Claire Cullipher: I am not my disease
Updated: Mar 27, 2019
You had an adventurous childhood!
Yes, I was born in Canterbury England...to this day I still carry a British passport. I have lived in the States for most of my life. My older brother and I went to Charlotte Latin. I am from an English football stock. I grew up always playing sports; two places I felt at home were on the field and on the stage. After high school, I attended College of Charleston, did a summer study at the Royal Academy of Dramatic Arts (Shakespeare Conservatory, London). I eventually transferred to Appalachian State University - due to my love of mountain biking. I then took some time off and moved to New Zealand where I pursued modeling and acting - which I had begun at the age of 15 in Charlotte. After all that, I moved back to the States and…eventually I grew up.
How did you overcome your eating disorder?
Even though I grew up being athletic as hell, I also modeled. At the age of 15, I developed an eating disorder. It took weighing 114 lbs at 5’11", sitting in an eating disorder clinic, and learning I was three months pregnant (my son will be 15 in April...he saved my life) to overcome my eating disorder. After my son was born, I still struggled. I discovered yoga when I was pregnant and have now been teaching 13+ years.
What are the three things that anchor you?
My son McDade (we call him Monks), my yoga mat, and any bike - the quiet Fixie bike makes me smile.
How does 24 Hours of Booty connect you to your late father?
For the past 11 years (about to be 12), I have taken part in 24 Hours of Booty (24 Foundation). I started riding in 2000 when I lost the man who I thought hung the moon and set the sun.
At the same time, my dad lost his 18 month battle with leukemia. My dad died without seeing me beat my eating disorder or meeting my son. The time I spend riding around the Booty Loop is time with my Pop.
Walk us through your Acromegaly diagnosis:
Last year after several years of many ER visits, I learned I had a pituitary tumor (no biggie, yank it out and let’s call it a day). Unfortunately the tumor made me develope a rare disease (chance: 40 out of a million). Acromegaly: results from excess growth hormone (GH) after the growth plates have closed . The initial symptom is typically enlargement of the hands and feet. There may also be enlargement of the forehead, jaw, and nose. Other symptoms may include joint pain, thicker skin, deepening of the voice, headaches, and problems with vision. Complications of the disease may include type 2 diabetes, sleep apnea, and high blood pressure. If you look it up, it is terrifying. Andre the Giant had it. There is no cure. It causes exhaustion and crazy fatigue.
What has treatment been like?
Since June 2016, I have had brain surgery (two weeks later I was back teaching spin classes - I missed my students), radiation for six weeks (three weeks in, I completed 24HOB and kept teaching). Unfortunately, the treatments have yet to work. Twenty-five percent of the tumor is still wrapped around my carotid artery and my left eye. I can handle that...just keep pushing forward. During this time (sad...but true) a recovering anorexic's nightmare came true: the disease also makes your ribs grow and with that gain weight. I have spent most of my life modeling and being in the fitness industry. I truly adore teaching my students. Through all of this, I am a hell of a lot bigger, more appreciative, and have a true understanding of how a chronic incurable disease can rip away one’s self worth and power.
I will never be 114 lbs and 5’11" again; I was anorexic then and (even then) fighting a disease (an eating disorder). Acromegaly gradually makes a person’s face change. My greatest fear is that I will no longer look like my mum...and it wouldn’t be obvious my son and I are two peas in a pod.
What have you reflected on and how have you empowered yourself?
I am not going to lie, I lost friends, a job I loved, and my false reality! I found friends who I now consider family. I embrace how my yoga teaching can reach more people and that I am so much more than pages in a magazine, my weight, or a walk down a runway. I am a woman who will ride a bike to celebrate her dad for 18+ hours while wearing a duct tape skirt and pigtails. I am a woman who loves making people smile and help them through their struggles. I am a woman who shows up on her mat; less than a 18 months ago, I was in photoshoots for yoga postures and now, I show up and have to relearn. Acromegaly slowly takes away your muscle mass: I used to show up on my mat and feel strong. Now, I show up and realize I am going to be one hell of a teacher after all of this.
I could tell you that my family and friends walk on egg shells about my changes. I believe my two best friends sent me photos of Stretch Armstrong when I told them what was wrong with me. My son loves to yell ACROPOWER when I can reach something. To add to that fun, I have neurocardiogenic syncope (pretty damn common). In other words, this kid can pass out like a ton of bricks when I stand up.
How are you giving back to yourself, as well as others?
All of this has motivated me to always laugh! I tend to joke a lot. Most importantly, it has motivated me to become part of the wellness protocol with those going through radiation, chronic disease, and eating disorders. When it is all said and done, we all want to wake up without pain and be a productive person with a purpose.
I want to remind folks with chronic illness they are not their disease. They are the vibrant and kickass soul who sometimes starts to hide. More than anything, I want to become an advocate for living a kickass life! I don’t care what you are or were; we all deserve to live a life of purpose.
I have had amazing opportunities working with women and teens in recovery for eating disorders. Over the past year, I have also begun to give talks about finding the humor and joy in life, even when you are getting nothing but a negative push back. When my doctor told me about my tumor and brain surgery, he asked if I had any comments and they were as follows: 1. His name is Tyrone (my tumor) 2. Double birds to Tyrone!
Let’s be honest, we all have a Tyrone! He might be mental or physical, but I am here to help you embrace the double birds and understanding that he ain’t got nuthin’ on your spirit.