Jessi was diagnosed with a form of juvenile arthritis during her sophomore year of high school, but she refused to let her chronic illness keep her from realizing her dream of going to college. Last year, JGCAF offered support to help her get there, and she started her freshman year at Boise State University in the fall of 2011. We recently caught up with Jessi to find out how she is feeling, how her first year of college is going, and what it is like to be away from home for the very first time.
Coming from Southern California, how did you end up at Boise State University in Idaho?
I actually applied somewhat as a joke, never thinking I’d get accepted. My stepfather thought it would be humorous to tease my Mom about it. I’d say that being a California girl, let’s see if I can make it on my own in Idaho, so far away from home. After I received the acceptance letter, my family thought it would be a good idea to visit the campus just to see what it was like. I fell instantly in love with the beautiful scenery and the academic programs, and everyone there was so friendly. So the school that seemed like an unrealistic long shot, turned out to be the perfect place for me to go to college.
What is it like being away from home for the first time?
I was a little nervous at first, but at the same time was so excited to be more independent. Being away from my mom and sister was really hard. They took such great care of me at home. But I’ve been so fortunate with my living situation here. I’m in a dorm with a suite of 8 really nice girls. I really bonded with one of my roommates; she’s like a sister to me. She constantly asks me how I’m feeling and even goes on doctors’ appointments with me. There’s so much emotional support here that it really is my home away from home.
When I first got here last fall, I wore a wig from losing my hair, due to a year of chemotherapy. I was feeling like I was hiding my real self behind that wig and did not expect anyone else to accept me for who I am. I eventually opened up, and my roommates convinced me that I did not need to wear that wig any more. With their encouragement, I left it at home during Winter Break and returned to college with my short hair that was just starting to grow back. It’s funny, because my hair used to be pretty straight and now it’s growing back curlier like my sister’s. It is liberating to not have that hot wig on my head any more and not worry about what others may think.
How is your mom handling the distance between school and home?
It was very hard for her in the beginning. We texted and called each other every day. She was very worried about me, but I could tell she was trying not to be too overprotective. Now that I am feeling better this semester, my mom seems much more at ease. She knows I have a strong support system and great medical care here. I really appreciate my independence.
It sounds like you have an amazing family and some very special friends.
Yes, I’m so fortunate that way. In addition to my roommates, I am a member of the Alpha Chi Omega sorority. At the moment I am on medical leave from the sorority so I can manage my time better and try to stay as healthy as possible. There are about 50 girls in the sorority and they are truly like sisters, always being there for each other. I have a big sister there who has two friends, who are upper classmen, and they are all very supportive and protective of me. Even though I am not fully active, I still support the sorority in its activities and causes.
How are you feeling these days?
I’m so grateful that I have been feeling so much better this semester. I have actually had no horrible days in a while. I’m done with the chemotherapy and am on a new drug that seems to be helping with my symptoms. Even when I’m feeling my best, I experience daily fatigue and need to take naps. I used to have so many debilitating headaches, and now they are fewer and farther between. My rheumatologist here at school is amazing.
Was that an adjustment starting with a new doctor in Idaho?
Yes, it was scary at first. When you have a chronic illness you get used to relying on the same doctor. But when we looked for a new one here in Boise, we received some great referrals for the doctor I now have. As soon as I met him, I knew he was right for me. He is so responsive; I can email him any concerns, and he literally replies to me within in 5 minutes. It is so reassuring.
How do you manage your schoolwork when you are not feeling well?
I take advantage of our school’s special programs. There is a Disability Resource Center that totally supports students like me with physical challenges. This program allows me to have flexibility with my attendance when I have a bad day, so I can miss class if need be. I communicate with my professors a lot and have friends in most classes who are happy to share their notes and turn in my assignments. I’ve learned not to schedule early morning classes so I can sleep in longer. This semester I have been able to go to every one of my classes! This is such a blessing, as I was sick a lot last semester and needed two minor surgeries. I’m actually working out every day now and am able to swim at the Rec Center. I’m trying to do all I can to be a healthier person.
What are you studying?
Right now I’m taking general courses, since I’m only a freshman. When I started I was hoping to study psychology, but I’ve recently become more interested in business marketing. I’ve discovered that I have a knack for writing. This year I wrote an essay about my diagnosis – what it is like to deal with the challenges and how my incredible support system helps me get through it all. My professor has encouraged me to enter the essay in a writing contest. It’s very exciting!
It sounds like writing is a terrific outlet for you, and your personal story can help so many others.
I sometimes find myself writing out my thoughts longhand on a piece of paper, the old-fashioned way. Then I type it out on the computer. I guess that’s a sign that I really enjoy what I am doing. I really want to give back in any way I can, and if that is through my writing, I suppose that can be a good thing.
What do you like to do when you are not studying?
I enjoy riding my bike along the Green Belt, which runs along the beautiful Boise River. I love hanging out with friends. We like to go out to eat, taking advantage of the student specials. Sometime we stay in and enjoy popcorn and a movie or may get dressed up and go to the movie theater and dinner. I really like reading too, and since I got a Kindle for Christmas I am always looking forward to downloading a new novel.
I understand you started an organization at your high school. Can you tell us about it?
When I was first diagnosed in high school, I saw a therapist who inspired me to take action to help others like me. I started a local chapter of a national club called The Sparkle Effect. It supports those with physical and learning disabilities and helps them feel accepted through dance and cheerleading. There are about 13 members now in the chapter.
What do you miss the most about home?
I probably miss my little sister the most and other family and friends. I sure miss the beach and watching the sunset. I realize now that I took that for granted, growing up in California. People in Idaho obviously don’t have a beach! Oh, and I miss the shopping too that we have in California; it’s just not the same here.
Had you ever experienced winter weather before?
I have visited cold places, but have never lived in one like this. It was truly an adjustment – especially the gray days! I had to buy a whole new wardrobe and am finally getting used to the fact that I have to grab a scarf and mittens as I head out the door.
What are you planning to do after graduation?
Luckily I have time to figure that out. I know I love to write and want a career that somehow helps others out. Before I was sick I loved helping my dad with his fire department fundraisers. There was a special event to raise funds for Muscular Dystrophy called Fill the Boot. Firefighters hold out their boots so donors can drop in money. It’s rewarding helping someone less fortunate. When I was sick, I was the one being helped all the time and did not like relying on others. Now I want to be the one doing the helping. Although I’ve been through some really difficult challenges, there are people going through challenges that are way worse. Those are the people I want to reach out to.
Can you share with us how you get through the most challenging times you’ve faced?
You find yourself constantly asking, ‘Why did I have to be the one to get sick?’ Some days I just need to be by myself and sleep. Other days I just want to go out even though I’m not feeling well. In high school I was on a cheer team. Just for that hour I did not think about my illness, headaches, medications or doctors appointments. I was able to live in the moment. At college I may go for a walk to try to remove myself from the physical challenges. If you let your illness get to you, it turns you into a negative person. Yet no matter how positive I try to be, some days it’s hard to keep a smile on my face. That’s what friends and family are for, to help lift your spirits.
There’s one memory I have that really stands out. My little sister often takes the role of big sister, puts on a positive face and tries not to show her emotions. I had a horrible day in high school and had to go to the hospital. I started crying and made a comment about how uncomfortable I was in my jeans and how I wished I had sweatpants to change into. It just so happened that my sister was wearing sweats, and she insisted that we change pants so I could be more comfortable. It may seem like a small gesture, but at the moment it was everything. It really helped me get through that day, and I will always remember her generosity.
Do you have any advice for another student who has chronic health challenges but wants to go away to college?
You can do whatever you set your mind to. Don’t let anything hold you back, including physical challenges. Use all the resources available to you at your school, and communicate with your teachers. Don’t be embarrassed about needing extra help; it can really make a difference in your success. And don’t feel like you have to hide behind your disease; your real friends will love you for who you are. Though it’s hard to imagine that some people may not be supportive, not every person you meet will be kind. Don’t worry about those people. And don’t let your disease take over your life. It may always be a part of you, but it’s not everything you are. I won’t let my condition define me, and I won’t hide behind my wig any longer.
Is there anything else you’d like readers to know?
I am really thankful for Jeff and his foundation, because they have given me so much support. You can’t imagine what it’s like to have hundreds of people on Facebook wishing you the best and praying for you. I often think about all those people who don’t even know me, and it gives me strength. Jeff is such a generous and caring person. I only hope to one day help others the way he helped me.
Jessi, thanks so much for talking with us. You are courageous and wise beyond your years, and it’s obvious that many people facing chronic health challenges can greatly benefit from your insight. Everyone at JGCAF wishes you good health and the best of luck in your next 3 years of college and beyond. Please stay in touch and let us know how you are doing.