For this installment of #WCW we are “crushing” on one of our own advocates and tutors, Jessica Sanborn, because she is the picture of living a healthy life in the face of Cystic Fibrosis. Our advocates practice what we preach of self-advocacy, triumph through adversity and teaching and advocating for students with similar paths.
When were you first diagnosed?
When I was about seven, I was diagnosed with bronchiectasis and it was discovered that I was a carrier for Cystic Fibrosis. After multiple tests that were inconclusive, it was determined that I did not actually have the disease. About 20 years later, while I had pneumonia, I was diagnosed with a Mycobacterium Avium Complex infection and thorough advances in genetic testing, I tested positive for a specific mutation of Cystic Fibrosis that was hardly even known about at the time of my original diagnosis.
What is the treatment for your condition?
Since I was a child, I have had multiple forms of inhalers, nebulizers, steroids, antibiotics, intravenous medication and physical therapy, not to mention various forms of tests performed both locally and across the world. Currently, as I continue to fight this most recent infection, I take a cocktail of antibiotics and do one hour of physical therapy daily, accompanied by a nebulizer and pulmonary device. At the height of the infection I had a PICC line and received IV medication three times per week. The largest part of my treatment, however, is to stay physically active and well rested. Anything that helps my immune system stay strong helps me to stay strong and fight current and future infection.
How does this impact your schooling?
To be honest, nothing stopped me much when I was a kid. I was a top athlete, student and overall determined and successful in most things I did. I would never have considered myself handicapped. Most of that is because I was lucky enough to have loving parents and a happy childhood, where most of these medical situations went over my head. In retrospect, it’s possible that I missed a lot of school, especially at the time of my diagnosis, when I was being shuffled around the Greater Los Angeles area to find out from specialists exactly what was wrong.
I also had pneumonia five times by the time I was in fifth or sixth grade. Then in my late 20’s, when my new diagnosis was discovered, I was very sick for about 2 years. I lost 30 lbs and had minimal energy. Again, partly because of the slow growing nature of this infection, this is all realized in retrospect. At the height of my infection, I was actually completing a Master’s thesis in Art History in London and I thought the exhaustion I felt was mostly from a rigorous, academic work load.
The biggest impact has actually been in my adulthood, where I have had to embrace a slower start to my career. At times, I’ve felt very frustrated and wallowed in some self pity as I’ve watched friends excel — passing the Bar or starting their own businesses — while I’ve had to dedicate these pivotal years to my health. In the end, though, I wouldn’t trade the life experience I have gained for anything. I genuinely believe that it will ultimately enrich the skills I gain through work experience and one day I’ll find myself doing exactly what I’m meant to.
What or who has offered you the most profound support?
Without a shadow of a doubt, my parents, both physically and emotionally. From taking me to world class specialists, caring for me post surgery or when I was sleeping 20 hours a day, to never letting my physical limitations stop me from taking opportunities that would never come again — living abroad and traveling the world — they have been my encouragement and strength. They have moved heaven and earth to make sure that I don’t miss out on a single positive experience simply because I may have less energy than someone my age. I am also fortunate enough to have two wonderful siblings and some incredible friends, who have surprised me by finding ways to show me that they care, by simply asking how I’m doing or visiting me in bed with funny story or a love-packed meal.
Even the simplest acts of kindness are cherished forever, especially at a time when you are feeling overwhelmed, scared or left behind. I have also been surprised by people that have had a hard time doing these things, and that too has oddly given me strength, through the adult realization that we are all given the tools to survive our unique struggles and not everyone is meant to share in yours, making those that are, that more precious.