it'll be okay'. But shut up, alright? I'm about to drop some insight.

I have friends who are still sick with Crohn's. It never goes away, but when we're in remission is when we totally forget everything that we had just powered through. And who could blame us? I don't want to dwell on how embarrassing it was to be an adult and experience regular accidents, or recall painful and [again] embarrassing procedures. Here's the thing though- when those embarrassing things happened, who do you think was the first person to laugh? ME. If you beat everybody else to the punch by giggling about some crap [ha] that you can't help anyway, you'll be surprised at how much you can actually change the situation. You avoid looking bad by shedding light on the poop in a way that says, 'Hey, I'm sick. And here's how I'm going to handle it', rather than, 'Hey, I'm sick. Feel bad for me, because I'm too wrapped up in how sad I've become to look at this with any sort of positive thinking'. 

Here's my point, and you don't have to know illness to understand it. When your life shits it's pants, shimmy out of those pants and put on some sweats. It's an excuse to wear sweats, and NO ONE will judge you for putting on something comfy after dealing with what was just super unpleasant. You might actually get a few pats on the back. The only thing you've got to promise me is that you'll take a look at the mess at your feet, and choose to skip over it after making a joke -without crying- and wait for the UTP.

Don't cry over poop-filled pants. 

Ass Chappage

What chaps your ass? I don't really have much ass, and that ticks me off. I've got a bike though, so a small one is growing.

When frustration sets in, it's tough to keep telling yourself to calm down. To remind yourself that if you don't take a breather in an uncomfy situation, you'll look like an idiot. Not to mention, all of that negative energy can actually hurt you. There are ways to bring down the boil, and I'm on a mission to find what will help in even the nastiest of emotional kitchen fires.

I started to write down the things that bothered me. What I found was that when I read over those notes again later, I would start to back my bitchy self up. I would literally agree with almost everything that my attitude-spewing self had been thinking when she shittily jotted down what made her upset. I made justifications for acting like a dick, and that's just not cool. So, I brainstormed a bit more, and discovered another way to combat the Cold-Ass-Bitchies.

What your ungrateful caboose will need: 

BBQ Skewers- as many as you feel like scoring to cut in half. Breaking them will result in splinters, and more ass-chapping.

Colorful scraps of paper- I have oodles, and you only need small strips, so you can take them from just about anything that you're not using.

A fun pen- one you love, that doodling feels goood with.

A small jar or cup- to place once-skewers, now Ass Chap Flags in.

Here's what to do:

This is incredibly easy- and feels awesome, so hush up about working for it.

1. Write things that you love on the scraps of paper. 

These could be things that make you happy about yourself, or just things that make you smile. Ex: Puppies.

Three of my Ass Chap Flags say puppies. Please, even Super Shredder smiles at puppies.

2. Dab some Elmer's on the wordless side of your strip of paper, and fold it around the end of your skewer. It should look like a flag, with your message on the outside.

3. Put said flag in jar. 

4. Repeat as many times as you can without wanting to scream.

Now you have a cool thing to go to when you're feeling down on yourself. Or about anything else. Like not being able to go out and get a puppy. 
STEVEN.

It's Okay Not To Be Okay

To Whom It May Concern:


It's come to my attention that I am unbearably, and undeniably, unhappy. There have been few things lately that make me feel as though I have something to be proud of myself for. After spending so much time wondering what things would be like if I'd ever come out of so many terrifying Crohn's flare moments, it's almost gotten old for me to try for it.  Pieces of me sort of don't even care anymore. Small things that made me so happy seem so difficult to do. Objects are heavy. My body doesn't work like it used to. People are at such faster paces than I am. I don't speak when I'd like to. I resent anyone and everyone for what their abilities are that mine don't- and won't- hold a candle to. I think that I've actually started to hate things. 


I'm writing about this because I should. Because when you're this down, but you still have hundreds of reasons to be happy, you should let your feelings out in words that will prove to benefit you when you decide to read them back to yourself. To say to that sad, weak you, 'So you started over and it was a hell of a lot harder than you thought it was going to be. What are you crying about? You're alive'. I've learned a great deal about myself by exercising this method of therapy. Though I still harbor ill feelings about a lot of people, things, and situations -most of which, do not deserve my shitty judgement. 

I know how hard building my life is going to be. I get small tastes of it everyday. There really is no greater struggle than a struggle within yourself. I'm incredibly angry about what's happened to me. I want to find someone to blame. I want to blame everyone. I'm finally ready for my body to start feeling better, but I forgot how much it used to do. I can't even ride a bike yet. It will take me, I don't know how long, to even get up a hill. I guess I know one thing- after all the peddling I'm about to do, the breeze at the top better feel fucking amazing.


Rant over.


Will someone come over with cookies now?

Flutter Moment

Though my outings are few and far between lately, due to crap weather and body aches [thank you, steroid withdrawal], I always feel inspired by the things I see when I finally start to explore outside of my apartment. Venturing out can be tough for those of us who have been shut-ins for an extended period of time. If the sun is shining and the birds are singing, being outside can be really fun, not to mention super healing.

This beauty was waiting for me as I left Harvard Station last week. 

I had been anxious all morning and decided that going outside, and even riding the train, might make me feel better. You know what? It worked. 

When I want to spend time with friends somewhere new, or just need to get myself to one of many appointments with doctors, sometimes I freeze up when deciding what to wear, what will happen, etc.. I start to get nervous that my clothes aren't fitting well enough because I'm still so little, that I'll be under prepared for weather conditions, that I'll run out of money and won't be able to make it home by train or bus, that I won't be able to find a bathroom if I need one ... I psych myself into staying inside. I've done it at least 4 times in the last week. It's a terrible feeling. I just have to keep reminding myself that pushing back into social situations will be a good thing, a healing thing. Not some terrifying experience that will leave me scarred. I have awesome pals waiting for me on the other side- and even if I didn't, I'd still benefit from clumsily heaving myself over that barrier. 

You can do it, too. Even if you haven't been sick, we all tend to alienate ourselves from friends from time to time. You're probably a little more graceful in your hurdling, probably don't walk into book stores with hummus on your face because you scarfed your rice cake outside so no one will have seen you. 

Funks, right? Ick. Who needs 'em?

What It Means...

...To Be Sick.

Having a serious Health issue means having to know the difference between fun, and hurting yourself.  Too much energy used one day could predict the next to be fairly uneventful.

It means picking and choosing from equally beautiful days, just which ones you'll be allowed to enjoy.  Sometimes going outside is hard, especially when you're legs don't work as they once had.

It means repeating yourself, explaining what your disease is over and over, because most people don't know what it's like to have one.  Don't lose your patience with them, but HELP them to understand.  You may find that with a little time, they'll actually grasp some of it.

Being sick means missing, and even losing, friends.

Out of sight, out of mind, right?  You'll get those surprised, "How are you?"s that you hate, because you know that deep down, they're thankful that they're okay and most of the time won't actually want to hear your entire story.  But, and know that these are my most honest words, the truest friends will have your back for as long as you carry your plight, and even longer.  They'll ask questions, and wait for you to have the energy to explain the answers, even if you think you can't.

It means learning about your illness, and other illnesses.  When you've got so much down time, reading up on what's going on with your body can be scary-- but it's smart.  I learned quite a bit with my good pal google during my roughest times, and saved a few trips to the hospital by being able to calm myself down with explanations of the complications that came along with my disease.  [Just make me, and yourself, a promise... and never use google images.]  We're out to learn here, not give ourselves hives over what horrible conditions others have had and in turn, think that is happening to us.

-- I have to interrupt myself and add here that this year, I am inspired by a lovely group of creative and interesting people.  They do amazing things everyday!  [Even if one of them is my upstairs neighbor, and her contribution is singing at the top of her lungs to music that I can't even make out, but I know that I love.]  So... for that, I thank you all. --

It means learning trust.  When you're forced to rely on others, and your parents can't be around, being sick makes it absolutely imperative that you surround yourself with those who will love you as unconditionally as it takes to help you wipe your ass when your hands are swollen into fists.  Thanks, arthritis.  This process can be pretty painful.  Heed my warning, be careful who you let too close.  

It means learning you.

Your strengths, weaknesses, and a whole lot of thought processes you'd never imagined you'd even notice.  This is probably the scariest part.  I promise that it will be the most rewarding.  Ongoing and sometimes exhausting, with the highs and lows of the Grand Canyon, but ultimately- very rewarding.

Being sick means putting aside the things you love, opportunities to build your future, and sometimes even having a love life.  You've got to put your 'now' self first.  Now.  Trust me.  If that boy doesn't understand that you've gotta be in bed by 10:00 on a Saturday because you won't have the spoons to wake up Sunday morning and get your laundry finished before this work week, ditch him.  Wait, wait... what's that?  He's that cute?  I don't care.  There are plenty of other beautiful-spirited gentlemen out there who really DO give a hoot about you, and your sick little body.

It means learning that we are given second, third, even fourth chances to revisit our once-possible opportunities.  All that jazz I just wrote about giving up the plans you had made?  For one reason or another, they weren't meant to happen for you just then.  And believe me, when they come around again- and they will -they feel even GREATER.

Being sick.  Sick.  I haven't even begun to sum up what it means to be sick, because for so many people, it's entirely different.  I do know, that despite the pain that you're in, no matter how lonely you feel, and whether or not you're able to get up today, you're amazing.  You're loved.  You're the only you.  And it's your job to show this World your fantastic journey, because even if you reach one of hundreds, you've reached that one.  Maybe he or she hasn't had a go-round on this bullshit carnival ride, but you can be the loving and able hands to buckle the safety harness so that they know a little more about how to keep their eyes on one spot as they spin.

I keep my eyes on my loved ones.  My dog.  My going back to school.  Going back to work.  I choose to make my 'sick' what I want to make it.

I have the highest hopes for myself. 

And for you.

Make this year yours.