LIVING with HHT: how Yoga saved my life

I want to make clear that this posting is not about trying to get anyone to do Yoga, although that would be a plus, for I don’t believe we could have any greater failure in our health care system than to apply one method of healing to all humans. It is to share my story, and reach out to my human nation in hopes of inspiring and healing.

I have debated heavily in the past about “coming out” with my disease (in yoga, any disease is described as dis-ease), HHT, which has taken over my life in times in detrimental ways, mentally and physically. I never wanted it to define me. What I have come to realize recently is that; it does define me in a certain way, and that’s ok. I have recently had to leave my job being a full time wilderness therapy guide due to my symptoms creeping back up steadily to the point where I got ten nose bleeds in one day; my body is being called back to practice and teaching, and I must listen. In this time I have come to realize I have something very special I can share and help others with, so here is my beginning on that path.

A little about it, HHT (Hereditary Hemorrhagic Telangiectasia) is a genetic mutation that 1.2 million people in the world suffer from. Those who have it create more blood vessels than capillaries, which are the little things that keep the veins connected, therefore, we bleed internally and externally to varying amounts depending on the severity that the person has it. I found out I had it when I was 23 years old, when I ended up in the hospital for a nose bleed that wouldn’t stop for a week, and a bunch of red spots (open veins) appeared on my skin. For most, it doesn’t show up until adolescent or young adulthood. Those who have it usually end up on blood transfusions their last couple years of life, or die suddenly of an aneurism at any point in life. It is also so rare that very little research has been done, and there is no way to diagnose in the United States other than if two family members have it, and you have symptoms.

Suddenly, it all made sense. My grandmother always on blood transfusion cords when I was little, and all of the bloody tissues in the bathroom from my father as I was a child made sense. It is, an ugly, nasty disease that can take over your life and for those who have it, end it sooner.

I went into a very dark place after finding out for a couple of years. Crying on the phone to my mother even saying I wish I wasn’t born. I couldn’t function or go anywhere without getting a nose bleed in the public anytime I bent over. I was a personal trainer and I couldn’t even go to work, let alone pay attention at school.

I found Zen meditation while living in Bakersfield, California, and was able to get back into my university schoolwork and train again. I thought, hmm, is this related? I thought I knew the human body so well, going to school for biological anthropology, nutrition, a masters in health care, and being a personal trainer for eight years! I reluctantly resigned that idea, and had my first true Ego death. Realizing the idea of life being much greater than I, I kept on with life; trying to manage the best I could and hide my fears and insecurities of my disease.

Dwi Pada Viparita Dandasana

While at UNM doing forensic research, I committed myself to practicing Yoga every day for about three months, and my symptoms went away completely. There was a deep calling inside of me to pursue this ancient practice and gain deeper knowledge of the profound effects on my mind, body, and soul. I signed up for a Yoga teacher training in India, in Astanga Yoga, and my life was forever changed.

My philosophy teacher, Keshiva, boldly said to me that it was my Karma that I was born with this disease. Naturally, at first, I was appalled and stayed after class to talk about philosophy for an hour hoping to ‘win’, but eventually withdrew to my room in the Ashram to cry for hours. I struggled with this idea for some time, until I was in a class about a year later after Yoga school when a teacher said, “Everyone who is truly drawn to Yoga, is drawn to it as a calling, it is a blessing.” Jai! Bam! Whack! It hit me again.

“Practice, and all is coming.” – Sri K. Pattabhi Jois (1915—2009)

This practice, Patanjali Yoga, has made my life livable, loveable, joyous, and also sad and accepting at the times I have needed. It is a practice not only of accepting that everything is Brahman (the source of all knowledge; that is, everyone and everything is Brahman), but also the eight limbs which provide moral codes of kindness, discipline, love, service, physical well being (Asanas, this is the physical practice that most in the USA know as Yoga), pranayama (breath, life force), and the ability to feel whatever is without judgment.

Yoga Sutra 1.4 : Vrtti sarupyam itaratra

At other times, the seer identifies with the fluctuating consciousness. (More simply said…)

When the seer identifies with consciousness or with the objects seen, he unites with them and forgets his grandeur. The natural tendency of consciousness is to become involved with the object seen, draw the seer towards it, and move the seer to identify with it. Then the seer becomes engrossed in the object. This becomes the seed for diversification of the intelligence, and makes the seer forget his own radiant awareness. When the soul does not radiate its own glory, it is a sign that the thinking faculty has manifested itself in place of the soul. –A translation from Light on the Yoga Sutras of Patanjali, by B.K.S Iyengar.

When I don’t practice not only does my health fall apart and I cannot function, more so, I forget that there is something at work here much greater than I. I am blessed to have found this practice, this discipline.

I hope this posting finds you well and can help be a guiding light or beacon of hope for you, whether you are just having a bad day, or suffering from a disease yourself. If this article finds anyone with HHT, I know what it’s like to be reminded of a shorter life every time you get a bloody nose or see your red spots in the mirror. I know how dark this can be and intrusive of the life you “want”. Never give up. I hope to see you at a Yoga retreat that I will be offering for those with it.

If I could close on any one word it would be this: trust.

For more on HHT, a heightened awareness, or seeing how you can help, please visit:
http://www.hht.org

Blessings and Namaskar,

Cori