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 🙂 

12 thoughts on “Let’s Get Personal: My Disease, My Practice, and Learning To Breathe Again

  1. My beautiful Juju,how GREAT you are by sharing your experience of your disease. I can imagine all the stress that could cause you. But the way you take it as a way to grow is amazing. We are all in this suffering existence, but once we know that from those experiences that seems chaotic, we can learn and transforme it into something positive then there is no problem that we can’t resolve.As your example of the LOTUS.
    You are a very special person who gives alot and I am one of those people who could tell you GRACIAS for being in my way.
    I love you and I am here for you.

    1. wow Patricia, thank you so much for your beautiful words, you made me cry! If anyone get’s remotely touched by what I have to say then my job is fulfilled. xoxoxoxoxo

  2. Thank you for sharing your personal story in such an open and honest way, that in itself shows your trusting yourself and this wonderful ride we call life, it is an indication that you are aligning yourself with love rather than fear. I cant begin to imagine what it must be like to live with your condition and admire your courage, strength and faith. I think whatever our beliefs may be, there is some kind of, for lack of a better word, order to it all, it is not chaos, and when we remember and align with this order or flow, the “why me” transforms into a recognition of a story that has made us evolve and wake up. I have never lived anything on the level you have, but I know from my own experience that it is through the hard stuff that we grow and learn to truly empathize and connect with our fellow man and woman, and truly become grateful and Alive ! I didn’t know you had gone through this and I now feel like I know you more 🙂 much respect.

  3. Wow, reading this entry was powerful for me. I really feel how the simple act of breathing in and breathing out was radically shaken by that attack. I thought I could understand it but I didn’t really get it until now. It was such a traumatic time for you. I’m so glad to hear how you are able to process through some of this now.

    My process of this time is still happening as well. I find my mind re-living those 6 days, sometimes in dreams, sometimes I just think myself into a state of worry about the whole thing. Maybe because of the move and realizing that you aren’t just in the next room anymore. Or maybe it’s just the way it is supposed to process. Not sure.

    A difficult thing for me, and a memory that haunts me is the image of your hands tied down to the side of the bed. The breathing tube was made for an infant (it was the only one that would fit) and they couldn’t risk you accidentally pulling it out in your near coma…

    As I write this, I realize that this isn’t something I can easily discuss. Maybe in another way, maybe we can put it all down somewhere safe and share it and process it that way.

    Either way, I am so grateful for the practice that keeps me centered, helps me when I fell unsteady, and shows me the strength I know I possess inside. I will ‘get on the mat’ again in the morning. What a gift that practice is!

    I love you my darling! Thanks for your blog!!

    1. I can’t begin to imagine what it was like to experience that time as a mother on the outside. It’s a different kind of tragedy. Today I’m grateful and learning from it now more than ever. It’s not panic stricken thoughts that come up when that time wanders into my mind… It’s more curiosity and wonder. I think a lot. Feel a lot. And more than anything, I really just feel inspired to learn. I love you, ma ❤

  4. Here’s another description of the lotus … the trusting heart that offers no resistance … read that today ❤

  5. Thanks for the powerful share. I too have HA and was put into a coma for 9 days. It took 5 hours to vent me due to the severity of the swelling. Evidently estrodiol triggered my first attack and I came back a somewhat different person with severe memory troubles and much more. My Mom had to bring me back from the coma…Your positive attitude rocks!

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