It Started with a Sign

(thanks DiabetesMine for including some of these thoughts in their writeup on recent DC advocacy.)

It was just two weeks ago that my only activities were eating, sleeping, working and protesting. With Trumpcare passage seeming like a forgone conclusion, it truly felt like my life and the lives of so many others were on the line. While I wasn’t sure my actions would make a difference (spoiler alert: they did), I wasn’t going to go down without a fight.

I’m not a professional advocate or protester. Usually, I’m not very spontaneous. If I’m going to go out and protest, I like to be part of an event that is already organized. But, on Tuesday, I headed to the Capitol with no plan or agenda. I figured an earlier afternoon rally would already be over. I figured worst-case scenario, I’d hang out at the Capitol with a sign I had discreetly made at work earlier in the day. Even if it was just me and my sign, it was better than doing nothing.

For a while, it was just me and my sign. I eventually got to meet Ben Wikler of MoveOn, who was still in the area. He tweeted out my sign and a little while later, a random group of 20 people had gathered and were chanting at the Capitol building. Our group of 20 was an unorganized, impromptu collection of people who felt compelled to do something. We chanted, we said hello to the ADAPT protesters who had been out for over 48 hours, we protested at Mitch McConnell’s house and then played a game of “Shame or Thank” as senators were leaving the building for the evening. Several democrat senators stopped by and thanked our small (but loud) group for being there.

  Found another person with diabetes!

Found another person with diabetes!

  Gathering at McConnell's house

Gathering at McConnell's house

  "Hi, Mitch."

"Hi, Mitch."

Despite having met none of these amazing advocates until earlier that evening, we became fast friends. We had to be vulnerable with each other early on. I told the story of how my family struggled (yes, struggled) with Type 1 diabetes, how the disease killed my mom, and how that has forever affected me in a way few would understand. I learned stories of cancer survivors and people dealing with their mental health disorders. I learned of so many kind souls who didn’t have pre-existing conditions but knew how important the fight was. I learned of families struggling and families saved by the ACA. It was truly one of the most inspired nights I’ve had in D.C.

  Planned Parenthood rally.

Planned Parenthood rally.

Wednesday was a bit quieter, as I knew Thursday would be the next big protest push and possibly the final vote on the ACA repeal. I headed to a Planned Parenthood rally with my longtime friend Brian. I heard a bunch of speeches from senators, representatives and advocates stressing how important the ACA, Medicaid and Planned Parenthood are in providing the country with healthcare coverage. After the rally, I ran into several of my new friends from the prior night. We caught up, learned about the protesting that had happened during the day and connected on Facebook. I would keep running into these friends throughout the week.

On Thursday, a protest at the Capitol, led by MoveOn, wasn’t scheduled until 8PM. I knew the night would be long and that I would stay out until the end. There would be a vote later in the evening to add the “Skinny Repeal” amendment. If this vote went through, the ACA repeal would effectively pass. This vote wouldn’t be until after midnight. The MoveOn team did an excellent job lining up speakers and when official speakers ran out, patients went up to the podium to tell their own stories. I listened to friends tell stories with such passion and eloquence.

I got to see a lot of friends at this rally. These weren’t my conventional, normal group of friends in D.C. These were friends from Tuesday night, friends from the #Insulin4All hashtag, and friends from other parts of Twitter.  There were several speeches talking about diabetes and how costly insulin is. We held the #Insulin4All flag up as high as we could.

Around 1AM, I ate the best slice of pizza in my life ordered by kind souls across the country to keep all of us protesters fed. I experienced waves of different emotions: hope, despair, frustration, passion and pride. I laughed and cried. Ben Wikler was reading updates when he received them as I was refreshing Twitter constantly. McCain voted no. Murkowski voted no. Collins voted no. The final vote closed.  We chanted, we hugged strangers, we took selfies with Elizabeth Warren. At 1:56AM, we had a victory and I finally headed home. My boyfriend was asleep when I got back and I woke him up to tell him Trumpcare had failed.

On Saturday, my boyfriend and I attended what would hopefully be my last healthcare rally for the week. Saturday nights are our date nights and the Our Lives rally was happening at 6:30PM. This rally was especially meaningful to me because we went together. In our household, I’m not the only one who is threatened by the repeal of the ACA. My boyfriend is a survivor of a rare cancer called Ewings Sarcoma that he had when he was a teenager.  He was a good sport with the joint sign I created. We listened to a lot of amazing advocates give speeches and we stood out there for families with diabetes, families with cancer and families, like ours, inflicted with both.

  My boyfriend and I. A pre-existing condition “power couple”.

My boyfriend and I. A pre-existing condition “power couple”.

The week finally ended and I realized just how many life lessons I learned. The best thing to say to someone when they apologize that your mom has passed away is a sincere “Thank you.” Twitter friends are real and there’s something special about meeting them in real life. Cynicism and feeling as if your actions don’t matter can stop advocacy before it has a chance to bloom. Actions do matter. It only takes one person to make a statement. Everyone has a different brand of advocacy and mine will always be grassroots and making noise in and around D.C.

I believe Trumpcare was only stopped because of incredible grassroots advocacy. While I’ve never claimed the ACA was perfect or the ultimate answer, I do believe repealing the ACA would have destroyed many lives and forced many more families with diabetes to pay exorbitant insulin prices out of pocket. Because of that, I won’t stop fighting for the ACA but most importantly, I won’t’ stop fighting for a better healthcare solution for our country. I won’t stop fighting for lower insulin prices. I won’t stop fighting for myself, my family, my friends, the diabetes community as a whole and every single other person whose life is at risk when accessible and affordable healthcare isn’t guaranteed.