Spend a Moment with Rylee Gustafson

Photo: California LGMA

What do you remember about your illness?

I can remember the beginning — showing symptoms, and I vaguely remember my recovery. Unfortunately, the only thing I remember before I showed any symptoms was that I picked the bag of spinach. I was grocery shopping with my step-father. I volunteered to choose what my family was going to eat that day, thus, I had to pick a bag of spinach. It was my birthday, and we were going to California. Two days later I was deathly ill. I ate the spinach salad at home, but got sick in San Francisco. I remember having mild abdominal pain at first and then it grew progressively worse at a very fast rate. It got so unbearable it felt like someone stabbed me in the stomach. Once I saw that I had bloody diarrhea, I could tell that my parents were worried. I knew immediately that something was wrong with me. I felt so helpless and thought the world was collapsing; I knew right away that I was dying.

All I can remember from recovery was that I had to re-learn how to do simple tasks like walking, dressing myself, bathing, eating, etc. I had a test to see if I was able to recall basic writing, reading, and math skills. It was possible, as a long term effect, that I could have brain damage due to the swelling of my brain. Thankfully, I am okay now and so far there have not been any repercussions from the brain swelling.

Tell us about a time when a consequence of your illness caught you by surprise.

Even though I am quite healthy, I have to live for the rest of my life with health problems because of what happened to me. Every day, I think about when my body might shut down again. On a daily basis, I wonder when my kidneys will fail and I anticipate having to take heart medication again. After recovering, I became healthy again but the doctors said I have to prepare myself to assume for the worst to happen. It is very possible that my kidneys will start failing when I get older.

At the end of my freshman year of high school I was diagnosed with type one diabetes. It was a surprise to my family and I because it had already been six years since I’d gotten sick. We were not expecting me to become diabetic for the rest of my life. In the hospital I was taking low doses of insulin but by the end of my recovery I did not have any problems regulating my blood sugar. At that time, it did not seem like it would be necessary to look for diabetic symptoms shortly after recovery.

Why did you get involved with Stop Foodborne Illness?

I got involved with STOP from my mom. For us, the immediate reaction after my foodborne illness was frustration and annoyance because such an issue actually exists. My mom researched statistics on national foodborne illness outbreaks because there were so many questions about food safety and foodborne pathogens. I decided to become a member of Stop Foodborne Illness because my mother told me I would have the chance to meet people like me. I am not the only one who suffered from the 2006 spinach outbreak.

I’m very thankful that I work with Stop Foodborne Illness. Sharing my foodborne illness story has made me become a strong person. I am no longer afraid of eating spinach because I faced my fear of talking about my illness. Because I care about everyone’s well-being, today I am a passionate advocate for food safety.

What’s happening in your life right now?

I cannot believe that I will be a sophomore this coming fall at University of Puget Sound. Though I have not chosen my major yet, I would like to continue studying politics and government. Usually I am not at home during the summer, but this year I decided to stay home — in Henderson, Nevada.  When I am away from home, I miss my house, and spending time with my family, and close friends. So, I’m really glad I chose to stay home.

So far this summer, I’ve finished reading two novels, spent time with family and friends, and made time for self-care. I have had time to really think about what I want out of life. I want to be a food safety advocate and continue sharing my story. I want to travel the world, and strive to meet bliss. I want to live a fulfilled life.  I want to be able to look back at all of my accomplishments, and obstacles I have overcome.

Talk about a time you asserted your independence, or point of view. Or a time you stood up for yourself.

I still cannot believe that a year after my illness I was ambitious enough to talk about my experience. Going to Washington, DC, in 2009 was one of the most challenging decisions I have ever made. Deciding to make a positive change and not dwell on my illness, to share my story with not only Congress, but with the American public is the most ambitious thing I have ever done. After recovering, I wanted to know more about America’s food policy.

Why did I have to suffer from getting sick? Are there others like me? My mother encouraged me to go to Washington, DC, because STOP and other food safety advocate groups were lobbying there. I decided to go because I wanted to meet other people who went through a similar experience.

I was not expecting to find out that sharing my story and talking about food safety would change the future of American food policy.

That trip made me see that I am not alone and realize that foodborne illness is a problem that needs to be addressed more often. I would worry constantly that my story did not matter to government officials. What if my story is not good enough for them? What if my story doesn’t help them to realize that there needs to be better food safety regulation? I am glad that I did go to Washington, DC, because food safety has become my passion. It is a reason why I want to keep on living. I am here because I am suppose to keep on helping others, and continue advocating for safer food. I am here to create positive change.