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 🙂 

I Pledge Allegiance to the Flag

When I hear the word “family” I experience a flash of warm feelings. Gratitude, acceptance, love, and open-mindedness are all qualities that my biological and extended family possess. Considering that the majority of my family resides in North Carolina where the words republican, homophobia, and religious are thrown around with pride, I’d say that I’m pretty darn lucky. Unfortunately this is not the case for many homosexual (we all have to label things nowadays, don’t we?) people living in conservative places throughout our country and all over the world.

I got a phone call from my father who lives in a small town mountain city in Arkansas yesterday evening while I was driving. “Do you have a second to talk?” my dad asked. He seemed emotional. I immediately was overcome with worry. It sounded serious. Someone died, I thought. “Of course dad, what’s up?” I asked. “When I was in my senior year of high school, living in Seoul, South Korea on the American military base…” I already knew where this was going. I had heard this story countless times before. You see, my dad is someone who will enthusiastically tell the same story over and over. I never stop him because no matter how many times I have heard them, they never fail to captivate me. “…we used to have to have to recite the pledge of allegiance every morning. My two friends and I did not stand up. They called all of our parents. No one could understand why we didn’t stand up! And when we explained that it was because of the last line of the Pledge Allegiance ‘freedom and justice for all’, they still didn’t get it. ‘Our best friend is black, and we wouldn’t stand up because he doesn’t have the same rights as us’ they didn’t know what to do.”

The whole time that I am hearing him express this story with as much earnestness as if it happened yesterday, I have a smile on my face. These defiant, humanitarian, activist qualities were all traits that passed on to me. It has gotten me in a lot of trouble, especially in school, but it is something that I am most proud of.

“I want you to know that if I had to rise and say the Pledge of Allegiance today, I wouldn’t stand because of you.” My eyes got watery. I know that my dad is accepting of my “homosexual” relationship. I quote homosexual because even though I am in a relationship with a woman (a very amazing one at that!) I don’t like using labels. I like to say that I am just attracted to awesomeness is people 😉 . It makes me emotional not only to hear once again that I am supported for just being me, but also for all of those that aren’t as fortunate as I am.

Lesbian, Gay, Bisexual, and Transgender youth are four times more likely to attempt suicide than their heterosexual peers. Studies show that LGBT youth who are rejected by their families are 8.4 times more likely to attempt suicide; however, all it takes is one ally to dissuade high-risk youth from attempting such a horrendous act.

Please support your local gay-straight alliance and the young members that are struggling in your community. Visit the GSA Network website to discover how you can get involved. You never know whose life you could be saving.

Writing about LGBT activism is something that always comes easily for me, but never without intense emotions. I am so incredibly thankful to have such a loving, accepting, and inspirational family. I recognize that sometimes I can take it for granted, nonetheless, I am forever grateful.

Happy coming together 😉

I pledge allegiance to the flag of the United States of America, and to the republic for which it stands, one nation under God, indivisible, with liberty and justice for all.