Even More MedX Access

Whenever I would hear or think about the Stanford Medicine X conference over the past couple of years, I would imagine the MedX piano music playing, the announcer saying my name, and me walking on stage. It was my “dream big” goal. Well, it just happened in real life.

21098991513_f5a4530e7c_o (2)As I took the stage, everything that I had envisioned over the past several years fell into place. I got to address hundreds of healthcare’s most impactful individuals, and spread a message that three years ago I could have never imagined I would give, and said words that I never would have imagined saying publically. My friends, being the cheerleaders that they are, hosted a viewing party on campus.

A spectacular video of me filmed this summer played right before I took the stage, and I couldn’t be happier with how it turned out.

Taking the stage was one of those moments that I will never forget. The lights hit, and I just started talking. I had a message to share, and I did it. I used to be the kid in class who started crying in front of everyone whenever I had to give a presentation, regardless of the topic. I once cried through a presentation of a poem about bunnies. I had to take a summer speech class for school in order to try and get over my fear of public speaking. From the feedback shared on Twitter, the audience needed to hear what I had to say at MedX much more than that class needed to hear about a poem about bunnies.

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Talking to and meeting people that I had connected with via Twitter over the past several years at the conference itself was absolutely fantastic. I got to catch up with old friends like Alicia Staley from #BCSM Chats whom I had met a few years prior but hadn’t seen since, and meet and check out Dana Lewis‘ from #HCSM Chats artificial pancreas up close and personal. Connecting with Tom and Audun from Symplur face-to-face was great as well, because their efforts have been instrumental in the upkeep of #BTSM Chats, and all Tweetchats, really, over the past couple of years. Most importantly, Liz and I were able to reunite for some #BTSM bonding, which is something that we rarely get to do. The other ePatients in attendance were all incredible, and each story was more awe-inspiring than the next. Never have I ever heard caregivers advocate so hard on behalf of their children than at this conference, and never have I been around so many other people with chronic illnesses like me, but at the same time who are still so different. Each ePatient was so well versed in their conditions, and I’ve never seen that in an entire a group of people before. Every single one of us knew how to fiercely advocate for ourselves, and it was fascinating to watch take place. This rarity is another breed of patients. We’re paving the way for future patients to come. The healthcare providers, researchers, and technologists who I had the privilege of speaking with exceeded my expectations of their understanding of patient-centered care, Drs. Roni Zeiger and David Rosenman in particular.

When I returned to Arizona, I had finals to prepare for. Oh right, college. I’m not one of those international scientists who was presenting at the conference too, am I? Nope. I still have a few degrees to go if I want to get on their level. Processing what had just happened was something that was going to have to wait another week or two. I came back, took my exams, and did a Tiger Woods victory dance that I had not caught the MedX bug that everyone else seems to have gotten. Then again, I am an honorary doctor after participating in the doctor-patient simulation lab, so I could have prescribed myself some antibiotics if I needed them, right?

My undergrad friends were amazed at this opportunity that I was afforded. They wanted to know how they could get involved. How might we make MedX more accessible to undergraduate college students? How might we turn a private event, something that requires funds outside of a college-student’s budget, into something that students could gain access to, in-person? What would that look like? Would it be through more pop-up events? Would it be through student-curated events on campus?

These students are highly motivated pre-med and pre-health students who, in their own words, say that attending MedX would be “the dream.” MedX was once “the dream” for me, but then it became my reality. I gained access as a patient. Sometimes having a brain tumor comes in handy, I suppose. These other students want access too, but they don’t have brain tumors, and they can’t apply to the ePatient program. Emily Kramer-Golinkoff said during a panel that many patients are literally dying while they wait for research to improve, her included. This is the reality. These students would do almost anything to be at this conference. They are energized and motivated to be a part of this conference that will hopefully be a catalyst to keep Emily alive. They want to be a part of this shift in medicine. They want to learn from patients, and they want access to this conference. They want a seat at the table. Watching online isn’t enough for these students anymore. They want to talk to the patients, and they want to talk to the rest of the speakers. Twitter can start conversations, but they say that it isn’t enough. They want to debate the ethics of research protocols, and they want to challenge how doctor-patient interactions are taking place. They want to bring up issues that they see aren’t being addressed by physicians they are interning and volunteering with, and their ideas are just as valuable as mine. Undergraduate students want to be involved, and they don’t want to have to wait until they can afford to attend the conference as future physicians. They don’t want to wait, because Cystic Fibrosis won’t wait, and because no other illness will wait, either. Some students might be under the legal drinking age, but they aren’t too young to know that they want to change healthcare. They might even be the ones to do it.

Disclosure: As a part of the Stanford Medicine X ePatient Scholar Program, I received financial support for travel, lodging, and registration fees for this conference. The views expressed in this post are my own.

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Course and Vocabulary Update

I recently explored enrolling in a course regarding “the business of cancer.” The course is being offered for the first time this Spring and looks at cancer as a political and economic activity. It’s less about how people experience cancer as an illness, and more so about the kinds of stories that get told about cancer. Unfortunately, as a freshman I am 13 credits short of eligibility for this upper-division course.

I emailed back and forth with the professor offering the course, sharing articles and excitement about the potential of teaching the history of cancer in both a scientific and sociological context. After meeting with the professor today, I learned that the course will be offered again in the Fall, so I will enroll in it next year after having my freshman year under my belt.

It turns out that the professor’s mother has a brain tumor. After the description of “benign” and “not uncommon” was given, I asked if it was a meningioma. Bingo. She said her mother had been treated with radiation because the location was hard to operate on, and we proceeded to discus proton beam radiation as her treatment. If there was a brain tumor quizbowl team in high school not only would I have been captain, I would have been an All-American.

My vocabulary continues to build since surgery. The shrinkage is much more apparent to me now that it has expanded again. Looking back at videos I took predominantly during the first six months after surgery is eye-opening. My brain resorted to using the most basic descriptive words following surgery such as “good,” “great,” “awesome,” etc. instead of recognizing words like “phenomenal,” “encouraging,” or even “exciting” as options. I’ve been writing words in the margins of notebooks and looking them up after class to further expand my vocabulary. It’s incredible how simply hearing a word again brings back the recognition and application.