MY STORY

A pivot is the pin or the central point on which something balances or turns. – Collins English Dictionary

 

My journey to becoming a food allergy advocate is the result of a series of personal and professional pivots…

 

I was born in Atlanta, GA and am an only child.  My passion for all things dance began at an early age, and I was front row in ballet class by the time I was three years old.  I spent my entire childhood dancing – ballet, tap, jazz, hip hop, lyrical, modern – all of it.   

 

I loved everything about the dance community.  The immediate bond. The strength in numbers. The power of a lot of people working together on the same beat.  The lack of walls or guards – all due to the shared vision of a common goal – our love of dance.

I grew up in the Atlanta Jazz Theatre and danced my way up to the Senior Company.  While there, I participated in numerous fashion shows and industrials with the company as a dancer, model and actress. Later, at the Alpharetta Dance Theater, I also had opportunities to teach and choreograph.  Two professional highlights of those years included roles as a dancer in the CBS Movie “Innocent Victims” and as Kid #1 in the Disney re-make of “That Darn Cat.” I absolutely loved to perform.  

 

However, for a variety of reasons, I knew I wouldn’t make dancing my lifetime career.  So here comes my first pivot -- when I went to college at the University of Alabama, I broadened my options with classes in dance, theatre and communications.  Internships at Turner Broadcasting in Atlanta and Entertainment Tonight in Los Angeles confirmed my love of the entertainment industry. I majored in Broadcast Journalism and truly enjoyed all aspects of television production.  However, I was told that to “make it” on television news I’d have to start working in a very tiny market. Well, no -- I was a city girl. So, I pivoted to the other side of the news – public relations. Upon graduation, I immediately moved to New York City and began my communications career.    

 

Over the next eight years, I worked in public relations with entertainment, consumer and healthcare brands at Rubenstein Associates, DeVries Global and Maloney & Fox.  I specialized in crafting media and brand communication strategies, securing media placements, providing media training and writing speeches for clients. My most recent role was in the Chief of Staff’s office at MTV Networks where I focused on corporate communications.  While working full time, I also completed my master’s degree in Strategic Communications from Columbia University. I still had the opportunity to perform, but instead of in the theatre, I was in the boardroom.  

 

Along the way, I kept up with my first love – dance.  I continued to take classes at Broadway Dance Center and Peridance whenever possible.  I couldn’t quite let it go.

 

During those busy years, I met and married my wonderful husband, Ben.  We had our first boy, Owen, in the city and I decided to take some time off work to stay home with him.  Pivot number three. When I got pregnant with my second son, we decided to leave the city for the suburbs.  We settled into Greenwich, CT, and our son Grayson was born six months later.

 

When Owen was two years old and Grayson was six months old, our world came crashing down.  Within two months of each other, both boys had allergic reactions and were diagnosed with a long list of food allergies.  Owen had a reaction to his first bite of peanut butter and then tested positive for most tree nuts, as well. Grayson had a near-fatal anaphylactic reaction to his first bite of banana and then tested positive for peanuts, tree nuts, wheat/gluten, dairy, soy, egg, most seeds and legumes.  Shortly thereafter, he was diagnosed with FPIES to sweet potato.  

 

During these months, both boys had constant respiratory illnesses.  Grayson had absolutely horrible eczema. At one point his pediatrician diagnosed him with failure to thrive.  We were constantly in the ER. We were terrified about what to feed our children and couldn’t seem to keep them well. The challenge felt overwhelming.

 

But we charged forward.  We went to multiple allergists, pediatricians, GI doctors, dermatologists and holistic specialists trying to find answers.  We spent an enormous amount of time educating ourselves in order to make the best decisions for our children.  

 

During this time, without even realizing it, I first began my role as a food allergy advocate.  Not for the community, but for my boys. I was shocked at the varying information we would receive from different doctors – so many different opinions and such bad habits of over prescribing in response to not knowing what to do to help them.  I had to dig deep to learn about the immune system, allergic response, the atopic march (eczema, food allergies, asthma) and more – way outside my comfort zone – so that I could ask the right questions and make the right decisions.  

 

Over time, we sorted our food allergy life.  We found the right doctors. We moved through multiple food challenges to clarify our list of allergens.  My youngest son did phototherapy for his eczema which helped tremendously. Both of our boys are currently participating in allergy shots which have helped their seasonal allergies, and in turn, kept their respiratory illnesses mostly at bay.  

 

Once we had the boys finally stabilized, we had another blow -- my own health.   The state of complete panic in which I had lived for many years finally took its toll on my body.  One morning in early June 2017, I woke up with a numb sensation in my arms and legs. It was incredibly odd and disconcerting.  Over the summer, the numb sensation would move from my left side only, including my face, and then back to both sides. I had also spent the last three years literally running away from my food allergy fears by cycling like crazy at a spin class 5-6 times a week.  While I felt like I was in amazing shape, the extreme exercise wreaked havoc on my neck, and I began suffering from terrible headaches and having a hard time turning my head left and right. Add to all that the immense anxiety and fear of what in the world was going wrong with me, and I went into a tailspin.

 

I spent the summer seeing at least a dozen specialists – so similar to what I had done for my boys a few years earlier -- desperately looking for answers.  Multiple internists and neurologists said I was fine. An enormous amount of bloodwork came back normal. Several different MRI scans also came back normal.  But I literally couldn’t feel my arms and legs, my anxiety was skyrocketing, and I was getting physically weaker by the day.

 

I ultimately ended up in the hospital for five days late that August.  I was mis-diagnosed with inflammation of the spinal cord and treated with an enormous amount of IV cortisone.  Unsure of my diagnosis, I sought other opinions in New York City and Los Angeles, and finally got to the bottom of my issue.  A brilliant neurologist diagnosed me with an autoimmune reaction to an infection (a wicked sinus infection that previous May).  She said I would take a year to recover, but that the numb sensation (the autoimmune reaction) would fully go away. A year. 

 

Here’s the kicker: my doctor said that my body reacted this way because it was STRESSED.  

 

ALL. THE. TIME.  

 

And this leads me to explaining my biggest pivot: a complete and total life change.  I realized that I was operating out of fear. All the time. I was expecting the worst.  All the time. My body was literally seized up in anticipation of something awful about to happen.  All the time.  

 

And my body just gave out on me.  

 

Thanks to the help of an incredible functional medicine doctor, I set myself on a new path.  I began therapy with a genius woman. I worked through lingering PTSD from watching my son’s first near-fatal anaphylactic reaction.  I learned how to understand my brain and anxiety and that I could talk back to myself and change the conversation in my head. I cried and yelled and felt all the anger and fear about this diagnosis for my children until I literally just got it all out.  

 

I also worked on my body.  I went to physical therapy to work out the damage I had done by over-exercising.  I went to Myofascial Release Therapy to help my body unwind from all the years of holding on too tight.  I gave up crazy spin classes for walking outside and practicing yoga.

 

I also learned to say NO.  My husband and I made a new family motto – if it’s not a HELL YES, then it is a NO.  I cut out all the unimportant social stuff. I learned how to set boundaries to take care of myself.  I put my health and my family first and everything else went way down the list. I took a year to just come inward and heal.  A year.

 

Along the way, I had one very powerful acupuncture session where I had an incredibly vivid message to LET GO OF EXPECTATIONS.  I had all these dreams for my life and my children’s lives, and it seemed we were going to live in a cocoon in order to keep them safe from their food allergies.  I was angry that food allergies happened to us – it all felt so unfair. And more than anything, I was terrified. It took a lot of time and effort, but once I was able to fully accept that this was our path, I was better able to take care of my children and of myself.  

 

On the first session with my therapist, after hearing me talk for a full hour, she told me that one day I was going to look back on this time in my life and be glad it happened.  She told me that one day it would become MY STORY – the story of how I survived it, learned from it and became stronger for it. She said that one day my story would help others on their journey of healing.  

 

I couldn’t believe it at the time.  But she was right. And that whole journey is another reason why I am so happy to have the opportunity to be an advocate today – not only for food allergies, but also for wellness and self-care.  Her proclamation was my North Star during my year of recovery, a signal of HOPE that I might one day be on this side of my trauma. Recovered. Healthy. Strong. And able to share my story to help others.  I could not be more grateful.

 

As mothers do, even while ALL of that was going on with my children and myself, I jumped head first into being a part of this incredible food allergy community.  You see, it’s not that much different than the dance community I grew up with and love so much. The immediate bond. The strength in numbers. The power of a lot of people working together on the same beat.  The lack of walls or guards – all due to the shared vision of a common goal – our love of our children.  

 

I am honored to be on the FARE Board of Governors and to serve as a member of the Patient Advisory Board for DBV Technologies.  One of my favorite aspects of my work is providing the Voice of the Patient – the real truth behind living with food allergies – at speaking engagements and to interested organizations.  Highlights have included participating in panel discussions at JP Morgan and with Genentech.

 

My broadcast news experience has been helpful in my live television interviews about food allergy topics at NBC-CT and FOX61 CT.  I have used my public relations background to fundraise, gain numerous local media placements for and speak at FARE events. I co-chaired the 2019 and 2018 FARE Connecticut Luncheons, and was honored along with my fellow Food Allergy Mama Julie Karish at the 2017 Luncheon for our fundraising and publicity efforts for the 2014 – 2016 FARE Walks for Food Allergy.  I served as the Public Relations Chair for the 2016 and 2015 FARE Walks for Food Allergy in Fairfield County, CT, and the 2014 FARE Walk for Food Allergy in Westchester, NY. I was also the Communications Chair for Food Allergy CT, a FARE-recognized support group, from 2016-2018.  

 

When I look back now, I see that every pivot I made brought me to where I was meant to be.  I desperately wish my children didn’t have food allergies. I wish no one had food allergies.  But at least this mama can try to make it better – professionally and personally. I am grateful for each turn in the road that led me here.  

 

In dance, a pivot turn (or simply pivot) is a general classification for dance turns in which the performer's body rotates about its vertical axis without traveling.

 

Last but not least, I pivoted right back to the beginning and recently returned to the dance studio.  One of the most important things that I lost along the way but have happily reclaimed is JOY. I was so focused on keeping my children alive and well that I forgot to LIVE MY LIFE.  I want to set the example to my children that they can achieve ANYTHING – and that food allergies can NOT bring us down. Food allergies are just a small part of their BIG story.  

 

I was beyond surprised and ecstatic to be reminded of how much I truly love to dance and how much it is at the core of who I am.  I recently began teaching again – a class called Dance It Out® created by the incredible Billy Blanks, Jr. – and can’t wait to see where this road takes me.  

Thank you all for reading.  I look forward to working together to make the world a safer, more joyful place for our children, while we hope and pray for a cure.  

 

“Pivoting is not the end of the disruption process, but the beginning of the next leg of your journey.” – Jay Samit 

About Me

Hi, I’m Hillary!  I’m a former corporate communications professional turned Food Allergy Mama and Advocate.

 

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