You may have noticed there haven’t been too many articles promoting my writing, interviews, and other creative projects. Sadly, I think the illness that’s kept me inside has robbed me of a good deal of inspiration. There are so many blank pages staring back at me. :(

Fortunately, I think I went and broke the cycle by doing a guest blog spot on the lovely Mysti Parker’s blog, where she hosted a writing challenge that featured different authors and bloggers doing personal essays on every letter, A-Z. I’ve been fortunate to cross Mysti’s path a few times, as she is not only an accomplished author I met via Goodreads, but a mentor over at Writer’s Village University. I even won a little contest on her blog last year, writing on a flash fiction prompt. She has a wonderful community of friends and writers out there, and I highly recommend checking her out. :)

My letter was “Y”, and I chose to write an essay on youth, and growing older. It is an odd subject for someone my age to tackle, I know. Such reflections are usually done by writers in their 50′s and 60′s. I thought it might be interesting to approach the idea of lost youth from the perspective of someone who is suddenly what the world would consider “an adult”, and doesn’t always feel equipped to handle such a responsibility.

I’d love if you’d read the essay here!

Please show us both some love with likes, comments, sharing, and all that jazz….:)

And, as a bonus, I’m sharing a poem I wrote almost as a joke a few months ago. It’s “Ode To The Trolls”, and designed to teach children (or people of any age) to deal with bullying and being made to feel “less than”. It is both real and satirical (you know, rather like Stephen Colbert), so it’s best read to a Dr. Seuss sing-song rhythm, either aloud or in your head. Enjoy! ;)

“Ode To The Trolls”

“There’s a problem today
That makes everyone mad
Angry and quiet,
Disgusted and sad.
You’ll notice one day
People don’t often agree
And being disrespectful to others
Is something you’ll see.
I don’t recommend it,
You shouldn’t really try it,
But you don’t have to listen
And you don’t have to keep quiet.
You may be a child, an adult
Or a teen
But at some point and some time
You’ll meet someone who’s mean.
She may think she’s funny,
He may be aggressive
But bullies are awful
Really, truly offensive.
On the playground, at work,
Or an Internet troll,
Bullies don’t fit
One particular role.
When one makes the decision
To come after you
You’ll wonder what you did wrong
And what you should do.
The truth is it’s nothing,
You’re perfectly fine
(Though we all do embarrassing things
From time to time.)
And though it may hurt you,
This moment will pass.
Just handle yourself with grace
And with class.
When it comes to people,
It’s easy to see
There is really and truly
Not a right way to be.
When people are angry
And cause a commotion
It’s them and not you
That create this emotion.
People aren’t always good
And they aren’t always bad,
But in the heart of a bully
You’ll often see someone sad.
There isn’t one way to be
That is never a crime;
We’re all going to get picked on
From time to time.
Maybe you’re really smart
Super-nice, extra-pretty
Or always willing to help
Others out in a hurry.
Maybe you have special talents
Are the head of your class,
Have lots of friends,
Or can kick a ball down the grass.
Maybe you’re that one person
That others can find
When they’re sad or they’re scared
Because you’re humble and kind.
Maybe you don’t even know who you are,
What is real, what is true,
But lurking inside
Is something special, creative, and new.
And when people can see it
They become really jealous,
Trying to erase all the great,
Wonderful things people tell us.
Maybe you’re black, and
Maybe you’re white;
Maybe you’re Muslim
Or Israelite.
Maybe you’ve made mistakes
Or you’ve spoken too loud,
Or you’ve done something silly
In front of a crowd.
You might feel too short,
Or you might feel too tall;
Or you might feel like no one
Ever sees you at all.
Maybe your hair is curly
Or red like a fire,
Or you’re bad at sports
But great in the choir.
You might be a guy
Who knows how to dance;
You might be a tomboy
Who always wears pants.
Maybe you’re Asian
And still bad at math,
Or you live with two moms,
Or you live with two dads.
Whoever you are, there’s a stereotype
Of who you should be
And what you should like.
But girls can play football
And boys can like pink.
You must learn to ignore
Those who speak and don’t think.
People may gossip or call you names
Bullies play mischievous,
Devious games.
It’s not your fault,
It’s not your decision.
You don’t deserve all the
Scorn and derision.
You may think it’s you
That you’re stupid, or weird
When the truth is we all have
Our doubts and our fears.
There isn’t one person,
No matter how strong
Who doesn’t look in the mirror
And find something wrong.
When people are bullies,
When people are mean,
They don’t like themselves
And so, make a scene.
People are perfect
In all shapes and all sizes
From all races and countries
Friends are remarkable prizes.
They make your life better,
They make it seem fair
That you are who you are,
That you are here and not there.
But no matter how special you are
Helpful, modest or nice,
Someone will say something mean
Without thinking twice.
Words can hurt deeply,
But whatever they say
Nobody else has the power
To ruin your day.
Whatever happens, and
Whatever you do
You must never, not ever
Once stop being you.
Maybe you’re skinny,
And maybe you’re fat;
Maybe you like dogs
Better than cats.
Being yourself is
To live unrepentant
And having opinions
Is what makes you authentic.
But whatever you say,
And whatever is real
Leads people to judge
The way that you feel.
They’ll tell you you’re wrong
That you should keep quiet
And you may be utterly
Tempted to try it.
When you are yourself,
You’re much criticised;
Supported and loved,
But also despised.
I’ve lived and I’ve learned,
And this much is true:
“Just be yourself”
Isn’t easy to do.
Deep down you must know
There’s no reason for shame,
But you will hear judgment
And you will hear blame.
Whoever you are
And whatever you do,
Somebody, somewhere,
Doesn’t like you.
So, why should you care?
Really, what does it matter?
There will always be people
Who will make your heart shatter.
You take a deep breath,
You count to ten-
Then you put the pieces together
All over again.
Kindness and love
Are still everywhere
But the courage to share them
With others is rare.
People today, they
All want to fit in,
As if being different
Is the world’s biggest sin.
Different is pretty,
Expressive, unique;
It may make someone’s heart
Skip a beat.
People may tell you
Your thinking is wrong,
But they are narrow-minded and scared
Because you are strong.
You don’t have to tell me,
I really do understand
Fitting in with the world
Should be part of the plan.
Going along with the crowd
Makes you feel protected,
Accepted and liked
Instead of rejected.
But those who are different
Help the world change;
Some of the best people ever
Were remarkably strange!
You might be an actor, inventor,
Or poet
You might fight injustice
Love others, and show it.
You might make new music,
Find a cure for disease,
Travel the world,
Rescue kittens from trees.
You might be a pilot,
The first girl aboard submarines,
Or help save the world
By keeping it green.
Or, maybe, one day,
You’ll be a mom or a dad
And deep in your heart
You’ll be awfully glad
That although people hurt you
Or mocked you with glee
You had the courage to say
“I am me!”
Because what makes you so different
Is what makes this all true:
There’s nobody better
Than irreplaceable you. ”

~ February 28th, 2014

“I want enough time to be in love with everything. And I cry because everything is so beautiful and so short.”—- Marina Keegan

I’ve been feeling a little down today. There is too much alone time and not enough fun, I think. I miss people and adventures. I really do, no matter how tiring, messy, or filled with complications they tend to be. Perhaps some part of me actually likes the chaos, because once in a while, chaos leads to something that makes you magnificently happy. Other times, it leads you to feeling stressed out and screwed, which causes adrenaline to pop up for a reason. In no way do you feel blase, or just “there” for days on end. This is something I’ve never gotten used to. I’ve been told since my teenage years that if nothing bad happens, that is cause to feel happy in life. It has never been for me. I’ve been told a majority of life isn’t interesting; we spend our energy on school, jobs, and every once in a while, have meaningful connections with others, go on a social outing, travel, or have an unexpected adventure come our way. I’ve never been content with that. I don’t feel that way. I don’t feel happy because life isn’t bad, I feel restless because it isn’t interesting, and sad because it isn’t magnificent—and couldn’t it be? “Just being OK” and “Every day being kind of the same” hasn’t been something I understand, and even in my younger years and the best of health, too much exposure to this made me feel low in spirits.

Of course, since I got sicker, there are days that are terrible, where I cry and just want to be alive, no matter what. There are days when I feel happy, energised, and mostly like my old self again. But honestly, most days are just…the same. I often don’t see other humans for days at a time, and most of my relationships are maintained through writing and electronic devices. Work occurs in the same place as fun, and fun occurs in the same place as sleep. I don’t often wake up full of passion or excitement for a person or thing, something that’s always been very natural to me. I get very excited about the things I am currently interested in, even if it may be a passing infatuation. I tend to burn myself out on both interests and people because I am so consumed by them for a period of time, I inevitably get bored, and want to recapture that “I’m so enamoured with this thing, I can’t wait to get up!” feeling.

I should be appreciative of all the days that are peaceful and “just okay”, but I am not. After all, I have it easier than most, in a lot of ways. I have a good support system of family and friends. I don’t have to get up and go to work every day. I have the luxury of spending my time being creative if I choose, or exploring new things, or doing all the things people want to do when they have peace and quiet.

But I am so underwhelmed and uninspired by peace and quiet, I am not thankful, but sad. I want nothing more than to be a part of the world again. Until you’ve been locked inside for four months and can’t do all the things your friends are doing, you don’t know how much it means when someone comes to visit you. A few months ago, I was this girl who loved fashion and costumes and did too much online shopping. Now, I think, “Well, who is going to see me, and when will I ever be able to get dressed up and look pretty (or what passes for pretty, if you’re me. :P) again?” I used to look at the calendar in terms of things I just couldn’t wait for. Now, the hours tick by. All I really want is human interaction; laughter, dancing, friendship, romance, complicated emotions and petty gossip, playing trivia, shopping, going out to lunch or grabbing a cocktail, all those things PEOPLE DO. I don’t want life to continue to go on and forget about me.

I appreciate the opportunity to have been able to live in a bubble and get more in touch with my inner self and comfortable with being alone, but it hasn’t made me more creative or confident. It just makes me miss being part of the big world out there, and meeting interesting new people, and celebrating life. I miss seeing everyone, and not having the anxiety of illness always be the focus of conversation. I never want to have to say, “I can’t do this thing all you guys are doing, because I am not strong enough” again. I never want the most interesting thing about me to be what’s wrong with me, ever again. And if I do not recover from this illness, being defined by what’s wrong with me is not how I want to be remembered. I have learned to have the utmost respect for people who have had to deal with illness, injury, or disability. It’s one thing when what holds you back is in your mind—that’s hard enough. But when what holds you back is your physical being, it changes you. I know this is supposed to make me a stronger and better human being, since I am not dead, but I don’t feel anything but lonely.

For this to happen to a person who thrives on experience, social relationships, and interaction with the world is as disabling as an injury to a person whose life and identity is focused on athletics. There’s always the hope you may heal, but also the knowledge that even if you do, you may never be quite the same, and the world isn’t going to stop to mourn your absence. You have to find new dreams.

Right now, every dream I have requires me to be a marginally healthy, non-agoraphobic person. I feel the amount of time I spend on my computer and watching television starting to drain me, physically and mentally, but I keep looking for interaction, anywhere. Even my mother, who is in a nursing home, has company on a daily basis. However, being a little like me, she is also so depressed that she goes to sleep at 8 PM. She doesn’t know what else to do with her life when her body and her mind have been so limited by illness.

All this being said, it’s probably not the best state of mind for me to start reading Marina Keegan’s “The Opposite Of Loneliness”, or maybe it is. For those who haven’t heard of her, Marina was a Yale magna cum laude graduate who was already publishing her work and landed a job at The New Yorker. She was a good writer; many referred to her as a prodigy. She had every advantage one might think of; fairly well-to-do parents, a good education, a loving boyfriend, plenty of friends, and a brilliant mind. Yet, most of her poems and essays are about the alienation of Generation Y, the struggle for perfection at the cost of identity, the relinquishing of passion in hopes of success, without any guarantee, and even then, the choice not paying off. They are, in a way, very much about loneliness—but the comfort in knowing that everyone around you is experiencing the exact same sort of loneliness, which turns out to be not quite so lonely after all.

Marina writes a great deal about death in her work; she makes statements that will send chills down your spine about life, death, mortality, and the future. It’s as if she knew, on some fundamental level, that she should be concerned with death and leaving behind a legacy in a way most people are not for another 22 years.

Marina Keegan died in a car crash 5 days after her graduation. My heart breaks for her, because it is almost as if she always knew there would not be enough time. One of her essays focuses on being remembered, and how her “greatest fear is that I will never end up doing anything, not really”. This is her legacy, this is a tangible memento of something she did—although it’s nothing compared to the legacy people leave behind in the people they love, the hearts they touch, the things that are better for a person having been on the planet.

This is her legacy, although it’s not why you should read it. Some of her essays went viral, others are being posthumously published, but even when she was alive and well, she was being hailed as an accomplished writer. Her talent does not lie in an early, tragic, and eerily foreshadowed death, but in raw talent with a lot of potential. She could have been a lot of things, and she feared becoming nothing.

She did become someone and accomplish something, and this is her legacy. It gives me great comfort to know she will be remembered. After all, it’s what I want for myself, although I will never have 1.4 million people mourning my death. I should like to have proven Marina’s fear, and my own, to be without merit; we all become something, we all become someone worthy of memory.

Perhaps, if we try hard enough, we even inspire, long after we’re gone. This young woman, someone over a decade younger and tremendously more gifted than myself, inspired me and touched me in a way that’s difficult to explain. I had a similar reaction when Brittany Murphy passed away, an Irish-Italian girl with black eyes and red hair and pale skin who lived in New Jersey, and fell into the trap of living a life in which one can never possibly be good enough. I didn’t know Brittany Murphy, but I knew she was my age, and underneath the plasticised, anorexic exterior, I saw someone who was a lot like me…and I genuinely mourned her passing. Perhaps it is natural to be touched by the passing of those who are young, those who remind us of who we are, who we were, and who we might have been.

Not everyone in the world will feel the same connection to “The Opposite Of Loneliness” that I did, reading words that could have so easily been many of my own thoughts and words and fears and doubts. I am often afraid that, like this young woman, I won’t be around as long as I would want to be, and I may never become anything worth remembering.

And, for that alone, it is important for me to remember her–this perceptive girl with a quirky sense of humour and unique insight into others that made her special. She is someone I would have liked to have known, and I would have liked for the world to have known.

You should not read and applaud someone’s creative work simply because it is his or her legacy. But you should allow yourself to be touched by it, identify with it, and wonder how you yourself may one day be remembered by the world.

Thank you, Marina Keegan, for leaving behind the gift of yourself. I am sorry you didn’t have enough time to fall in love with everything. It’s no consolation, but none of us ever do.

Best-selling author J.R Moehringer, best known for his own semi-autobiographical novel The Tender Bar writes this heart-breaking final tribute in his review of her work: “I also might have told Marina that we do have a word for the opposite of loneliness. It’s called reading. Again, I’ll have to tell her readers. This book reminds us: as long as there are books, we’re never completely alone. Open it anywhere and Marina’s voice leaps off the page, uncommonly honest, forever present. With this lovely book always at hand, we and Marina will never be completely apart.”

I can’t think of a better legacy, really.

“The Opposite Of Loneliness” is currently available through Amazon.. It is not only worth reading, it is worth being a permanent fixture in your library.

“I want a girl that’s full of life and enthusiasm and optimism and creativity and assumed profundity. Who I do not have to brag to. Who I can engage in a dialogue. I want honesty, more than anything, “— Marina Keegan, “Cold Pastoral”

April is National Poetry Month, and there was this challenge associated with it to see if you might be able to finish 30 poems in 30 days. It seemed like a cool challenge, and one I was excited about participating in, but it’s already April 6th and I haven’t written a single word. Even blogging has been somewhat of a challenge. I don’t know what to share, often.

The creative block I have been suffering, the thing that tells me I suck and don’t have any original ideas and there’s absolutely no point spending hours writing stuff nobody is ever going to read, just isn’t going away. In an ideal universe, I’d be using a lot of the time I have not being able to go out and interact with society to be creative in a brilliant-but-disturbed-Virginia-Woolf kind of way. However, it turns out, the same things that make me feel angsty as a person create angst as a writer, and so blank pages just stare back at me.

I, of course, conquered this in the best way possible: by watching hours of television. This week was also Comcast’s “Watchathon”, the one week where they give you access to all the channels you want but don’t get (even though you also get 100 channels you never use, and could watch at any given time.), and therefore, you can catch up on a series that you’d normally miss out on.

I watched the mini-series (which was 10 hour-long episodes, almost as long as a regular American dramatic series) adaptation of Phillipa Gregory’s “The White Queen”, which I highly enjoyed. I like both historical fiction and period drama, although too much romance and sentimentality is not a selling point for me, and today’s authors tend to go too much in that direction. Phillipa Gregory does her research, but she also tells a compelling story; it’s really a compelling soap opera that is so much better, because at some point, IT ACTUALLY HAPPENED. If you are one of the 5 people on the planet who has Starz, or you can find the series elsewhere, I highly recommend watching it.

The Guy I Am Currently Dating was even more ambitious, and managed to catch up on “Game Of Thrones”, which I refuse to watch. It’s really a shame; despite the fact that it is the type of story I’d typically love, I can’t watch the level of violence and emotional abuse on that show without crying. (And I watched both “Sopranos” and “Oz”, so violence is not necessarily a deal-breaker in my show choices.) There’s something about the way the show is done that makes the violence and killing and sadness so much more affecting than other shows, and it didn’t take long to realise the show would give me nightmares. I do still have the book on my Kindle, which I haven’t read yet.

I suppose it was either last year or the year before, but I was really profoundly affected when I read about the death of 22-year old Marina Keegan, right after her college graduation from Yale. I didn’t know her; I’m about 10 years too old for her to have been closely connected to anyone in my circle, but I saw her story and her writing through a friend of a friend at Yale. It was one of those stories that simply stayed with me, and reminded me of the cruelty that accompanies the randomness and impermanence of life. We can all lose everything, so quickly, and lives change in the blink of an eye.

She was a talented writer, and the piece she wrote for classmates before their impending graduation was heartbreaking, because it was all about everything she and her friends might grow up to be. She never had the opportunity. I am really happy that her writings are being collected and published, because although I never knew her, it felt like she left an absence in the world. Her book, The Opposite Of Loneliness is being published on April 8th through Amazon, so if anyone would like to gift me a copy, I’d love that. ;) The New Yorker, where she interned after graduation, has honoured her by publishing one of her pieces, a short story more than worth reading.. I suppose her story resonates with me, because it is a reminder that death does not discriminate, and every day, life says “What are you doing that’s worth leaving behind?”

I’m not a hyper-competitive person. I didn’t go to an Ivy League school, not because I didn’t get in (I was accepted at both Penn and Columbia), but because I didn’t feel the freedom to be me. I felt like it was yet another step on being rewarded for properly pedaling the hamster wheel, a path that never ends until you have the right resume, the right internship, the right job, the right awards, the right house, the right spouse, the right kids and/or dogs, the right air of respectability, the right legacy, the right funeral. At no point on the wheel is there too much room for self-expression or for saying “I don’t care about any of that. I am not a resume. I am not an image. I need you to see me“. It is a battle I am still fighting; I’m not equipped with the right anything. I have more than once fallen for someone who could never fall for me back, not because of lack of feeling, but because I am “not the sensible choice”. I am not a stop along the maze-hampster-wheel path, and for those who are, noticing me may be ultimately destructive.

But, like those countless rule-following, over-achieving friends I admire and feel a great sadness for simultaneously, I spend a lot of time wondering what I will have done with my life that’s worth leaving behind. It is poignant to read Marina Keegan’s stories and poems, because she examined that a lot; like many 20-somethings, she had a lot of questions about the future and so few answers, and wasn’t afraid to discuss how utterly terrifying that is.

I wish she were still around, so I might tell her, “In 10 years, you still won’t know. All the questions you’ve answered will be replaced with new ones”. It makes me terribly sad that such a bright light, such a curious and intuitive mind was taken from the world so quickly. It makes me more determined than ever to find something worth leaving behind. I know I will never change the world, but in some small way, I’d like to be remembered by someone for the tiny little mark I left behind. Perhaps if I’d done things “just like everyone else”, if I’d “lived up to potential”, I’d be a stellar resume with a cute studio apartment by now.

I suspect I’d be miserable, staring at a lack of authenticity and freedom to exist in an unrestrained fashion, both from myself and everyone else. I’d be lying, though, if I didn’t admit to wondering.

It occurs to me pretty frequently that I may have less time on this planet than most of the people I know, and so the pressure to live, to leave a mark, to be worthwhile, it is something that feels greater. I am terrified of running out of time. I’m terrified of all the chances I’ve never taken, all the alternate ways things still might work out, but I may not be around to see. I’m terrified that after a fairly colourful life, I’m still lacking in self-confidence and inhibited. I still can’t say “I love you”, or “Please don’t leave, because I’d miss you too much”, or even “Why don’t you think I’m worth getting to know?” I’m terrified that I’ll never be the strong, unique, loving, accomplished person I’d like to be. I’m terrified of always being overlooked, as if there’s little special to note about me. The friends who define success in the level of accomplishment and attractiveness of their mate and the net worth that will result from a lifetime of hard work tend to make me feel invisible, despite the fact that they simply see the world differently than I do.

I sometimes wonder if *anyone* sees the world as I do, or I will keep losing people to the beguiling mistress that is conventionality. I wonder if I’m going to be in the world long enough for it to matter.

Last weekend, I finally did what I could to make myself social again, and I had a party. Most of the people I love most in Atlanta were able to show up, and I had a wonderful time. But what I noticed most acutely is how different life is as an extrovert. Being ill has given me a gift I never had before, the one of being calm and focused enough to get to know people on a one-on-one basis—to actually feel more inspired and content by a few days with one person, than by meeting 100 new people. It has taught me, perhaps, what the world looks like for introverts. I still love parties, and crowds, and dancing, and singing, and costumes, and martinis, and awesome clothes, and cities that don’t shut down. But the times that make an impression on my heart are increasingly the times I went out for drinks with a friend, and that turned into an adventure; the time I went to dinner with someone I liked but didn’t know that well, but talked until the place closed down and walked away with a really special friendship. I think, maybe, I’ve learned to be both fun and substantial…and it’s something I wish I could have taught my 25-year old self.

I’ve learned not to take anyone or anything for granted, and that if you want something, you have to take a chance. You can’t wait around for life to happen. You can’t wait around for someone to notice how fascinating you are. You can’t wait for people to come knocking at your door, asking to be your friend, because they rarely do. You can’t wait for someone else to create the next adventure you’ll remember.

Life is really short. If you want to watch every episode of Game Of Thrones, do it now. :P

Some days, I find myself stuck inside a very deep kind of depression, and I don’t see a way out.

This is a relatively new experience for me. In the past, every time life knocked me down, I would be worried and anxious and frightened, but I’d always pull through. Inside, I’d always have this little spark that told me I would defeat anything that tried to hold me back in life.

I don’t have that spark anymore. When people say, “Be thankful you have your health”, it may seem shallow and empty when you’ve lost a loved one, a treasured relationship, all your money, your home, been disgraced in public, gotten arrested, or any one of a series of catastrophic events that can hold you back from wanting to be part of the world. It’s not. When your health limits you to the extent that it starts taking away the things you value most, you see there’s little else that matters.

You will always make more money or find a new job. You can always move past personal problems. You may mourn the loss of a loved one or relationship for a long while, but you’ll find reason to smile again. You may be angry when your friend or co-worker or roommate or spouse betrays you, but you’ll eventually forgive.

However, when you have the spirit to do all these things, but your body simply keeps you from being a part of the world—you see and feel everything you’ve lost, everything you’re losing. When you don’t know what’s wrong, and doctors don’t know, and you’re shuffled around from one trial to the next, you don’t see very many bright spots. You feel sad because the future may bring something you’re not emotionally equipped to handle, and then you remember, it doesn’t matter, because there’s a good chance you may not be around. You look at what illness has done to your body, your mind, your heart, your attitude, your ability to love…and then an attack hits, and all you can think of is “All that matters is that I’m alive. Please, God, I’m not ready to die.”.

And this controls your life, and you can’t even ride in a car to see a doctor who may be able to help you…so you put yourself through hell just for the *hope* that you might get your life back, and are bitterly disappointed when there are no answers, just confusion; no help, no understanding, just a referral to another doctor. Sometimes, you think about harming yourself just enough to end up in the hospital, where they will do all the appropriate tests on you and maybe figure out what’s going on.

“Be thankful you have your health” is absolutely the best advice anyone can ever give you. When you don’t, nothing is ever the same. You are never the same.

In my heart, when I wake up in the morning, I sometimes feel like the person I used to be. I see the sun, and I am excited. I wish I were still living in one of my old apartments/condos, complete with pool, or on a busy street in NYC or London with plenty to do just a block or two away. I think of the friends and family who matter to me and live elsewhere, and how I’d love to see them, and plan to visit. I remember travel destinations, love affairs, unexpected adventures, and that I’m still young enough that my life has potential to be free-spirited and interesting. Then I get up, and start my day, and I remember: I am not that person anymore, and I may never be. It feels like someone ripping out the core of who I am, and it hurts. I should be depressed. I’m losing everything, but at the same time, the things I value the most: my free-spiritedness, my freedom, my ability to live while I still can.

My mind does not accept what is happening. It always thinks When I am well, I will go with my friends to karaoke. When I am well, I will spend a few weeks at the beach. When I am well, I will take more road trips. When I am well, I will make seeing the people who matter a priority, no matter where they live. When I am well, I will appreciate the small things. When I am well, I won’t choose watching a TV show over an adventure with a friend. When I am well, I will never stop traveling and experiencing and falling in love with love and people and life. When I am well, I will take chances again. When I am well, I will be courageous enough to express how I feel, because it will impact the future, and the fact that I have a future will matter. When I am well, I will appreciate the small things like having my nails and eyebrows done. When I am well, I won’t be scared of life, because I’ve already made it through the worst.

But, deep inside, a more logical voice reminds me it is too late. Planning for a future that doesn’t exist and looking forward to a happy, healthy person I can never be is almost masochistic.

In my dreams, I have adventures. I travel. I party with friends. I have odd love affairs. I see people I miss. I run across space and never feel dizzy or tired.Sometimes, I sing; I wake up, and I am in the middle of singing. In my dreams, life is interesting and I am free…and I am sometimes so disappointed to wake up.

It must be the same way that dogs dream about running, or people who can’t walk dream about having legs. I wish I could be strong enough to make the feeling of depression and hopelessness leave, because when my body starts to go crazy and I fear I’m going to die, all I can think of is that there are no limitations that make life not worth living. My desire to live is that strong. But other times, my desire to only live if I can do so on my terms is stronger, and I do not know which will win out.

I feel like I am losing some of the most important years of my life…but it is my body and not my spirit that is doing this to me. I almost wish it were the other way around.

Depression is horrible, but often easy to understand. Being a medical mystery is not. Deciding, “If nobody can cure me by this point in my life, suicide should be an option” is not irrational or cause to label someone emotionally unstable. It’s simply a desire not to suffer, not to be a lab rat for the rest of one’s life, not to watch life go by from the window or die alone, collapsed on the floor and terrified and begging for divine mercy.

I want to be in control of my life, and I am not. I want to think about the future as if I have one, and I can’t. I want the fact that I am loved to matter. I want to make plans. I can’t. There are people I want to write to, and I can’t, because everything I say sounds like goodbye—and there are some people to whom I simply could never say goodbye. Remembering that makes me temporarily strong again, as if strength of will and love and spirit should count for a lot. But then another attack happens, and I realise…it doesn’t.

If love and spirit and good wishes were all it took to keep someone on the planet, nobody would ever have to die.

And, me, I just want to travel through the world again, one last time.

I often like to play this game called, “If I Ever Get Better”, because one of the best reasons I have to not totally give up on everything and refuse to get out of bed in the morning is this persistent idea that one day, magically, things will get better. Maybe they won’t stay better, and it turns out I’ll have limited amount of “healthy and free” time in my life, but there are always things that make me think “I miss this. I want to do this. I can’t die without doing this thing again. It should not be allowed.”

Of course, the reality is, many of them cost money and being sick is an added financial burden on top of already not having much in the way of financial resources of stability. In all honesty, even if there’s a magic recovery pill for me somewhere, I’ll probably never end up doing many of the things on my list, for practical and financial reasons. But, it’s fun to dream that there’s a world in which I can do whatever I want, and celebrate being alive and healthy…because everything else, including money, seems so small and irrelevant compared to what’s been holding me back. It seems that if you are allowed to live and are allowed to be healthy enough to experience life, all those other little things should work themselves out.

1) Visit new, somewhat-local places I haven’t seen yet. One of the things that’s interesting about the Southeast is that there is a ton of quaint little towns and small cities worth spending time visiting. I find them, in general, far more charming and have far more fun than in cities like Atlanta, Dallas, and Jacksonville, which epitomise the annoying hell that is urban sprawl in the Southeast. Many years ago, I had a few boyfriends who were travel buffs, and liked to take weekend trips or short adventures exploring new places that didn’t require boarding an airplane. I enjoyed that very much, and The Guy I Am Currently Dating really shows no interest in getting in the car and traveling anywhere outside of Metro Atlanta unless he has a very specific reason. I feel like this part of myself has been kind of stifled; I don’t have anyone to travel with, my budget is too tight to allow travel, who will watch my dog, will The Guy I Am Currently Dating understand that sometimes I just want to get the hell out of Atlanta and do something NEW? There are so many excuses. But I’d like to visit Savannah again, and Athens (less than an hour from Atlanta), and Charleston. The best times in my life have been when I’ve been off having adventures, and it breaks my heart to think I might never be able to have that again. Nothing makes me happier than experience, and participating in the world, and I’ve been holding back because people in my life don’t share that same spirit and because I’m now grown-up and have these practical concerns. I wish I had chosen differently.

2)Wander around the city and take pictures. I like walking, and I like taking photos, and I don’t do enough of either anymore. Even before I became too unhealthy to leave the apartment, there were always excuses not to go do things. When I was first single in Atlanta, and didn’t have too much money or too much free time, I also didn’t really know anyone to spend time with on the weekends and hated being so cooped up. So, I became a wanderer, and I took myself on “artist’s dates” (a la Julia Cameron). One of my favourite things to do was to have lunch and a cocktail at Apres Diem, and then see a matinee of an artsy/indy/foreign movie that only I would like. I’d take my journal to Piedmont Park, my camera to Georgia Tech’s campus, and I’d find that everywhere I looked, there was a memory. It made me happy to be a part of the world. I stopped doing that long before I got sick, but because I moved to the suburbs and even getting to the city became a hassle. When I first moved to Atlanta, the very first thing I did was to ride the subway and get off at every stop, because I was curious. When I told my then-boyfriend and his roommates this, they looked at me like I was crazy. Apparently, that was dangerous and people didn’t do that. But, I once found an e-mail that same then-boyfriend wrote, where he said he admired me and my spirit of adventure. All the things he thought about doing, and over-thought, and then didn’t do, I just went and did because I wanted to. That ex and I haven’t been in touch for so many years, but I never forgot that although things didn’t go so well between us and he was very critical of me, that was a quality he admired. I imagine it would make him sad to know life has taught me not to be that way anymore. It makes *me* sad to know.

3)Sing, dance, and wear tutus I like doing those things. Another thing about being young is that you do all those things without thinking about how others are judging you or wondering if they are. Of course they are, and the truth is, people had as many mean and critical things to say about me and my personality and my differences back then. Half of the time, I didn’t know how mean the things were, or I might have let it destroy my confidence at a much earlier age. But, for whatever reason, I cared enough to be hurt but not enough to tone down who I was to please others. I LIKE singing at karaoke with my friends, even if you don’t like hearing me. I LIKE showing up at clubs and parties in tutus and bizarre costumes, even though I’m not one of those surgically-enhanced Barbie-doll types that wants to add photos to a modeling portfolio, and I’m too old to live in a world of make-believe. I WANT to grab my friends and go to a salsa dancing class/evening, even though I would find a way to injure myself and others in the process. I LIKE being larger than life, because it’s who I am and it makes me happy. Why should I stop because it doesn’t make someone else happy, and so that someone else has to make rude comments designed to remind me how imperfect I am? Are only perfect, beautiful, society-image-approved individuals allowed to put themselves out there?

4)Take an Alayna’s East Coast Tour. It’s long and it’s tedious and it involves a lot of travel, but I really enjoy the fact that every year, I can take two or three weeks out of my life and see all the people and places that are important to me. When I am unable to travel, I miss those people a great deal, and I find myself thinking of the crazy adventures I’ve had in Philly, NYC, and DC. I think of how I generally confound the people of Raleigh, Durham, and Charlotte, and how I learned to never spend time in Savannah without a valid ID. I think of how much I actually *like* going to the Jersey Shore in the summer, although everything about it is totally cheesy and way too family-friendly, because it reminds me of my childhood…or, some of the good parts. Every time I travel from Atlanta to NYC and back again, there is just adventure and experience, and some of my favourite people in the world. I can’t imagine not being able to do that again, because even when I think back on some of the crazy, hard, and negative experiences that I freaked out about at the time, most of them are kind of heartwarming and I’m glad they happened. Most. Not all. :)

5)Poker and trivia. Yes, I’m a geek, but I really like those things. They’re not terribly enjoyable when you don’t feel well, and I hate that since 2011, my illness has kept me from enjoying them and the people who share them with me the way that I should. I remember the days in 2005 and 2006 when I’d play trivia every Monday, and poker on Tuesday and Wednesday, and then socialise all weekend. For some reason, I lived on bar food, drank every day, but never got fat or sick. I didn’t watch TV very much during those years, and none of my dating/romantic relationships were very serious; I worked and hung out at the pool during the day, and went out at night. Eventually, I caused too much trouble for myself, but at the beginning, my life was largely filled with perfectly innocent fun. And, after I became largely a hermit for a few months in 2006 and wisely replaced people with TV, I looked forward to trivia day greatly. I haven’t been able to go in quite some time, because I can’t ride in a car; a friend is even having a poker night, which I’d be the first to attend, but I can’t travel. I do miss those things.

6)Keep life in perspective I like feeling safe and secure and at home sometimes, but there’s so much life out there waiting to be lived. There are so many times when I’ve let practical matters, other people, and insecurities keep me from living. There are so many times I let fear, self-doubt, and the knowledge of my own inadequacy taint my life experience. If being sick teaches you anything, it’s that most of the reason that you have not to do things don’t matter, and you need far less than you think you do to look and feel the way you’d like. In fact, sometimes, you actually feel better and freer when you have less things, less encumbrances, less choices. You are able, somehow, to feel more like yourself and more loved, because you’re less worried about all the baggage you’re carrying with you.

There are, of course, so many other things. I’d like to have a picnic in the park with a good friend, attend a crazy summertime party where I feel impossibly old, go to the theatre, the opera, the symphony. I’d like to drink overpriced cocktails at a speakeasy in a funny hat, see a movie in a movie theatre, go to a street fair, see a band play, do artistic and unusual things, eat dinner at food trucks, end up back in New Orleans, watch Shakespeare in the park, move back into a city, and just generally never say no to adventure. It seems fair that if the Universe gives me back my health, that it will change me a little bit, and remind me of the person I once used to be and the person I’d like to be…and find some way to blend them, and move past the person I am now, a person who is so often defined and limited by illness and fear and depression.

If I get better, I will appreciate life is finite and health is temporary, and I will remember there’s plenty of time to sleep and watch TV when I’m 80. I will remember that as much as I love the internet, and my phone, and my camera, there’s more to life than being uber-connected. There’s real experience, and being free and open to that makes you feel like the best version of yourself possible, in a way no electronic device can substitute.

“My life is a candle that burns at both ends, and before the night is out, so shall it be. But, oh, how it did burn brightly!”—Edna St. Vincent Millay

There is a point in your life where you become acutely aware that you are going to die.

Of course, we’re all going to die and nobody knows when. However, when you live with any sort of chronic illness–much less a bunch of chronic illnesses that doctors cannot understand or accurately diagnose, you realise that you will not be here quite as long as everyone else, even if you manage to be a strong, normal person and keep it together enough not to take all the anti-everything pills stashed in your house in an attempt to simply go to sleep and depart the world without pain or drama. Every day that you have one of those nights with a 7-hour issue that entails you feeling like you’re a walking heart attack, with half of your body numb, and shooting pains on one side of your head, and enough dizziness and panic to lead you to believe this is the end and it sucks, and enough adrenaline and lack of emotion that you can cut your best friend across the face and feel nothing about it (yesterday, I hit myself in the heart with a hammer. It took a full 30 seconds to say “Ow”.), it becomes apparent that when your friends are celebrating their 40th birthdays, you will have been long gone.

After three years of painful, expensive tests, being shuttled from one specialist to another, losing things one at a time—first your looks, then your personality, then your ability to so much as leave the house, and finally, I suppose, your mind—there also comes a point where accepting you’re going to die isn’t so bad. Sometimes, you don’t need a doctor to tell you there’s not much need to plan for a future. You just know. You know the lack of help and understanding from the world of medicine that might have saved you, or at least given you the heads up to keep your priorities in order, didn’t work out for you, and with every new doctor and every new test, you hope and you hope—until you lose something else. And then, it’s just devastating, because you’re still sane enough to remember when you had “so much potential”. You realise how dangerous hope is, and how much it crushes you when you are let down, as you always have been, and always will be. And you stop hoping.

People have to understand that feeling this way is not the same as being crazy, or suicidal. It’s a very rational wish to think that if you can’t fully enjoy your life, if you can’t live free and happy, there’s no point to life. The quality over quantity argument is a strong one. Some people feel this way, and others don’t. For me, life has always been about experience, and without experience, there is no life. This year, I lost the ability to have experiences, to do anything I love, to share my life with the people who matter. And that’s when it became clear to me: I am going to die, and it’s OK, because I’d rather leave a little earlier than spend life as a suffering shell of a person who is reminded every day of how much she’s lost.

My favourite part of the day is when I first wake up. I don’t want to get out of bed, because I don’t want to be reminded of my damaged body; that I am old, that I am broken, that I am dying. Instead, I think of other times; when the sun shines, I remember walking on the beach and thinking about love and the future. When it is spring, I think of all the adventures I’ve had with such a large collection of friends and loved ones over the years. When it snows, I remember being 13 and listening to the radio in the morning and hoping, hoping, hoping that school will be cancelled. When it is autumn, I remember the first day I landed here in Atlanta, and how I was once an idealistic girl who believed in fairy tales and I wish I could have had that longer than I did. I remember people and things and places and experiences I wouldn’t trade for the world. I remember growing up, and my family, and the African violets in my window and the sounds of music from the neighbours next door and how peaceful it all was—and how excited I would be when I woke up for a way to make life a little more interesting. I remember performing, and all the times I was wonderful, and people clapped for me…and all the times I made a fool of myself and was too naive to notice. I remember traveling, I remember falling in love and having my heart broken and doing it all again. I remember taking chances other people never would have.

Most of all, I remember loving life and wanting to experience everything in the world on so much of a grander, extraordinary, memorable scale than everyone else. I remember loving people, and wondering how a plain, over-emotional girl like me managed to create such an adventurous life, filled with friends and lovers and drama and enemies and a life you’d expect to see on a TV soap.

And, for a while, I am happy, because it has been so long since I’ve woken up and had anything in life to look forward to. So, when I wake up, and am able to remember what it’s like to feel that way, to be young and healthy and energetic, I am, for just a little while, happy.

Then, often, I am very sad because I am angry. I am angry that I should have lost so much. I am angry that nobody can help me. I am angry that for my exciting colourful life, I will die alone, not really understood by anyone. I am angry that someone who once loved life so much and has been so freaking resilient is just losing everything, piece by piece.

I am angry and sad because I am either going to die, or be forced to live in a prison my own body has created, and I wasn’t ready for that. I am no longer young, but I am not old, either. I imagine the way I feel is the way people feel at 75, 80, 90, as they look back at their lives and mourn that they are approaching the end. No matter how much time you have, it is never enough.

I always thought the way in which I loved life and the passion with which I lived my life in an “All the world’s a stage, and my play is an adventure!” manner meant I would have many, many more opportunities ahead.

I suppose I’m not the first in the history of the world to make that mistake.

Sometimes, I look at the sun, and wish I could rewind time. All of the sudden, it is 2011, and I decide to stay in my hotel room and do my work for the day, instead of drinking vodka and orange soda and heading to the beach, because that’s what one does on vacation. I wonder if that one mistake ended my life. Life has been fragile, and ended by less. I don’t think about those things, because that is not me. I am impulsive and I just want to make every day feel happy and special and it doesn’t occur to me that consequences can ruin your life.

Sometimes, it is 2008, and I am annoyed by family obligations and avoid talking to them because they don’t really understand anything about me. I remember champagne and my dad trying to operate the BBQ and my brother trying to get the XM satellite radio to work, and me ignoring everyone and texting the entire day, and wishing I was elsewhere. I had no clue it was one of the last years we’d ever have together like that. Someone I’ve always wanted to get to know keeps trying to extend opportunities for us to meet, and I keep finding excused. Someone important to me wants me to change my plans and spend more time in a different city. I don’t do any of it, because I look it the mirror and see the first signs that I am growing old and fat (although I am 6 years older and 30 pounds fatter now, and I find that girl ridiculous), and I worry that the men who I once believed would love me immediately and no matter what would judge me.

Sometimes, it is 2006, and I think my world is over because so many things have happened to me and I have virtually no one and nothing—but I can lie in the sun in the pool in my bikini and listen to Coldplay. I am still young, still healthy, still pretty, and I don’t doubt I will somehow be OK. I remember that I am in this mess because of my own bad decisions, because I hurt people, took people for granted. I thought I was Paris Hilton, and life was fun…until it wasn’t. I suppose that’s a lesson she learned, as well.

Sometimes, it is 2001, and I am chatting with a stranger on the internet about how our lives will fit together in the future, and how with one decision, the course of life is altered forever. It was. I am still shocked when I drive through the part of Atlanta I no longer frequent but used to call home, and it seems like it was yesterday. I wasn’t a very good person back then; but I wasn’t the only one. We were all young, and I suppose a lot of that is to be understood, and expected, and forgiven.

Sometimes, it is 1996, and I am in New York City, and I am sitting on a bench in front of an office building watching the people go by…and it occurs to me that I am in the one place I’ve always wanted to be my entire life is now where I am, and I should be ecstatic. I am shocked because, instead, I am lonely. Everything moves so fast, everyone seems so confident, and so indifferent, and I wonder if I’m too fragile, too sensitive after all. It turns out, I’m not.

Sometimes, it is 1989, and I am spending the day/evening at the street fair, playing games, eating food regardless of how many calories are in it, experimenting with vodka stolen from the stash of a friend’s mom who is a flight attendant and kissing boys I don’t really feel anything about because I don’t want to grow up to be that girl who doesn’t know how to kiss boys, and doesn’t know how to make people like her. Turns out, I would never have to worry about that much…but I would never stop. It is so odd how things can be complicated and easy all at the same time.

Sometimes, it is 1985, and I am just a little girl, staying with my cousins in the country. My aunt does not like me; she calls me a little princess with a snort in her voice, she rolls her eyes when I speak my mind, and I always speak my mind. Every day, I ask if she likes my outfit, and twirl excitedly, and she tells me I have no need to always call such attention to myself, I’m fine and ordinary and just like everyone else. I don’t know if it was meant to be cruel, or character-forming, but it stung. I would go back to my room and punch my stuffed animals. I wanted to cry, but I never did. It wasn’t right for her to take away my happiness when she was so wrong. I was worthy of attention, and I wasn’t going to be just like everyone else.

It is 2014, and she was wrong. And I am crying because I had such a short time in which I was allowed to really be me. The brighter the candle, the more quickly it burns, and is extinguished, and forgotten.

Perhaps it would have been better for me had she not been wrong.

I know this much: there is never enough time.

Tonight are the Academy Awards, which has been one of my favourite annual traditions since I was a little kid. I’m actually not really big on awards ceremonies, and watch few of them. They tend to be long, boring, and full of ads from sponsors and critiques of how celebrities are dressed.

However, I’ve always liked movies, and the Oscars are one tradition from the glamourous days of “old Hollywood” that still hold the same appeal. This year, one of my favourite Broadway performers, Idina Menzel, will be performing. There are also scheduled performances by Pink! and Bette Midler, and though I’m not a huge Ellen fan, she at least has the potential to be funny.

I haven’t seen most of this year’s nominees, which is a little unusual. Because I can’t see movies in the theatre yet, I usually have to wait for DVD/On Demand releases. Unfortunately, many were released too late in the year to have made it out yet for me to see them.

So, my Oscar picks aren’t highly credible. They’re not based on much other than bits and pieces of scenes I’ve seen from the films, buzz about the films, and personal intuition. But, since I pick every year, here are my choices! :)

This year, it’s tough to choose because I have a feeling there’s not one movie that’s a clear contender for all the awards. There are bits and pieces of each movie that is better than another; it’s almost as if you should put them all together to create one epic movie.

Best Picture:”12 Years A Slave”
Best Director: Alfonso Cuarón, “Gravity”
Best Actor: Matthew McConaughey, “Dallas Buyers’ Club” (I don’t think this is the right pick, but I think it’ll happen.)
Best Actress: Judi Dench, “Philomena” (Almost everyone is calling this for Cate Blanchett, surprisingly. “Blue Jasmine” must have been an awesome movie. I maintain that Judi Dench is legendary, and Woody Allen just isn’t universally loved.)
Best Supporting Actor: Jared Leto, “Dallas Buyers’ Club”
Best Supporting Actress: Jennifer Lawrence, “American Hustle”
Best Adapted Screenplay: “12 Years a Slave,” John Ridley
Best Original Screenplay: “American Hustle,” Eric Warren Singer and David O. Russell
Best Animated Feature: “Frozen”
Best Cinematography: “Nebraska” (we saw it last night. I compared it to a Chekov play; musings about life and death with the most mundane situations and dialogue possible. The camera work was good, though.)

Academy Awards are on ABC this evening at 8:30, for those of you on the East Coast. I’ll probably be commenting via FB. ;)

The past few weeks have not been good ones in my world, and I’m off to my doctor on Tuesday to find out why. I’m not holding much stock in one visit to the doctor to yield any solutions; a visit to the doctor often means referrals to a different kind of doctor, tests, lab work, drugs, anything to try to figure out what’s wrong, because if you’re me, the doctor has no greater of an idea than I do. Many of the things that could be causing my unique and completely exhausting set of symptoms are ideopathic, meaning they’re generally diagnosed by ruling out everything else. That is a long, arduous, expensive process..especially when half the doctors you see immediately tell you it’s just anxiety. (I know what anxiety feels like. I live with anxiety daily. We’re like BFF’s and stuff. This is not that. This is a completely different way of feeling bad.)

The truth is, since getting ill in 2011 and having a very rough time of it (spending 6 months where illness, doctors, tests, and fear dictate your life), my insurance dropped me. It was unfortunate, just as I finally got a test result that was positive (YAY! Something’s ACTUALLY WRONG!), I couldn’t afford to follow up with the quest to find a diagnosis anymore. So, I just took the pills the doctors prescribed, and trusted that the doctor was right: I had an inner ear problem that would improve over the course of a few years, and a mild heart arrythmia, and both of these caused totally treatable anxiety.

I felt a great sense of relief at accepting this diagnosis and moving on with my life. Once there were no more doctors and tests, there was a little less fear, and over time, things DID improve. By 2013, I was able to travel, go to parties with my friends, look strobe lights and loud music in the eye and not care, and even handle extraordinarily stressful things. I even went to a concert! It wasn’t always easy, but panic attacks were not a regular occurrence anymore. I started to enjoy life again and feel like myself. I was so confident that the old me was back that I went to an audition for a musical and sang at karaoke and didn’t once think, “What if I faint in front of all these people?”

I think I’ve cried more in the past month than in all of 2013 combined, and it’s because the illness that has no name returned and took everything away again. It seems so unfair, to give someone back all the things they love about life, and then to take everything away suddenly, only worse than before. What makes it worse is that not only do I have a sense of rotational vertigo (Tilt-A-Whirl in my head) feeling most of the time, I feel like I’m not even in my own body, and walking through fog. I can’t ride in a car to get to outings with my friends, because the vibrations cause a new and different kind of panic, as if my heart is stopping and I may faint. It is like “almost dying” 18 times a car trip, and and any given point, I’d rather walk miles in the freezing cold and darkness than be in the car. It is quite literally the worst thing I’ve ever had to endure, and I haven’t had an easy time of it in life. I live in a city where you can’t go anywhere without riding in a car, so almost everything I love in life has been cancelled. My relationships with others are suffering. My enjoyment of life is suffering. Sometimes I wonder if I am, in fact, insane. Other times, I wonder if I am dying: the consistent misdiagnosis of my symptoms has to be one of the most frustrating parts. Science is supposed to have answers, and “We don’t know.” isn’t an answer. I am afraid that I will be one of those people who has their life destroyed and is on their deathbed before an answer is found, and it seems all so terribly unfair. One day, I was on the beach and excited about strolling the Boardwalk, and the next, nothing was ever the same. Sometimes, I feel terribly depressed, and wonder if that day on the beach when I felt relaxed and happy was the last good day I’ll ever have.

Of course, it hasn’t been. There have been some really special moments between the middle of 2011 and now, but the negative times with the illness seem to overshadow the positive ones. I can’t think of life in terms of “having a future” anymore. I no longer view relationships with others from the standpoint of “How long are they going to be in my life?” I just want to live long enough to see my 35th birthday. Then again, there’s the issue of quality over quantity, and not being able to leave one’s apartment seriously compromises the quality of life.

So, I cry a lot. It’s like I’m in mourning, and I am, for myself. Rather than making a “bucket list”, I have “If I Get Better Lists”, things I won’t take for granted or be afraid to confront or too lazy to do if I am strong enough to live a normal life. Because it’s not like I want to die or anything; in fact, it’s the opposite. I just don’t want to have to live like this. I feel old, and tired, and am not sure what I can contribute to the world as a shut-in. It frightens me that I might never get better, and I keep pushing myself to do the thing I know feels like it might kill me. I don’t know why. I always say it’s for other people, and because I’m afraid of disappointing everyone. But it’s probably really for me, because I’m so afraid of losing everyone and everything. If I let illness take away every little piece of who I am, I don’t know why I’m here anymore. I know that every time I get in that car, it may feel like the worst day of my life. Yet, I keep doing it. And I end up panicked and sick and crying and frustrated, and I know the Guy I Am Currently Dating must feel like he hates me sometimes, because I am not the person he signed up to be with when we met. But I keep doing it, because just once, I do not want *it* to win.

I know that once Tuesday comes, it will be back to the never-ending struggle of trying to get medical professionals to take me seriously; to listen to the fact that I have new symptoms, and they are keeping me from the things and people I love…and to convince them it is not anxiety that is doing this to me (when neither anxiety medication nor alcohol take away the effects, and you can be a zombie and still feel adrenaline surges through your body from a car going 20 mph, it’s a physical issue.). I have anxiety because my body is attacking me, and I’m pretty sure if I had money and a team of specialists, I’d be out in the world singing, dancing, wearing funky costumes, and stirring up trouble by now. It is tough not to feel anxious and frustrated about that. It is hard not to feel depressed and appreciate the good things, when all you see are the road blocks. It is hard not to lose hope when nobody has any answers for you, and all you hear is how it’s going to be Okay, but nobody can tell you how or why. It’s hard not to feel angry because words are just words; they don’t change anything, and what I want are actions and solutions and results. It’s hard not to feel resentful when you are broken and asking for help, and those who care cannot help, and those who can help don’t necessarily care and let you slide through the cracks.

One of the things that has kept my spirits up has been watching the Olympics. Not only do I love them for the entertainment value, but because they are inspirational. Most people aren’t big fans of all the overly emotional “stories behind the people” segments, but I always have been. The people who go on to become successful are always fighters; people so often go through difficulties with health, mental stability, death, family issues, just to get the chance to compete in something they love, often with little real reward. People break their legs, get concussions, suffer from cancer and Lyme disease, and come back stronger than ever. It makes me feel that if they can be that strong and emotional tough enough to make it through setbacks that seem so great, well, why can’t I? Why can’t I be emotionally and mentally tough enough to not let Mystery Illness win?

But, you know, I am very scared. I’m scared of finding out the answers, and equally terrified I never will. So, please, keep me in your thoughts today and tomorrow. I’m going to need all the extra courage I can get to try to overcome the things that have been holding me back since the beginning of the year.

“”I am now quite cured of seeking pleasure in society, be it country or town. A sensible man ought to find sufficient company in himself.” ~ Emily Bronte

I have an old friend who is notoriously bad at communicating, both in terms of reliable communication frequency and not flaking on things, but whom I often accuse of not listening to me. I say this because I realise I’ve told him the same story three different times, and he always reacts like it’s something new. Other times, though, he’ll remember the smallest off-hand detail of something and I’ll think, “Oh, he was listening after all”. Honestly, I really have no idea.

Anyhow, this particular friend sent me an early anti-Valentine’s gift, which contained two books by an author I hadn’t read yet. I moved them to the top of the reading queue, because I’ve received books as gifts quite frequently since December, and it’s going to take me a while to catch up. The author’s name is John Green, and he appears to write young adult literature that’s easy to read…but profoundly moving and perspective-altering. It’s hard to think of him as a young adult author.

The books I received were called Paper Towns and The Fault In Our Stars, and are both the type of book you can read in one night, and are worth staying up to do so. It seemed odd to randomly send me books from an author I’d never mentioned, especially from someone who isn’t a frequent fiction reader, but I had to chuckle when I saw the significance behind the choices. Paper Towns features a character who is appealing to everyone because she is perceived as a very stereotypical manic pixie dream girl trope, only she is not, and the story focuses on the harm that can be done when the world insists on seeing people as images rather than humans. (something I have discussed at length, both in abstract terms and in relationship to my own heartbreak and challenging life experiences.). The Fault In Our Stars is both a black comedy and a tragedy that deals with a group of kids with cancer, and focuses on things that have very much been on my mind lately, like “When I die, will anyone remember me? Did I contribute anything by being on the Earth?”. Although both books are very sad, I smiled a little, because I won’t ask my friend “Do you actually LISTEN?” for a while.

I recommend reading them both, even if you don’t read young adult literature as a rule. Especially when it comes to The Fault In Our Stars, you remember there are books that are tear-jerkers, and then there are books that have you sobbing so hard you can barely see the words because your face is swollen up, but you want to finish the story.

I haven’t blogged so frequently lately, because, honestly, I haven’t been having the easiest time with either my physical health or my sense of emotional stability. In fact, I’ve been having such a hard time that I feel like life is almost as tough as when I first got sick in 2011. I’m worried I’m becoming agoraphobic, reclusive, because for the most part, the things that make me ill exist outside of my protective little bubble of an apartment.

The relapse of symptoms seemed to start in late December, when I got very ill, first with a flu and then after NYE, with cold-like symptoms. I finally went to the doctor, and was told I had a sinus infection and lots of fluid in my ear. As I blogged about earlier in the year, I screwed up an audition because of laryngitis. Those things seemed to go away, but a new symptom emerged…panic attacks in the car. More specifically, the panic attacks are triggered by the vibration of the car, which I feel strongly in the right side of my abdomen. It takes us 2 hours to make a 20 minute-trip, because I feel numb on the right side of my body, followed by tingling and flashes of heat from that space in the right side of my abdomen, it feels my heart is stopping, and then I immediately feel like I am either going to faint or have a seizure if I cannot get out of the car. (I’ve experienced both in my life, so I don’t know which, but they’re equally scary.) These symptoms are often accompanied by pacing, severe vertigo, light sensitivity, incredible feelings of being thirsty, and a desire to claw my own flesh off and/or pray for something to kill me. It is most unpleasant and, I’ve discovered, easier just to stay home and be anti-social but somewhat sane.

(Side note: If we’ve been driving around after a night of drinking, I have no problems whatsoever. Alcohol seems to put an end to all of these symptoms.)

Then, of course, the other night, the unhealthiness intruded upon my safe space. After staying up chatting with a friend online, I was exhausted and went to sleep, like any other normal night. What happened, though, was that I jolted upright with my heart beating out of my chest, thinking hours had passed. In reality, it was only 20 minutes. As I woke up, I realised I was merry-go-round dizzy, my eyes wouldn’t focus, and so I turned on the light in alarm. Within seconds, I had spells of feeling faint, a head that felt too heavy to keep upright on the right side, and noticed that my right foot felt weird, like it was filled with cement and hard to move. My arm was numb, everything tingled, and I thought I was having a heart attack. I grabbed for some Izze and candy in case I was having a hypoglycemic episode that my body alerted me to in my sleep. I was rational enough to consider maybe a panic attack started in my sleep, or maybe a heart episode, or maybe even a seizure. For some reason, I didn’t cry or scream or have irrational panic like I usually do. I just forced myself to walk around and try to shake it off, and pray that I didn’t die. It took 40 minutes, 2 Izzes, a Hershey’s bar, and extra doses of both my beta-blocker and Diazepam to return my mind and body to normal. I was absolutely terrified, and I’m not sure why I didn’t call for help, except it seems that every time I do, they tell me that I’m just having anxiety or my sugar is low. Fortunately, that night House was on, and I stayed up until well after sunrise watching House re-runs. (Yes, don’t ask me why, but watching House as a sick person makes me feel comforted, just like watching Law & Order makes me feel strangely safer instead of giving me nightmares. Maybe I just like the idea of someone smarter and braver than I am out there in the world, someone who can solve problems, and maybe, if he existed in real life, would be able to diagnose my illness and give me my life back.)

The next night was slightly better. I was exhausted, and went to sleep early, and still woke up with my heart beating really fast and feeling dizzy. This time, I was able to take some extra pill and just go right back to sleep, where I stayed for the next 10 hours.

I have been crying a lot, too, something that is not really usual. Anxiety is a problem in my life, but feeling depressed for long periods of time isn’t. I haven’t always had it so easy in life, but if I don’t have any other redeeming qualities, I’ve always been this very resilient person. This recent relapse of Mystery Illness Symptoms has hit me hard, though. I am afraid I will never have my life back. I am afraid I will never have a chance to do all the things in life I want to do. I am afraid people will stop loving me, or even liking me. I am afraid I let everyone down, disappoint them, and have become the sort of person people really don’t want to know. I am afraid I am ruining the lives of the people I care about. I don’t actually want to die, it’s just that sometimes I am so terrified I am going to die and nobody even knows what’s wrong with me or why I went from being a normal and healthy girl one day, to living like this for three years. I am terrified that dying hurts and is scary and I don’t want to be ERASED, so I just want to find the least painful way for it to happen, if it has to.

All the things I’ve read seem to point to the idea that I have an inner ear disorder which goes through periods of not really affecting my life too much, to pretty much removing any sense of normalcy from it. Since out of all the specialists I visited and tests I had done, the ear tests are the only ones that came back positive for abnormal results, I wish I hadn’t been dropped by insurance just at that time. However, I have since learned that there is not really a cure for most vestibular disorders, and it is very common for people with them to develop anxiety problems. In specific, reading the page about Meniere’s Disease sounded so much like everything I’ve gone through.

It is hard to get a diagnosis or a treatment for these disorders. They are often cured by surgery if cases are extreme enough, but there’s about a 50/50 ratio between curing the problem and losing hearing in the affected ear. I’m the kind of person for whom odds are never on my side. But, still, even knowing all these things…just seeing a doctor who doesn’t dismiss me as crazy, who has treated people like me before, who doesn’t judge me, who knows about these kind of complicated problems that other doctors haven’t even heard of (sometimes, I think I know more about medicine than some doctors I’ve seen, and probably should have gone to medical school)…that would be reassuring. Knowing that what’s wrong with me isn’t psychosomatic, that it’s a thing and it’s real and it has a name…that can be reassuring to someone like me. Answers and having someone to trust who understands your condition, that’s worth a lot.

In the meantime, I’ve lost a lot of weeks of fun. I’ve missed out on adventures and people and being me, but there are worse things that could happen, I suppose. I’m still alive, and still even hopeful sometimes.

Maybe the good times aren’t gone forever, and reading these heartbreaking but well-written books recently reminded me of that. As long as I’m here, maybe my presence can still have meaning of some sort. Maybe people will still love me and miss me when I’m not there.

I don’t really, actually want to die. I just want to be free, to live without limitations constructed by my own body and the fear that never really goes away. It’s a little like being in prison, and dreaming of the day when you’ll be free and return to normal life. For many, “normal” won’t ever be a thing anymore. But when it’s the thing that keeps you going, you have to hope.

It’s just so hard when it all comes crashing down, and you’re lonely and misunderstood and disappointed. You don’t think, “Well, I had a year of normal, and I got to do all these great things, and people remarked on how I was so much better”. You just think, “I deserved more time to enjoy life and be free”.

Because if there is one thing I’ve always been, it’s a person who enjoys life and adventures and freedom. When you find yourself so limited that you can’t ride in the car to a friend’s party, it’s a very bitter pill to swallow. It is, in fact, hard not to feel sorry for yourself even if you know it’s selfish.

It’s hard to wonder why changing, living a life of quiet solitude instead of always being the life of the party, is so incomprehensible when it’s just a slight personality shift that illness requires. After all, it’s being healthy that’s what matters, not living it up and having crazy experiences until you’re old.

But, honestly, I don’t feel that way inside. I wish I did. Plenty of people live quiet, isolated, understated lives by choice, and find peace and happiness. It just..is so the opposite of what I want.

At least books, Olympics, and friends in virtual form have made me feel a little less alone, and at least for now, The Guy I Am Currently Dating just likes spending time with me…even if that means not leaving 1250 sq. ft of space.

Today, I came across an article on Facebook that really resonated with me. It was by someone who didn’t believe in pressure and limitation of New Year’s Resolutions, and just wanted to be a happier individual that didn’t obsess over things that really don’t matter that much. So, instead of creating a bucket list, she created a “Fuck It” list; a list of worries, concerns, anxieties, drama, and nonsense she wanted to remove from her sphere of existence.

I used to be much, much better about managing stress and anxiety, which is also to say that I was much better about living life in a fairly irresponsible way and not freaking out about situations I couldn’t handle until they actually descended upon me. For instance, even during the most challenging time of my life, where I’d lost all of my friends and was being kicked out of my condo and didn’t know where I was going to live, I managed to not freak out. In fact, two days before having to leave my home of years thanks to a very spiteful acquaintance-turned-enemy, I hosted a goodbye party for anyone who still cared enough to show up. During that evening, I drank multiple bottles of wine, went skinny dipping in the pool, hooked up with a friend’s ex-something-or-other, and skipped through the rather fancy lobby in front of the security guards, who were also from the Atlanta PD. In the midst of the chaos of trying to find a place to stash my stuff and figuring out how not to live on the street, I was more focused on this rather senseless and crazy fling than on things that mattered.

And when things went even more wrong and I moved in with an ex-boyfriend, and had no sense of how to get my life together, I approached everything with a “one day at a time” attitude. Everything was falling apart, and I was still listening to my iPod and tanning by the pool and playing online poker. I was trying to figure out my future, but didn’t wake up with the sense of “If I don’t fix this today, I might as well die.” I was still happy when I woke up in the morning and saw the sunshine. It wasn’t that I wasn’t aware that I should probably be closer to suicidal than thinking I was Paris Hilton recovering from a little “oops”, but it was a coping mechanism I’d always employed. Concentrating on the moment always made me more appreciative of the little things. If you’re aware that next week, you can lose everything, small things like trips to Cracker Barrel or being able to watch TV in my PJs or going out in the sunshine become things that really make you happy. For most people, most days, the little things are remarkable and life seems boring if you don’t set the bar higher for “interesting things that can happen to you”. When your life is really falling apart and you have no sense of stability, you don’t want interesting. You don’t want adrenaline rushes. Everything you have, even time that is so free of stress that you can dance around your room with your earbuds in, seems so much more valuable. I think the time in my life where I most appreciated how many good things I had in my life immediately followed the shock and trauma of having everything taken away.

These days, I can’t cope that way anymore. When things are not good, I am terrified of the consequences; I lie awake at night thinking about what it’s like to die, or what if I didn’t wake up the next day, or if I became homeless or got arrested or something happened to someone I love. (not that I have any reason to believe these things will happen.) When things are good, I rarely remember how to live in the moment. Instead, I’m stressing about the next moment and the next.

My doctors tell me I’ve struggled with symptoms of anxiety most likely my entire life. However, I never had any idea. Nobody did, because my way of coping with life was to appreciate what you have today, and if tomorrow sucks, deal with it then. In fact, except for my health issues, my life today is about 1/10th as stressful or dramatic as it once was. I’m no longer getting myself into “situations” wherever I turn. I no longer think of the future as “planning for next week”. And when things make me unhappy, I do not remember how to push them aside and live in a way that’s even more fearless or even more appreciative, because they may be temporary. Instead, I cry for the possibility that the worst might happen, and I don’t appreciate the little things I do have so much as mourn for things I used to have but no longer do.

Somehow, my coping mechanisms disappeared, and it left me an anxious, worried, frightened person. The person who used to handle situations that would cause other people to break down for me is suddenly a person who does not routinely wake up feeling joy anymore. She is a person who feels like a failure, who is scared her health will limit her or kill her and doesn’t know which is worse, who can’t remember “Today is a good day simply because nothing bad happened.” Some people might say I simply grew up and started thinking like a responsible adult, but I don’t feel better for the change.

I kind of miss those days when the worst things in the world were happening, and I just kept on living and dealing and moving forward. I don’t miss the horrible things that seemed impossible to handle, but I miss how wonderful it felt just to appreciate one of life’s small pleasures without fear or anxiety. It would be the highlight of my day to walk down the road for a slice of pizza and a rum and Coke, just because I could. I remember once, after not only barricading myself inside in the suburbs for months but also not drinking alcohol at all, taking the train over to Decatur and having a martini at lunch at one of my old haunts. I wasn’t worried about being seen in public and having an egg thrown at me, and it felt like freedom. I remember thinking I was too young to feel so worried and so scared about the future, and it gave me the courage to move on. Moving on wasn’t easy. As soon as I started to take small steps and appreciate the little things, though, the more I rebuilt my life.

I’ve had to rebuild my life often. Different cities, different friends, different jobs, different relationships. Long-term doesn’t seem to work well for me, and living with a life of little stability is something that takes courage. Now that I am not living that way, there is so much more time to think, and everything is so much more difficult to handle. I think about the future, I think about my relationships, I take every failure, every heartbreak, every loss, every personal deficiency so much to heart.

So, honestly, there’s probably something to be said about completely not giving a fuck about most of the stuff that adults are supposed to spend time worrying over. What do I think about myself? What do other people think of me? Am I with the right person? Am I loved? Am I successful at anything? Am I on the right path in life?

Life used to be an adventure, and you accepted that you’d have to adapt and change as it went along. That’s just life. And in the meantime, a quiet day where you got to sit by the pool or go dancing with your friends or watch your favourite TV show with pizza could be a pretty good day. As we get older, our requirements for things that make us happy seem to get higher and higher, and the definition of things that will ruin our days become a much broader spectrum of things. For instance, the past few New Year’s Eve’s of my life have been spent with me crying, because of arguments over relatively small things, like silly string and forks…whereas horrible New Year’s Eve’s in my 20′s were defined by very dramatic, life-changing moments that said “This is an end to a chapter of your life; you have to change course now”.

I do not think that seriousness and responsibility is bad, but life isn’t necessarily something to be mapped out in an obsessive way just because you become an adult. And, if you spend most of the good times thinking about the future and most of the bad times crying about the past, and most of the unremarkable times worrying about everything and everyone, you miss out on a lot of appreciation of the present. You miss out on the little things that can create a feeling of security and freedom and peace in your life, and that feeling isn’t something that should only be reserved for the very young, for those still naive enough to feel hopeful.

There are people in my life—very few people, and not those I’m able to see as frequently as I’d like—who put me in this frame of being, and as a result, help me cope with some very trying times and still look forward to finding happiness in the small things. For instance, one of them is a friend who has made a very conscious decision to live life without caring about the minor drama, without having life ruined by small mishaps, without being affected by what people think or say about him, without being bothered by 85% of what most people are bothered by. He’s truly decided to adopt an attitude of “Life is too short to only give a fuck about the really important things”, and as a result, he puts other people at ease. His lack of emotional delicacy and unwillingness to sugarcoat things is something that actually comforts me, and puts life into perspective.

There are a few others, but for the most part, a majority of the people I know seems just as stressed and unhappy and anxious and worried and care about just as many irrelevant things as I do. People care so much about image, about prosperity, about the future, about what others say and think, about having enough, about being better than others, about judging others—and it’s so limiting, and so stressful.

There comes a point where you realise that you can de-clutter your emotional space the same way you clean up your living space. You put things away when you don’t need them. You throw away things you won’t ever need or only serve to make you feel negatively. You realise that tomorrow, something great might happen, or something horrible might happen…but it doesn’t matter, because now you’re perfectly fine. If you’re not, you will be.

Giving a fuck about everyone and everything can be toxic, as toxic as not caring about anyone or anything at all. Not every moment is worth treasuring, because, yep..it’s just a moment. But once in a while, you’ll feel a sense of freedom and like everything that weighs you down has been stored in the closet, and when that happens, that moment is a good one. It doesn’t matter if it happens when you’re travelling the world, or when you’re making Kraft Mac & Cheese.

Fearing the unknown and being paralyzed by mistakes of the past are two really simple ways to make sure you never go anywhere, do anything, appreciate a single moment, because you’re so hung up on yourself and stuff that doesn’t matter. All of life is uncertain and unknown. And every day will be a yesterday eventually, and there may have been a mistake that day. There will be more.

I wish I could remind my anxiety of what it used to be like when it wasn’t consumed by being afraid of everything that didn’t have an explanation, or controlling the future, and was just a little piece of baggage along for the ride.

I wish I could remind anxiety that there are things worth being excited about and adventures to be had, and even if my “mystery illness” turns out to be a fatal five-years-to-live thing, they can still be a really worthwhile 5 years. When I was outside of Atlanta traveling this summer, strangely, life seemed to take back a sense of perspective. A little sunshine and good company and time out appreciating the small things, and I actually woke up every day feeling 10 years younger and looking forward to life.

I wish I knew how to do that in the context of my actual life, because I think I’m missing out on a lot, not feeling that excited about life every day. I wish I knew how to be happy about my ordinary, every day life, rather than feeling crappy about all the ways in which it isn’t the life I want, I’m not the person I want to be, and I feel powerless.

I think it would change a lot, if home felt the way I do when I travel…or if home actually felt like a safe, comforting place and not a temporary stop haunted by a lot of negative memories. I wish I could remember that my life is still full of possibilities, and not obstacles that all say “No” forever.