I have always been a shy person. It was not until I started rare disease advocacy work that I began public speaking, and it still makes me nervous. Most of the time I cannot even remember my name when I am in front of people speaking.
I live with indolent systemic mastocytosis (ISM). I was diagnosed in 2000, but prior to that I searched for about 10 years for answers to my symptoms. All I want to do now is to give back to the rare disease community. I want to help other people so they will not have to go through the same problems I met while searching for a diagnosis.
Recently, I was approached by a film company to do a documentary about patients living with rare blood diseases. It took all I had in me, but I said yes! I was out of my comfort zone, but the importance of the documentary outweighed my worries about how I looked or sounded.
We just got through filming last week and it will premiere next year. It was so much fun.
Flights and film slates
The first day we filmed at my house. My living room looked like a stage setting. You should have seen all the equipment the film crew brought into my house.
It was fascinating watching them set up and making sure the sound and lighting was perfect. Yes, they do use the black and white snapping tool called a clapboard. I had to get a picture of me with it.
Follow Tara’s ISM journey. Subscribe to our free weekly newsletter to get the latest news and insights about SM sent directly to your inbox.
While they were here I made them gumbo. They were from California, and I had to show them southern hospitality. They all enjoyed it. They also said that everyone they had met so far in Louisiana was so nice to them. I love that.
Day two we filmed at the airport. They got some great footage of me and the other pilot flying. I had to stop flying in 2004 because of my rare disease. Being back up in the air was so hard on me. I miss flying so much.
On the second day of filming, we also went out to eat and three of my friends joined us and I am so happy that they got to take part in the documentary as well. It was so much fun being out with my friends. I felt so good both days. I was so happy about that. I never know from day to day how I will feel. So, I am extremely thankful for those two days of feeling good.
They were fantastic about the questions they asked and kept me on track. Of course, both days that we filmed I forgot half of what I had wanted to say until I remembered later that evening. But that is how it always works. I was just so nervous.
Worth the worries
A trailer for the documentary will be released sometime in September. I cannot wait to see it.
I know sometimes it is hard to do something that scares you. But we cannot let that stop us, even if we’re nervous or scared. Do not pass up opportunities that might never come your way again.
It took so much to step outside my comfort zone and do this, but it was worth it and I would do it again — because I hope this film will give people hope.
Even though I live with a rare disease, my life is good. I have just been so blessed. There is beauty and joy all around me.
That is why it is so important for me to do all I can to help others. And I still cannot believe they chose me for this.
I hope I did well. I’m praying that I don’t sound bad with my southern drawl. I told them I am so country I sound like cornbread and mustard greens.
Now I will sit back and wait to watch the film and hope I did not embarrass myself. I hope when it is released that you all enjoy it if you get a chance to watch it.
Read more about Tara’s advocacy work: “Becoming the guide I wish I’d had on my rare disease journey”
