The following is my application for the Cinderblocks 2 Patient Travel Scholarship.
This has been a hard Winter. My health has not been good, and my mental health has suffered as a result of less sunlight and more days on the couch instead of hanging out with friends. I woke up recently with a mouth full of sores that are probably signs of a Crohn’s flare, but I’m trying to use denial as a coping mechanism for as long as possible.
Another blow came this Winter when I was not offered an ePatient scholarship to MedX for 2015. Objectively this makes sense, and I am thrilled that a new batch of ePatients gets a chance to attend, but I was still crushed. You’d think that after 20 years of chronic illness I’d have a huge support network, lots of mentors, tons of confidence. But the truth is that I don’t. Attending MedX in 2012 was life changing for me in so many ways, but most of all because it was the catalyst for a much wider advocacy – for all patients – after seeing in a profound way how much we were alike at core in our hopes, dreams, frustrations, and even in specifics like the medications we take (Prednisone, biologics). I knew that we needed to break down silos in health care, but came to realize that I did not want to be stuck in a silo for Crohn’s patients only when I could improve life for so many people with the same amount of effort.
My interest in the wider world of chronic illnesses has also been a great learning experience. I almost shudder to think how ignorant I was about many conditions, but I didn’t know anything about my own disease when I was given the diagnosis 20 years ago. It’s not hard to Google the textbook information, but meeting people in person or on social media and hearing their stories is my favorite way to understand what life is really like for them so I can identify common issues that need attention. It’s not all negatives, either! I learn so much about what’s working in one area of healthcare, so it can be applied to many others. Being involved in this world has taught me so much about the challenges health care providers face. As a patient, I don’t believe I will succeed in changing anything unless we can all work together. The best doctors are the ones who are burning out the fastest. We need to encourage and support them, but back that up with action and advocacy.
Around the time I got the rejection notice from MedX, I saw Regina Holliday opened registration for the Cinderblocks 2 event. I was so excited (surely this would be an awesome event on its own terms, but also a good replacement for MedX) that I was actually the first patient to book a ticket. The mission of the event permeates all aspects, so thankfully it was reasonable to put the ticket price on a credit card. I saw this event as a great learning opportunity, a good way to refresh and re-inspire my advocacy, and a nice thing for my Winter-depressed self to look forward to.
Even the logistics of this scholarship fund excite me (I’m a dork, okay?). I have tried in the past to start a general scholarship fund for other events. I tried, and failed because I could not get event organizers interested in the idea. Crowdfunding is a really great way for many people to achieve awesome goals, but patients are people and we may not be talented in the many skills that it takes to run a campaign. Even if we have those talents, we may not have the social media reach, or friends with deep pockets (I certainly have experienced the odd phenomenon that an increasing majority of my friends are other young women with chronic illness and empty bank accounts). Heck, even if all those things align, how many patients have the time and energy needed to devote to solo crowdfunding? So I am thrilled with the general scholarship pool and more than happy to promote it by social media, song and dance (you pay me to stop singing), or dressing up in a costume and standing on the side of the road twirling a sign.
Okay, so why should I get a travel scholarship? Well, I’m in that phase of advocacy where people are happy to have me volunteer, or join their board, or contribute to their blog, but not yet at the stage where people will pay me (not even to cover my costs of showing up). I have been learning how to wrangle invitations to local conferences, so that I may stand up to the microphone and ask the questions that other patients would, if more of them had been allowed in the room. Even though I save a lot of money on travel now as a local to Washington, DC, even a day of parking or a cab ride to a venue can easily eat up $30, and I currently cannot fathom the day when even $10 is an expense that requires no bat of an eye.
Most sick people constantly fight the accusations that they are lazy and entitled. Even if we do not believe these, their poison seems in to our souls. I have worked since age 15, but whenever I work harder, the disease has always been working smarter. My last surgery was in 2005 and all was well for a bit, until I started having accidents (that’s a euphemism) and developed PTSD. This makes working even more difficult. Then I was diagnosed with Fibromyalgia. My income is critical to affording the medication and accommodations that enable me to fight my illness. Since age 13 all my choices have been made with my future earning potential as the focus. This is heartbreaking in a way, another huge way illness has stolen my normal life and forced me to become an adult instead of a teenager. But I’m grateful too, because I learned the hard truths and could make critical decisions before it was too late. My career plan is a slow and steady one, and I’ve made so many concessions in the name of stability and benefits. My greatest fear is that my progress will be outpaced by disease progression.
If awarded a travel scholarship, I will first pay off the ticket cost on my credit card. I will use some money for travel to and from the event. If funds allow, I will book a hotel room for double occupancy and open the other bed to another attendee in need, at no cost to them.
If you’ve read this far, I’d like to encourage you to please donate to the travel fund. You’ve read my account of why a fund of this nature means so much to me and other patients like me. The scholarships offered are paid for with this travel fund. Regina and S4PM are also looking for companies interested in sponsorships, so please contact them if you fit that bill.