Ramblings of an unsure heart.

inhaleIt’s a quarter past 1am. I feel physically exhausted, yet my mind shows no sign of resting anytime soon. This is a common pattern that I’ve surrendered to in the last year and a half or so.

As I type these words, I feel the not-so-rare mental chatter pop up– almost all negative, self critical, emotionally abusive to my own heart. So instead of indulging it, I’m choosing to describe it with words.

“You’re so pathetic,” my mind starts. “You have everything that you need, why can’t you just suck it up and be happy?”. As I reflect on this, I hear my fathers voice describe his father telling his eight year old self to “just suck it up!” and I ponder how many lifetimes of karma I am working through…

I go over the reel in my thought-space of a time when my heart felt truly whole, and I wonder if the belief that I am somehow unworthy of love instilled itself in me from recent heartaches or if it’s something much more old, maybe even ancient.

My mind hovers over the word ancient and I start to mull over esoteric concepts like the memory in my blood, and just how many peoples shit I am carrying on my shoulders… I want to ask someone why the fuck it’s all so complicated, but the person who knows the answer to that doesn’t exist.

“People don’t have food, Julia. Your problems are minuscule.”

I long for times where things don’t seem so dark or lonely or empty. I pause to feel that this is just a reflection of one side of my heart, the heart that is unsure, and this will pass. There are moments, some seem to last forever, where the sun of my soul is always shining and there are no worries.

There are no worries. That’s the irony.

I contemplate deleting this whole incoherent thread, but decide against, to avoid future regrets. I know nothing. For the eight-millionth time, I tell myself that it is all how it’s suppose to be, and I wonder how long it will be until I believe that again.

Just keep swimming. Just keep swimming. Just keep swimming, swimming, swimming.

Maybe one day you’ll teach me how to trust my heart, and you’ll tell me that I knew how all along. One day these complexities will unravel a bit and I’ll be able to relax. One day and that’s okay.

“Great Mystery, teach me how to trust my heart, my mind, my intuition, my inner knowing, the senses of my body, the blessings of my spirit. Teach me to trust these things so that I may enter my sacred space and love beyond my fear, and thus walk in balance with the passing of each glorious sun.”
~Lakota Prayer~

Words on pain and why it’s necessary~

heart-in-your-hand-1280x800“Your pain is the breaking of the shell that encloses your understanding.
Even as the stone of the fruit must break, that its heart may stand in the sun, so must you know pain.”

~Kahlil Gibran

 

There’s a vague memory in my soul of a time when we knew, wholeheartedly, that pain meant growth and wisdom and opportunity, and that in order to know yourself, you must let your heart break open. over. and over. and over again. And it wasn’t until you felt that you might lose your heart altogether, that you would truly know your deepest self. It was through our darkest moments that we found light and love and the capacity of our own openness.

I remember a time in my life when I thought that I had actually avoided heartbreak. Though it was naive, I thought that I was guaranteed a life free from emotional suffering, because I was in an eternal safe box, with someone who was suppose to be my life partner. Alas, my heart was eventually broken, and I thought there was no way I could survive the pain. I remember realizing that I hadn’t left the same place in my apartment for an entire week, and it was when friends began coming over just to make sure I would eat, that I realized how badly I was losing myself. Literally. I lost 25 pounds in 3 weeks. Anytime I would step onto my yoga mat, I would break down and sob. Many moons later I realized that all those times, I was still practicing yoga.

Every time I broke down and felt as though the ground was getting ripped out from under me, and that my spirit was evaporating, I was actually getting to know myself… She was a girl whose story had not been told yet. After she had doubted everything she had ever known about life and love and loss, she found that she was humble, but her ambitions were enormous. She had felt pain so deep that she eventually found love and she wanted nothing more than to share it. She pondered what security meant and came to realize that the truest love she could have was her own, and that only when she loved herself fully, could she really love another. Every time she sobbed on her yoga mat and thought she was bad for not being able to do asana, she began to see that she was on the path of the deepest self practice she’d ever known.

“Albert Camus once wrote, “Blessed are the hearts that can bend; they shall never be broken.” But I wonder if there’s no breaking, then there’s no healing, and if there’s no healing then there’s no learning. And if there’s no learning then there’s no struggle. But the struggle is a part of life. So mustn’t all hearts be broken?” ~One Tree Hill

We want to avoid pain because we’re afraid of what it will mean when we see ourselves fully. When we are in pain, we’re vulnerable to ourselves, to our own minds. What will it mean when we’re not defined by someone or something or accomplishments? What’s left? I believe that when we strip away all the surface stuff that our lives are made of, all of the factors of our identity, all the ideas that we’ve created about ourselves, we are left with our true nature– love. I don’t think we can truly know our own love unless we break first. We want to protect our hearts and we think that by keeping themsafe, we’re doing something good, by avoiding pain. But in reality we’re losing the opportunity to truly get to know ourselves, and the part of us that really knows love. So let yourself break. Feel hurt when it’s there. Don’t check out when you see the dark. Let it be there so you can find your way back to the light. And keep coming back.

Then what is there to lose once you know you’ve broken? Absolutely nothing. There is where you find true love.

xx

 

A short note on love~

Tlovehere is a love within me that is boundless. My heart is a rare one, and it is fierce. At the drop of a hat, I fall in love. Mostly with the way someone feels.. not physically, to me, but the way they feel themselves– the way they think their thoughts and sing their song. Also with objects and beautiful things… the smell of rain, a perfect cup of coffee, vulnerable conversations with brilliant humans. But I am most myself when I am present in these moments, seeing you and how you are, and being with you when you are most yourself. I am more myself through the eyes of someone else, when the lines between where you start and where I end, begin to fade– when I look into your eyes and then they become my eyes, and we are both seeing. It happens in milliseconds with a stranger in a bookstore, or when we pass by each other on the street. Over and over again, I fall in love. When I notice that you have a scar and that you have pain too, just like me. When I watch the way you put on shoes, or the way you tie up your hair. Every time I see you, I fall in love. I might never actually get to know you, but in some strange way I feel that I’ve read the story of your life and somehow it makes me feel okay about this whole “living” thing. I might never actually get to hold your hand, but still, we are all just walking each other home.

Alice: “How long is forever?”

White Rabbit: “Sometimes, just one second.”

Stay Where the Light Is

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There is a glowing sphere of fire above our heads, that lives in a place called the sky. There’s this thing called oxygen that we pull into our lungs, always. Little pink beings called roses, bloom in my front yard; they’re something called beautiful. I make sound from my mouth, it forms something called words. I can also write these words and it makes me feel. Have you stopped to notice how crazy and odd this all is? It’s nothing short of a word called miraculous.

“Man is a little germ that lives on an unimportant rock ball that revolves about a small star at the outskirts of an ordinary galaxy. … I am absolutely amazed to discover myself on this rock ball rotating around a spherical fire. It’s a very odd situation. And the more I look at things I cannot get rid of the feeling that existence is quite weird.” ~Alan Watts 

 

Stay where the light is. In this crazy world, full of complexities and pain and love and loss, it’s so easy to get stuck in the darkness. keep. coming. back. There’s a part of ourselves where we know that our true nature is to love with a heart so vast, it can contain the the limitless body of a never ending universe. Live there. Sometimes I leave, and I get stuck. Take me back when you see me there? And I will do the same for you. And together we’ll go back to love, over and over and over again. And our hearts will still ache sometimes, but it will be beautiful. And other people will see and they’ll do the same. And we’ll all keep coming back.

Stay in the sun. Stay with the moonlight. Love more, love harder. Use words to tell someone when you see their beauty. Also use hugs. Breathe deep, laugh hard. Say fuck it sometimes, because that helps too. Make love, make babies, make the things around you beautiful. Cry when you need to.

Keep coming back.

xx,

Juls

~So I, throw my cards on your table~

 

 

A Heart That Feels is a Heart That Knows: The Truth About Living With Arms Wide Open and Ways to Ease the Pain

“The older I grow the more I become certain that it makes no difference what words we use to tell the same truths.”
― Marion Zimmer Bradley, The Mists of Avalon

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There was once a time when we all knew the tides of the oceans– we were in touch with the ebb and flow of this earth. It was necessary to cry when the moon was full and the waves were big. It was essential to laugh when the skies were clear and the stars were bright. We knew when to throw our heads back, arms wide open, in complete acceptance of life being anything but ordinary and everything magical. We knew that to dance was just as vital for our living bodies as the breath. We understood that the only way to come back to ourselves was through the eyes of another, through all others, in our tribe. And with each rise and fall of the chest, we knew that to connect with the beings around us, whether human or wolf or bird, was the only way to truly be home.

We are living in a time where our very own world is out of touch with authentic connection. For those of us that are sensitive to our own beating hearts, we often feel that there is a constant void to fill that can never be truly full. Perhaps the basin of our souls gets replenished from time to time, but not quite all the way– why?

“It’s not that I can’t fall in love. It’s really that I can’t help falling in love with too many things all at once. So, you must understand why I can’t distinguish between what’s platonic and what isn’t, because it’s all too much and not enough at the same time.”

― Jack Kerouac

 

Whether we know it or not, we all crave a connection that is deeper than words can articulate. We all long to feel a sense of wholeness that allows us to brave life, with all its darkness and all its beauty. I know  we make the mistake of constantly searching outside of ourselves for this connection. All the while, not truly connecting with those in our circle. Let’s call it a tribe from now on, shall we? We are in this together and using the word tribe embodies this. If your heart beats and your lungs breathe, we are in this together. If you are a living entity, we are in this together.

The truth is this– It is painful to live with arms wide open. Once you’ve questioned what it all means when this life as we know it slips away, you will never be normal. You will never be able to feel blindly again. All of life suddenly becomes vulnerable and it never stops. You know what it’s like to live with the sudden fear of maybe, kind of, sort of, its all for nothing and simultaneously, all for everything. The most simple round of laughter becomes an act that shakes you down to your core, and tears feel like they can kill you. And somehow, still, you know that it’s fucking beautiful. It is all completely and utterly necessary– heartache, death, birth, confusion, loneliness, beauty, dance, pain– it’s all the same song. We live, we die, we keep going. We will never know why, but we trust that maybe, one day, it will all make sense.

When we live with our arms wide open, we need to take conscious steps in order to care of our own hearts (which in turns takes care of every other heart). Ways to ease the pain:

  • Round up the tribe. Exactly what it says. Find your community. Find your people. Find human beings that allow the space for you to feel safe. Find a tribe that plays in a way where you’re all feeding each others soul.
  • Feet on the ground. Everyday. When the weather permits, take off shoes, remove socks, be completely barefoot. Get back to knowing that the easiest way to connect to the earth is to feel  her. You weren’t born needing shoes.
  • Eye contact. Get comfortable actually seeing those around you. Stop fearing what they will think when they see your soul. After all, they are your tribe.
  • Touch. Everywhere. Yes, even there. Get to know your body. Be really there  when someone that thinks you’re marvelous touches you. Let their words sink deep and touch you everywhere.
  • Be naked. Without clothes and while clothed. Be naked with your word and with your feelings. Let them be free. Let the identity go. Be raw.
  • Love. Every. Thing. No explanation needed.

 

When you live with arms wide open, you have nothing left to lose. You may never be the same, but you know damn well how to embrace the magic of life. You have an innate wisdom that knows what to do at all times. You know on a deep level that you can trust this human experience. You know what you need to do. Do it.

Keep coming back.

xx

Juls

“To love at all is to be vulnerable. Love anything and your heart will be wrung and possibly broken. If you want to make sure of keeping it intact you must give it to no one, not even an animal. Wrap it carefully round with hobbies and little luxuries; avoid all entanglements. Lock it up safe in the casket or coffin of your selfishness. But in that casket, safe, dark, motionless, airless, it will change. It will not be broken; it will become unbreakable, impenetrable, irredeemable. To love is to be vulnerable.”
― C.S. Lewis

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Hereditary Angioedema and Mindfulness

mindfulnessThese last few months have been rough for me. Despite being in an overall great place mentally, I have encountered a lot of stress between moving states, starting a new job, one hospitalization, road trips to see my family, etc. These things might not be that stressful on my mind-state, but my increase in HAE attacks shows that I am being affected, even if it’s on a level that I cannot notice any other way. For those that do not know, Hereditary Angioedema is a rare and life threatening genetic blood disease affecting about 1 in 10,000 to 1 in 50,000 people worldwide. Here’s an explanation from the HAE Association:

HAE patients have a defect in the gene that controls a blood protein called C1 Inhibitor. The genetic defect results in production of either inadequate or non-functioning C1-Inhibitor protein. Normal C1-Inhibitor helps to regulate the complex biochemical interactions of blood-based systems involved in disease fighting, inflammatory response and coagulation. Because defective C1-Inhibitor does not adequately perform its regulatory function, a biochemical imbalance can occur and produce unwanted peptides that induce the capillaries to release fluids into surrounding tissue, thereby causing edema.

People that suffer with hereditary angioedema often experience many health traumas and major hospitalizations early on in life. Considering this, the potential for generalized anxiety disorder and PTSD are very high. This is an area where there is very little dialogue (at least so far) happening in the medical field. So many of us are used to just having to deal with this disease, even encountering doctors that often misdiagnose us or question what we are feeling. We are used to becoming very strong individuals (I like to think of ourselves as warriors 😉 ) and come up with our own ways of handling the stress, anxiety, and trauma. A whole other can of worms is the tendency for HAE patients to develop a codependency addiction, but I will save that one for another time.

My goal here today is to explore what we can do to survive and heal these moments of intensity in our lives. I have been making the conclusion over and over again, that besides my yoga practice, what keeps me sane is the practice of mindfulness meditation. Psychology Today has a great article on mindfulness meditation and how to practice it. The best and most simple explanation that I have found on the method is from Vietnamese Zen Buddhist Monk, Thich Nhat Hanh. He says:

The exercise is simply to identify the in-breath as in-breath and the out-breath as the out-breath. When you breathe in, you know that this is your in-breath. When you breathe out, you are mindful that this is your out-breath.

Just recognize: this is an in-breath, this is an out-breath. Very simple, very easy. In order to recognize your in-breath as in-breath, you have to bring your mind home to yourself. What is recognizing your in-breath is your mind, and the object of your mind—the object of your mindfulness—is the in-breath…

So the object of your mindfulness is your breath, and you just focus your attention on it. Breathing in, this is my in-breath. Breathing out, this is my out-breath. When you do that, the mental discourse will stop. You don’t think anymore. You don’t have to make an effort to stop your thinking; you bring your attention to your in-breath and the mental discourse just stops. That is the miracle of the practice. You don’t think of the past anymore. You don’t think of the future. You don’t think of your projects, because you are focusing your attention, your mindfulness, on your breath.

img_1289It is that simple. The beauty of this simplicity is that there is no excuse not to cultivate it. The breath is always there so this practice is always available to us. We don’t need some elaborate alter, a fancy meditation cushion, or a zen gong alarm clock. All we need is the breath and the intention to become aware of it. I firmly believe that this is a practice everyone can benefit from, not just people suffering with HAE or any other trauma. When we cultivate more inner peace, we are contributing to the overall peace of the world. And who doesn’t think we could all benefit from that?

Now, for my fellow swell buddies– When do we meditate? Ideally we create a consistent practice for the same time each day, preferably right in the morning. But there are many other times too.

  • Those moments when you’re experiencing airway paranoia. You know the times– “What’s that tickle in my throat?” “Is my airway closing?” “Is this just a sore throat?” “AHHHH Intubation!” I know many people can relate to this, even if some have never had an airway swell. Unless your airway is actually closing, we can all take five minutes to sit and breathe. Another amazing thing about this practice is that we can all experience heightened awareness  and can better determine if this is an actual attack, or if we are just freaking out.
  • The ER. Oh yes. We are all veryyyyyyy familiar with these! Sometimes they are places where we find a true sense of peace, more often than not though, they are really intense and stressful places. Finding the right doctor. Knowing more about your disease than the people who are sticking needles in you. Hearing other people crying or wailing or vomiting. The florescent lights. The constant beeping. Even here we can take the time to pause and connect with our breath.
  • When the insecure thought tangents start. “Will this person accept me when they find out I have this disease?” “Will I pass this on to my kids?” “Am I wrong for passing this on to my kids?” “Am I bipolar because I’m freaking the F out?” “Is it wrong to feel scared?” “Does anyone understand?” Unfortunately this inner dialogue is a side-effect of trauma and a process most of us have to work through. When we take the moment to pause and breathe, we can allow ourselves to detach  from the negative thought stream. We can at least look at them as if they are not us, but just a thought we are having. They will pass.

There are many other times when we can use this practice to our benefit, but we all need to learn to be our own judge of that. I am not perfect. I am not in a place of perfect peace about Hereditary Angioedema. In fact, this blog is coming out of a very long night of an emotional breakdown. I was completely and utterly exhausted and yet, I could not fall asleep. Which starts the very vicious cycle of emotional distress. All the negative thought patterns start arising, the anxiety kicks in, I become upset and cry. Which makes me only fear swelling more to point where I eventually do start to swell. My point in being honest is that these difficult moments will come. Again and again. Breakdowns and pain will happen. ER visits are likely. Wanting to give up will happen. But through mindfulness and learning how to be with ourselves, we can be happier. We can be healthy in many other ways. We can be secure in who we are, and we can cultivate a sense of inner peace.

Living with Hereditary Angioedema is not easy and sometimes we are not always capable of being these amazing and strong warriors. We need to allow ourselves to be supported. We need to take partners that love us and are willing to put up with the antics. We need to take care of our bodies. We need to look at the food we eat as medicine. We need to exercise and stretch carefully. We need to live this life to the fullest. We need to give back an help others. We need to be grateful. And we need our breath.

Dare to Be

When a new day begins, dare to smile gratefully.

When there is darkness, dare to be the first to shine a light.

When there is injustice, dare to be the first to condemn it.

When something seems difficult, dare to do it anyway.

When life seems to beat you down, dare to fight back.

When there seems to be no hope, dare to find some.

When you’re feeling tired, dare to keep going.

When times are tough, dare to be tougher.

When love hurts you, dare to love again.

When someone is hurting, dare to help them heal.

When another is lost, dare to help them find the way.

When a friend falls, dare to be the first to extend a hand.

When you cross paths with another, dare to make them smile.

When you feel great, dare to help someone else feel great too.

When the day has ended, dare to feel as you’ve done your best.

Dare to be the best you can –

At all times, Dare to be!
― Steve Maraboli

 

 

For more information on Hereditary Angioedema and how you can help, please visit the HAEA webiste.

2013: A Year of Lessons

Image2013 has been a beautiful roller coaster of life lessons: ups, downs, broken hearts, open hearts, adventures, tears, love, death, and transition. I wouldn’t classify this year as easy, but worth it? Yes. I would repeat it a thousand times over if I knew I would gain as much wisdom as I have in the past 365 days.

I’ve learned that broken hearts become open hearts if you don’t let yourself get bitter. It truly takes getting everything you’ve ever wanted and then losing it, to know what true freedom is.

I’ve seen my strength and have been surprised, yet again, by my ability to stand strong. It’s only fair that I honor myself here, right? I’ve been through loss, heartache, numerous hospital stays, and I am still going.

Thanks to Carina, I learned that it’s also okay to cry, Imageto say that I am scared sometimes, to feel defeated, and to ask for help, and in doing so, I become stronger than I was before. She also showed me what it means to have someones back and what it means to love selflessly. I swear I fall in love with her more and more everyday. Thank you, bug.

I’ve learned that family really is magic. Whether they are blood or not, these life long connections teach your soul lessons that are eternally priceless– Cherish them.

I’ve learned that I fall in love with my friends more each time I hear them laugh. With every giggle, tear, cuddle puddle, secret sharing hug, I’ve learned that my capacity to love them grows everyday.

“There is nothing I would not do for those who are really my friends. I have no notion of loving people by halves, it is not my nature.” ― Jane Austen

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Even though my best friends are scattered throughout Miami, New York, California, and Australia (to name a few) there is no distance that can lessen that connection.

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I’ve learned that lovers can become best friends, labels don’t mean much, and loving freely makes me feel alive.

I’ve learned that I always want more out of life and the more I ask for it, the more I see. I view this lifetime as a vast playground complete with laughter, scrapes, hiding places, and adventure. I refuse to stop playing!

This year has shown me that nature shares secrets– whether it be the wisdom of the ocean, the whispers of trees, or the stillness of the mountains.

I’ve learned yet again, that humanity breaks my heart and that the darkness of the world isn’t fair, but still, you must choose to see the good. Because of all the turmoil and tragedy, we must love harder, dream bigger, and be softer.

I’ve learned that death never stops being bizarre, or weird, or crazy, or heartbreaking, or sad, but also that it is perfect and inevitable and if you let it, it can make you grow. Thank you, David.

Lastly, I’ve learned to embrace change, that the best is yet to come, heartbreak is unavoidable, laughter is the best medicine (so are hugs), kids are the shit, travel feeds your soul, so does cooking with friends, walks outside can cure anxiety, trusting the universe strengthens your connection to yourself, missing someone is painful but loving them makes it okay, forgiveness is freeing, animals can teach us how to love and falling in love should happen often, surrounding yourself with beauty is essential, and freedom lies within your heart.

Thank you, 2013, for your abundance of lessons. I am forever grateful.

“I hope you live a life you’re proud of. If you find you’re not, I hope you have the strength to start all over again.”

~ F. Scott Fitzgerald