Last week, I had the exciting opportunity to speak on the opening panel at the NORD Breakthrough Summit in Washington, DC. NORD, which stands for the National Organization for Rare Disorders, is a patient advocacy organization dedicated to individuals living with rare diseases and the organizations who serve them.
The purpose of the conference was to bring together different stakeholders in the rare disease space to discuss topical issues that affect the community. The theme of the conference was “The New Era of Patient-Focused Innovation,” and my panel, titled “The Next Generation of Rare Disease Advocates”, was slated to be the keynote. I wish you could have seen my face when I found that out! It looked something like this:
As the keynote panel, we had the task of setting the tone for the entire conference. The plan was to have each of us share our personal story and how we became a rare disease advocate. Once I learned who else was on the panel, I knew we would knock it out of the park. I was thrilled to take the stage with such a distinguished group, and even more thrilled that I still qualified as “the next generation”.
This afternoon, after waking up from a nap (what can I say, I get tired easily), I checked my email and learned that my blog post for the Clara Health writing contest won first place! I thought my entry was strong, but I never entertained the thought that I’d place, let alone win.
As someone who rarely wins anything, outside of the occasional fantasy baseball league, winning this contest is a huge accomplishment for me. The cash prize certainly is nice, but even more important, the contest did a great job of highlighting and featuring an underutilized asset in the healthcare space – the patient experience. The contest was a great way to compile these experiences and showcase them to a larger, non-patient audience.
Here is a link with all the entries to the contest. It is well worth the read, and shows that there are a lot of talented patient writers out there whose voices deserve to be heard!
A couple weeks ago, I had the opportunity to have my patient story recorded by Annie Brewster at Health Story Collaborative. The end product will be a 10-15 minute audio clip chronicling my journey over the last nine years, from my first symptoms to present day. It was a fantastic experience, and I’m glad I reached out to Annie on a whim after watching her TED talk.
Towards the end of our call, I asked about CommonHeath, a healthcare blog run by WBUR, Boston’s NPR station. While researching Annie’s background before our call, I noticed that she had written several pieces on the site, and was involved with curating patient stories. I asked her if my story would be a good candidate for CommonHealth, and she said it would be.
Encouraged, I reached out to Carey Goldberg, the editor of CommonHealth. One thing led to another, and, with the help of Carey and another editor, Ginger Marshall, we decided I would write about my thought process in accepting that I needed to get a wheelchair.
It’s a difficult subject to write about. First off, it’s a heavy topic, fraught with emotion. Second, it is difficult to convey, in 1,200 words, what it feels like to come to this acceptance. I could write 10,000 words on the topic and it would be incomplete.
Difficulties aside, I am proud of how the piece came out. The title isn’t my favorite, but I understand why it is so straightforward and blunt. It clearly states what the article is about, in no uncertain terms. As an opinion piece, you are either interested in reading more, or you’re not.
It was a thrill to see my article on the CommonHealth website and the WBUR Facebook page, sites that thousands of people frequent on a daily basis. More importantly, I was heartened by the positive reaction of other patients, and how those going through a similar situation could relate to what I wrote. The truth is, I was initially reluctant to write the article, mainly because it is a touchy and emotionally-charged subject. I know how I feel about the experience, but it is difficult to put into words. What if someone takes something I wrote the wrong way, or reads into it something I didn’t intend? Despite my initial hesitation, I decided it was a risk worth taking.
The article had a good run on social media, but, like everything else on the internet, I figured it would fade away into obscurity.
Or so I thought.
Yesterday, around midday, I was checking the WordPress app on my iPhone, casually glancing at Sidewalks and Stairwells’ page views for the day. On a good day, I usually get 20-25 views on my website. I checked the app: 200 views. I wish you could have seen my face!
Initially, I thought my site was being flooded by bot traffic. Then I saw a comment on my front page mentioning they found my site via NPR, and it hit me – my post got picked up by NPR’s social media accounts.
I checked, and there it was at the top of the NPR Facebook page, which has nearly 6 million followers. This article that I wrote, partly for my own healing, was now being read by millions of people.
The comments started flooding in. I was hopeful my article would have a positive impact on people, but part of me was nervous that there might be some negative, troll-ish comments that would make me regret being so vulnerable (I know, I know, I should never read the comments section). Fortunately, there were only a couple bad ones, and they were so comically off-base that I found them more amusing than anything. You truly can never please everyone.
By the end of the day, I had over 1,100 views. Yesterday, I had 450 more. 1,500+ in 2 days. Not bad!
I have been hoping and praying for a day where my blog, my little slice of the internet, gets seen by a wide audience. I don’t want this because I want to become famous (I am an introvert after all), rather, my hope is that the more people who read this site, the more people I might be able to help. I share my story, warts and all, because I want it to resonate with others.
I am grateful for the outpouring of support by complete strangers around the world. Overwhelmingly, the response to my article was positive. Patients shared their own struggles, and readers who were not disabled valued the perspective I brought to the table. If I can use my journey, which was once an intolerable nightmare, to inspire and inform, that is a good thing.
I hope yesterday is just the beginning, the big break I have been waiting for. I am only one person, but I know the impact one person, with the right message, at the right time, can have on someone’s life. I am here to pay it forward.