A few weeks ago, I was contacted by a reporter from The News Record, the student newspaper of my university. She had seen my fliers around campus and wondered if I could answer a few questions and perhaps do an interview with them for a piece? (Click here to read it!)
Of course I could! For some time, I’ve been interested in not only fundraising but also in raising awareness about disabilities on campus, the wonderful things service dogs can do for people, and my three main conditions: MCAS, POTS, and EDS. This was a great opportunity for me, and I hoped I could also make it a good experience for the reporter as well.
I hoped I didn’t mess it up too much, to be honest.
I was interviewed by Elizabeth Schmitt for almost an hour outside of a coffee shop on campus, on a beautiful breezy fall day. I was embarrassed and in the middle of a mild mast cell reaction that I knew made my skin look like a half-ripe tomato, all green fading to red splotches. Shortly thereafter, she contacted me again with followup questions, then asked for a list of people who knew me and might be open to being interviewed. A while later there was a request for photos, and then later still, if it might be possible to shadow me. I was beginning to get an inkling that this might be more than an easily ignored small column. I was becoming a little more concerned about possibly misrepresenting a rare disease community. That’s not a small thing.
But the reporter was brilliant. She tried to pose thoughtful questions, observe closely, and even called up experts in the area to interview them about MCAS. She was kind. It was rather cathartic to get to tell my story to someone, in one chunk and not piecemeal as the situation dictated. She was not analyzing and reacting to it as medical doctors or family might, but as an interested, neutral third party. Those emotions took me completely by surprise. During the shadowing, I appreciated the opportunity to point out what did and did not work in the campus, to show how hard people had worked to make it possible for me to still be a graduate student on campus, and to comment on what still could be improved. (I’m a musician. We always believe that something could be improved! 🙂 )
Then the piece ran, and its impact was beyond anything I could have imagined.
To start with, I think the reporter and newspaper did an excellent job. The paper, whose front page had a photo of a happy golden retriever high-fiving students, disappeared so quickly I only had a chance to grab a single hard copy. It didn’t use the word “inspiration” once, letting readers draw their own reactions. It was informative. It was also very personal.
Once again, I was taken aback by my own feelings. I hadn’t expected the rush of emotions at seeing my words in print (do I really sound that young?), of the sight of my own face smiling at me from a newspaper, of my story being told in black and white to everyone on the campus. I sat on the campus shuttle and self-consciously read about myself on the ride home. The feel of paper and ink has a physical solidness to it that the internet sometimes lacks. I tried to find a hardcopy to send home, but they were out at each location I tried. Instead, I emailed the internet link to my family (writhing just a little inside), and then I posted it to various online communities to see if we’d managed to pull it off or if I needed to get something corrected post haste.
Within a few days, results were in. It was a great piece! I was contacted by a few people with possible leads on service dogs!! (We’re still assessing, so I’m trying not to get my hopes up. Hehehe. THEY’RE UP SO HIGH!!!) My grandparents told me that it expressed what I was going through in a way they could understand, and they found it very helpful. They shared it with their connections and made contact with other people who knew about Mast Cell Activation Syndrome and current research. It has led to a number of open conversations about this condition, and I’m so deeply thankful that my family now knows about this in a way I was unable to communicate. Seeing it in print made it more real for them, as well. It seems to be helping us process what has been an incredibly difficult situation, and I couldn’t be more grateful for the work of The News Record and Elizabeth Schmitt for their work on this piece!!