Dakota Fisher-Vance - A Young Life Turned Inside Out
In May 2011, Dakota Fisher-Vance was graduating from Bryn Mawr College with her B.A. in biology. While preparing to pursue medical school, she developed an interest in education. The intersection of these passions led her to a dream job in Boston, working with low functioning autistic children. Unfortunately, those children never had the benefit of knowing Dakota. Just before she was to begin her new career, a cancer diagnosis, followed by a proctocolectomy and three months with a leaking ostomy, forced her to pass on the job she was so excited to start.
Two and a half years later, Dakota can say in retrospect that “everyone has their story…it could be a rare disease, it could be abuse.” While this is true for everyone, and especially so in the hereditary colon cancer community, one cannot help but stand in awe of the juxtaposition.
The abrupt transition from being on the cusp of autonomy, progressing through her emerging adulthood, to dealing with the day-to-day struggles of cancer and surgery cannot be understated. The experience threw Dakota into a state of despair. Down and depressed for months, she reached a point where she rarely left her room, even during Thanksgiving.
“I had done everything right, but it didn’t matter. This was something I could not have prepared for.” Her supportive parents encouraged her to couple her passion for medicine with her new diagnosis. Even the support of her teachers didn’t ignite Dakota’s interest. She made the mature decision to not let this disease infiltrate her life…
...until one particularly unnerving experience Googling “FAP.” Fishing through countless pages of adult content before finding information pertaining to Familial Adenomatous Polyposis caused frustration to quickly evolve into anger. The unfortunate truth is that, in the online community, ‘FAP’ is synonymous with male masturbation. “This is what they get?!? It’s absurd and cruel! When someone looks for information, they should see a friendly face. They should find information that’s relevant...not search through 20 Google pages of that!”
Thus began FAPulousTV, Dakota’s YouTube based video blog. While she was hesitant about delving further into the FAP world and unsure what she could do globally for people with FAP, she felt compelled to push back against this perversity. Dakota has posted 25 vlogs ranging from “F.A.P.ology 101 to “F.A.P. + Fertility”. Most recently, in a selfless act of bravery, she posted a picture of her abdomen revealing “Jack”, a desmoid tumor growing across her right side. She currently has 79 followers and her most popular video, “Food Fit for a J-Pouch“, has been viewed over 800 times. Dakota’s vlog serves to educate those in the FAP community to have a better understanding of their disease along with language they can use when explaining their experience to others. She may not help everyone with FAP, but she has helped some people profoundly.
From "WOD 2012 - Let's Be Heard: Dakota's Ostomy Conversation"
Following are samples of the feedback she has received:
“Thank you for all your videos, I was just diagnosed a couple days ago and have an appointment for an endoscopy, one with a geneticist and a surgeon to discuss removing my large intestine next week. Knowing there's other people out there and seeing your videos really help! :) “ - M.R.
“Hi there. Your videos are great. I'm probably going to be starting j-pouch surgery in about 2 months. It seems like you're very happy with your pouch and able to be nice and active…Keep up the positivity! :) ” - L.U.N.
In addition to helping others, her vlog was the beginning of her own recovery. Still unable to work, Dakota developed an interest in baking during her recovery which has allowed her to subtly reincorporate science back into her life. What began as a home hobby led to culinary, and ultimately therapeutic, international travel experiences in 2013. During this time of exploration, she learned that she is more than FAP. She is still a whole person with all the needs and passions of any other young adult.
“I [have] learned that I’m different [now] and that I still have things [that are] a part of me from before, but I have to dig deeper to pull them out.”
Dakota is not sure what the future holds (she “still has regular, 20 something problems like figuring out what to do in the world, they’re just coupled with more health oriented issues”). She definitely sees herself continuing as a patient advocate and wants to produce resources for young adults living with FAP and other chronic illnesses. She is also volunteering with the Familial Adenomatous Polyposis Foundation to organize patient networking events at HCC expert care facilities. Dakota is a dynamic, brilliant, and compassionate woman. We look forward to seeing all that she accomplishes! Follow her on YouTube and Facebook.