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

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

Hereditary Angioedema and Mindfulness

These 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.

It 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.

Confronting Unresolved Fears: Taking an Honest Look at What Scares the Shit Out of Me

It has been a while since I’ve written with the intention of it being read publicly. I’m not even sure of what my intentions are at this point. To be honest, my heart is pounding as I sit here attempting to hash out my thoughts. My hands are shaking slightly, as they always do now. I feel very alive in what is coming up.

It has been a very long time since I’ve allowed myself to be alone. Alone in the sense of being on that journey through self discovery- shaking hands with your inner demons, laughing at your flaws, exploring the essence of who you really are… Being in a relationship for four years served as a buffer, in a way, between me consciously tackling these underlying and necessary experiences. I’ve always been overly aggressive with the way that I have chosen to battle uncomfortable situations within myself. I think it’s one of my greatest strengths, but it has also gotten me into a lot of trouble.

Living with Hereditary Angioedema has become so normal to me at this point. The UPS man just walked in with a months supply of my plasma treatments, and I don’t think twice about it. I don’t fear death like I used to. In a way, I am completely comforted by the fact that I could go at any time- it has taken me a very long time to get to this point. I feel amazing in my physical yoga practice right now; something has recently clicked in me where I have the ability to genuinely surrender to what my body is capable of doing. Fears of airway obstruction don’t come up like they used to while I’m practicing. In terms of me I feel great.

What I am not okay with, is the fact that there is a 50/50 chance of passing my disease on if I choose to reproduce. I have always known this and I thought there was a time when I was actually content with that… I’m seeing now that I am not. Every part of my being has always wanted kids. Not now, of course, but I’ve always known I would eventually. Insecurities, fears, and an immense amount of sadness are smacking me in the face right now. I don’t feel alright about being responsible for another being having to live with an incurable disease. And the thought of not having my own biological kids is very painful, even if it is selfish. What if someone wont want to have kids with me because of this? What if I never have kids? What if I fail at the most basic human goal in life? These are the fears floating around in my mind. It almost makes me laugh seeing them typed out. Right now I don’t have the security of someone reassuring me that it is okay, acceptable, and perfectly fine to have kids or even just feel this way. I am alone in the way I feel. In a strange sense, these fears feel fluid. They don’t feel like something I need to fight against, just something I need to process.

My happiness right now comes from my actions in the world. I am truly happy because I am surrounded by realities that I have created. I live for stoking people out and the thought of one more person being happy, successful, or having a better day because of something that I am able to do, truly makes my heart sing. So it’s interesting for me to be straddling this duality of emotions. I believe that if you don’t have intense waves of fear than you aren’t really living. And right now I feel very alive. Over and out.

You feel your strength in the experience of pain. It’s all in how you carry it. That’s what matters. Pain is a feeling. Your feelings are a part of you. Your own reality. If you feel ashamed of them, and hide them, you’re letting society destroy your reality. You should stand up for your right to feel your pain.

-Jim Morrison

When Something Clicks

The body has the incredible ability to reveal truth and accuracy… if you know how to catch it. I am extremely sensitive when it comes to feeling emotions. I really feel them. When I hear a statement that resonates with me on a deep level, I immediately have physical affects: I get tingles down my spine, the hairs on my arms stand up, and often my eyes will get watery. When this happens I know that something has rang true for my whole being; subconscious, waking, intellectual, emotional, the whole nine. If I catch this happening I know I need to jot down what I heard and save it. God knows I’ll dissect the hell out of it later.

I believe that it is easy to confuse agreeing with something and experiencing the phenomenon of true resonance. Similar to  when you hear good music; a Led Zeppelin masterpiece, David Bowie and Queen’s Under Pressure, whatever that is for you, something happens within our being that is beyond thought. It is more than just thinking “I love this song!” or “I really like what she just said”. It’s a remarkable sensation that very clearly says this is right. Something clicked. I believe it is in these moments that we can discover our creative potential, make the clearest decisions, and discover our truth.

I had the privilege (I’ve sure been using that word a lot lately!) to participate in a two hour segment of an Ashtanga yoga workshop with Greg Nardi last night. Greg is one of the original cofounders of my favorite yoga studio and my proud place of employment, Miami Life Center. I first practiced with him when I was fifteen and only did so for less than a year. It was within that short period of time that I was deeply touched by his humble teachings and intuitive insight.

During last nights session, I continuously had the aha! moments where something clicked.  I would sit up a little straighter, the goosebumps would start, and I’d take a deep breath. All those actions happen without instructing thoughts, at least on a conscious level. They just are. If I catch this experience I then know in my mind that this is something that needs my further intention… there’s still work that can be done.

One thing in particular that profoundly clicked for me last night was Greg’s definition of yoga. “Yoga is learning to see things as they really are”. He said it with such love and honesty and allowed for a long pause. Goosebumps. Even writing it makes me experience the same sensations. My whole being is saying YES! to this statement. So not only am I choosing to jot it down, but I am writing an entire thought-scattered blog about it.

Yoga is learning to see things as they really are. The bending is nice. The acquired strength is great. Improved health and state of being is fantastic. But really it’s not about that. It isn’t about the physical plane, at least that is my humble opinion. It is about our own individual and personal journey through self discovery, for lack of a better term. It is with long dedication and perhaps a bit of quietness that we can embark on the road to clarity, to rediscovering our true selves, to seeing things  as they really are.

When something clicks, it’s important to catch it, to pay attention to it…to dive just a little bit deeper into it. You never know what truth you’ll discover.

Good luck dissecting my arbitrary thoughts, I promise I had goosebumps the entire time! 😛 Visit Greg’s website for more information and to keep up with him and his husbands travels through India and Southeast Asia. For more information on upcoming workshops with world renowned teachers, check out Miami Life Center.

Let’s Get Personal: My Disease, My Practice, and Learning To Breathe Again

We all have those things that get us. Traumatic past experiences, stress, memories… Such simple things can make the walls of our security come crumbling down. I find writing in these most intense moments can help ease the chaos. Chaos that isn’t necessarily real. Isn’t it ll about switching your perspective to be more positive? I can see where this can become more like a journal entry than a blog, but I’m choosing to go with it anyway.

I have a crazy genetic disease called Hereditary Angioedema. My father and all my five siblings have it. It’s actually quite fascinating- we’re one in fifty thousand in the world with it which means it earned its right to be featured on an episode of House 😉 The gist of it is basically that we all lack or have a malfunctioning version of the blood enzyme that counteracts swelling. These lead to “attacks”. Without treatment, attacks last three to four days in one specific usually isolated area of the body, such as the hands, entire extremities, face or the airway which can be fatal.

I’m experiencing an attack at this moment in my right elbow. Before I decided to take a moment and reflect, I felt myself going to that unclear space in my head where all the mental chatter goes on. I experience intense emotions of resentment for having this disease, I believe that my entire day is over, and that basically I suck. Then I finally come to a place of calm, which I actually found as I started writing, where I realize that it doesn’t have to be so dramatic, that I can still have a good day, and that within a few hours of giving myself my treatment, the swelling will most likely go down- instant relief.

This disease has been such an incredible learning experience for me. The onset of Hereditary Angioedema is usually between the ages of 15 and 20, which means you have to learn to cope with it during some of the most intense and vulnerable times in life. My first airway attack happened when I was eighteen which is about two and half years ago now. Thankfully, the stars were alined in a perfect way- I was able to get to the ER of Mount Sanai just in time to be intubated and medically induced into a near coma for 6 days until the attack went away.

The aftermath was the biggest struggle. After coming home from the ICU, I had lost almost my entire body strength. I couldn’t walk in a straight line, take a deep breath, or remember something that happened two minutes before. It was a very long recovery that lasted almost a year. One of the most tragic struggles for me during this time was the “loss” of my yoga practice. The idea of attempting synchronized breath with motion would make me burst into tears. Yoga was something that was so sacred and special for me for such a long time and it was physically impossible for me to attempt.

It was a little more than a year ago that I started to get on the mat again. I constantly faced the struggles of being too weak, not flexible, tight, cracking joints and having to breathe. In Ashtanga yoga, we do something called Ujjayi breathing as we practice. In kids yoga we call this Darth Vader breathing because the sound of restricted breath sounds just like Darth Vader. This breath basically happens by moving the glottis as the air passes in and out, allowing the throat and the airway to become narrowed. Just this act alone would send me into panic, as it was so close to the sensations that I was experiencing before being intubated. I had a negative memory linked there so my initial solution was to avoid Ashtanga yoga all together.

Somewhere in the last six months I have found the emotional ability to return to Ashtanga yoga. I have a very humble practice based in the primary series, where I am steadily building strength and relearning to connect to the Ujjayi breath. I don’t experience the same panic as I did before, although my thoughts still go there from time to time.

As it always is, yoga is a practice where you learn, grow, and flourish and that is exactly what I’m experiencing now more than ever. Initially when I sat down to write, I had a negative view on my “situation” and I almost let my day get ruined because of it. Now, after writing through this process, I feel a huge sense of gratitude and motivation to just keep going. I hope that anyone who reads this can gain some inspiration to learn and grow.

I find the symbolism of the Lotus flower can best embody what I’m feeling right now. Buddhists.org offers a great explanation on it:

“The mud represents an importance in the meaning of the lotus flower in Buddhism. All humans are born in a world where there is suffering. This suffering is a vital part of the human experience; it makes us stronger and teaches us to resist the temptation of evil. When we banish evil thoughts from our mind we are able to break free of the muddy water and become one with the Buddha. The mud shows us who we are and teaches us to choose the right path over the easy one.

Finally, the lotus flower represents rebirth, both in a figurative and a literal sense. The rebirth can be a change of ideas, an acceptance of Buddha where there once was none, the dawn after one’s darkest day, a renaissance of beliefs or the ability to see past wrongs. In a literal sense, the meaning of the lotus flower in Buddhism represents rebirth as a reincarnation, such as in the Buddhist religion, when a soul leaves this world in its present form to be reborn in another.”

Happy rebirthing 🙂 

Yoga Through The Teenage Years

 Oh the teenage years. It’s a time for fun, learning, and getting to know yourself… and perhaps a little awkwardness. Just writing that puts a smile on my face. For most people, thinking of being sixteen sends us to a lovely and nostalgic place; first loves, first screw-ups, first road-trips… a lot of firsts. It can also be a time of immense difficulty. Anyone who says it wasn’t hard being a teenager, surely had it easy. Your hormones are raging, there’s never enough sleep, and school sucks (but hey, don’t you miss it now 😉 ?).

I guess you can say that I didn’t have a very normal teenage life. When I was fourteen, I left school because of increasing anxiety; I just couldn’t handle it anymore. No one was themselves, I had no idea who I was and it was driving me mad. Every morning before class would start, I literally had the sensation that I was suffocating. Being raised by a hippie, yoga teaching, buddhist-ish mother, who was already pretty against the public education system, getting out of school was not an issue.

Within two months of a lot of rest and a lot of learning, I enrolled in my very first yoga teacher training course. This was definitely the most significant experience of my life up to that point. Everyone was older than me by at least a decade but I still managed to develop strong bonds with almost all of them. They became a part my family, something that was so valuable for me at that time. My body went though crazy changes. I began to build strength and flexibility that I never imagined was possible. I also had a new sense of self-esteem and awareness. However, the challenges of being a teenager didn’t just disappear. I still struggled with school-work, getting enough sleep, and being organized but since I did have a positive self image, the challenges became less of a big deal and more of a lesson.

By the time I was fifteen, I was teaching four classes a week, and had traveled Europe with money I had saved from teaching and baby sitting. I went to high school only for my junior year. Through out this entire time of many life challenges and experiences, I always had my mat to run to. Like I wrote in my previous post, your mat becomes a haven. A place that you can turn to no matter what the outward circumstances are. In Ashtanga yoga, it is said that one of the reasons why we do the same poses everyday is to see the ways in which we are different. This is something that is extremely valuable in our ever-changing, random teenage years.

Since yoga is now a fad, you don’t need to worry about being made fun of for doing it! Many public schools and local gyms now offer yoga and usually offer  discounts to teenagers or students. So if you want a better life, more strength and flexibility, and an overall smoother high school experience, get on the mat now!

Happy growing 😉

Check out my very first Ashtanga teacher that I practiced with when I was fifteen!

Getting On The Mat

What makes up who we are? Is it learned qualities that stick with us after a period of time? Or is it predestined traits that have stuck with us through lifetimes? I was sitting in my therapists office on Lincoln Road. After expressing to her that I was having ongoing issues with commitment to my yoga practice, she asked me “Where do you feel this ‘issue’ with your practice stems from?” Without hesitation, I began to go in to my “story”. You know, the one we’ve all invented for ourselves to justify our actions or make us feel safe? “Well, I’m a very lazy person and,” “Who?” I didn’t expect to be cut off…”Who what?” I asked. “Who says that you’re a very lazy person?”

That simple question really struck a chord with me. It’s a very realistic question- Who says I am a very lazy person? I do. It hit me like a smack in the face. I mean, I’m all about self examination, constantly questioning things, always staying challenged. But somehow such a simple phrase “I’m lazy” became wired into my programming over my life’s journey without me realizing it.

It is so easy to find an excuse to keep you from doing your practice, whatever your practice may be. I choose to make my practice yoga; which is why the statement “getting on the mat” works for me. When I hear the mental chatter come up about all the reasons why I don’t want to practice, I choose to just “get on the mat”. Learning this dedication begins to make your yoga practice a sacred journey. Your yoga mat, that little, rubber, rectangular, space becomes a haven that you can come to at any time. It’s a place to feel safe, a place to feel challenged, and a place to grow.

Part of realizing the way this works is falling off the path. Forgetting your practice, avoiding it, finding things that are “more important” and then realizing once again that answers come when you just get on the mat. You just choose to go there anyway.

I want to inspire anyone who reads this to create a practice for themselves. Whether it be yoga, walking, dancing, or swimming, just do it. 

From the video Everybody’s Free To Wear Sunscreen: “Do one thing everyday that scares you”… happy adventuring 😉