Always Dreaming of a Better Life with a Pre-existing Condition

A little more than a week ago I had the AC on and was basking in the midday sun. I felt excited for the day even if my new social energy pushed me to physical exhaustion. Life seemed full of hope again.

Then the work week arrived. And rumors of a new health care bill surfaced — one that would destroy protections for those with pre-existing conditions. I reached out to my representative. I spent a troubling amount of time trolling Twitter and tweeting about advocacy opportunities as well as sharing my own story.

On Thursday morning, a few hours before the bill was put to a vote, I went to the bathroom and cried. I just let it all out — the anxiety of a future that goes back to a time where I had to struggle to access the supplies I needed to live; the emotional devastation of living in a country that does not support my right to live; and the empathy for all those who may die (possibly millions) as a result of this bill.

Even though I knew it wasn’t true, I wondered if there was any worth to my life? If I was going to have to continue to fight for my right to live, then did I have any value at all? Was it really worth all of this stress, anguish, frustration and demoralization?

The House passed that bill. And they celebrated with cartons of beer.


It felt like such a slap in the face. Here I was crying, and our representatives were celebrating the fact that my life — our lives — were not worth it. So I cried some more. And then I left town (as I had already planned to do) to visit family in Louisville for the Kentucky Derby.

Returning Home

I worried about returning to a red state when I was already emotionally vulnerable to current political events. So before I left, I reached out to my parents and asked that we not discuss this bill as it was still too emotionally upsetting for me.

But what I found when I returned to my hometown was something rather unexpected (and possibly a bit short-sighted on my part).

My family and friends felt the same frustration and disappointment I felt when I left DC — they were abhorred by this bill and the fact that it didn’t support my life as well as many others. Nobody was happy with Washington. And I may have never known this had I not reached out.

This revelation alone is not what re-invigorated me during my visit back to Kentucky. It was the level of support shown by my family and friends. Regardless of our differences, we recognize the value in our relationships with one another and work hard to maintain those relationships.

It is that love that keeps me coming back, that allows me to see that my life is worth it.

My parents have hosted a Kentucky Derby party every year since 1994. And at this Derby party, overwhelmed by social anxiety and new faces, I tried to avoid any inquiries into my single status and the current state of health care. But one family member made a joke about how I needed to gain some weight.

And then my grandpa chimed in: “No she doesn’t. You are perfect just the way you are.” That comment alone really struck a chord. Even though I’ve worked hard over the past few years to accept myself for who I am and cut down on the self-criticism, hearing someone else say it gave my perspective a whole new meaning. And it reaffirmed the value I sometimes forget to place on myself.

Of course this was before he jokingly added, “we’ve got too many big people in this family as it is.”

I’ll take it anyway.

Always Dreaming

There is still hope. The bill still needs to go to the Senate, and it’s doubtful it will pass in its current state. But I encourage you to keep advocating for those with pre-existing conditions. I’ve already reached out to my Senator on behalf of Type 1 diabetes. If you are interested in contacting your Senator, JDRF provides an easy way to do so.

Keep dreaming.


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