Guest Post: Being Your Own Medical Advocate

I am thrilled to welcome my friend Hannah Vaughn Setzer as a guest blogger today. We haven’t known each other long, but almost as soon as we met, we knew we had many things in common: love of social media, interest in fitness, and a desire to help people understand challenges people face in navigating the world of health care. Thank you, Hannah, I hope you’ll share more with us in the future.

Being Your Own Medical Advocate

This is a tough one. I’m not a parent. I believe with my whole heart that my parents and doctors made the best decisions they could at the time with the information they knew when I was growing up. Were some of those decisions not successful? Yes. Did some inflict more pain and hardship upon me? Yes. Am I resentful or angered by that? No.

I imagine it is the hardest thing on earth to see your child, or parent if you’re an adult caregiver, in pain and suffering and have to make decisions that medical professionals are presenting you. I’m in the in-between stage. I’m a fully functioning adult who gets to be my own medical advocate (while still calling my mama to help me remember facts or process things) for the first real time in my life. This is liberating and also can be scary. 

Several years ago I took my health into my own hands in the biggest way I probably ever will. Up until age 23 I was on canned, genetically made, pre-packaged formula for people with feeding tubes or other medical needs. Doctors advised my parents to put me on this from a very young age and admittedly it kept me alive. I was able to function and go to public school and participate in activities and camps and be social. It also made me incredibly sick often. We didn’t know it was the cause but it was certainly a catalyst for many infections and illnesses I had for my first 23 years. 

With the encouragement of some friends, when I was 23 I went off the formula. I started blending my own foods and trying to eat healthier real foods. It was a steep learning curve. My parents were not happy. I lost a lot of weight at a very rapid pace until we figured out a blended diet that worked for me to sustain my body. Five years later I am healthier than I’ve ever been, I eat real food, and instead of getting sick monthly I’ve been sick four times in those five years. 

While I don’t get sick often anymore, it is still very difficult when I do get sick. Medical students don’t study people like me in medical school. Your run-of-the-mill family doctor doesn’t know what to do with me when I am sick. I have to be my own advocate and tell them what is wrong, and tell them the treatment solution. I know my body well enough after 28 years to know what works and doesn’t work. I know exactly how it feels when I get an infection. I know what antibiotics are successful and which aren’t. I’m no longer a child. It’s no longer a guessing game. The scary part is over. My parents and doctors did all the hard work of diagnosing and figuring out what works best and now that I’m the advocate I just have to relay the message. 

Being a self-advocate doesn’t only apply to medical situations. I have to advocate for myself in new work environments. All throughout school my parents and I had to advocate for me. This world wasn’t built for people with disabilities or medical conditions, therefore the advocating never stops. I’m a Disability Rights Advocate and I teach people every day how to advocate for themselves. This ranges from parking lot access, asserting their rights to an interpreter, getting a driver’s license, and accessing their own middle school building.

It can be exhausting to have to fight every day for basic access and rights that the rest of the world is afforded, but the alternative is a life that may be sorely lacking in basic human necessities. Every time we advocate and educate new people and providers we aren’t just helping ourselves we are helping everyone, those behind and ahead of us to change the world. It can seem overwhelming and exhausting and pointless, but I’m here to promise you that it is not.

Keep fighting the good fight! 

Being Your Own Medical Advocate

A Note from Paula

I love the fact that the picture Hannah sent includes a print that says, “We can do hard things.” I first learned about Hannah and Feeding Tube Fitness when she went to visit my November 28 birthday-mate Lydia in the hospital. Lydia currently has a feeding tube (learn more about her/share support at her Facebook page or her GoFundMe), and Hannah wrote this in the Instagram caption:

I want her to grow up in a world where she sees and knows people like her who are pursuing all their dreams, kicking butt and taking names. I want her to know that she can do anything she wants in life, I want her to see athletes, models, and girls like her running the dang world.

Hannah and I ended up at the topic of medical advocacy for a variety of reasons. She has had her own road to take regarding learning to advocate for herself. Lydia’s parents have had a crash course in communicating Lydia’s needs to her medical professionals. I struggled to figure out what would help my mom (when quite a few things seemed to be geared toward the hospital’s expediency) during her final illness and to be assertive enough to make sure my father-in-law’s well-being was taken care of during his final years, not to mention my own adventures in electrophysiology.

If there’s one thing I know, it’s that medical advocacy (for ourselves and for those we love) is a “hard thing.” Thank you, Hannah, for sharing your story. It gives us all emotional ammunition for that “good fight.”

Find Hannah on Instagram at Feeding Tube Fitness and on Facebook, also at Feeding Tube Fitness!

Wife of one, Mom of two, Friend of many.

A Voice in an Unlikely Chorus

When I attend the Requiem of Resistance performance here in Tallahassee on March 25, I will be thinking especially of Edgar Krasa, a member of the chorus directed by Rafael Schächter, who conducted 15 performances of Verdi’s Requiem at the Terezin Concentration Camp.

Edgar died on February 7. He was a friend and mentor to my friend Corie Walsh, who shared this remembrance:

Edgar was 96 years old and a Holocaust survivor. I met Edgar when I was in high school and he was a spectacular influence on my career and my personal life. He was one of those people who held such light and joy that you couldn’t help but smile when you met him.

Edgar Krasa Tribute

A portrait of Edgar drawn by Leo Haas in Terezin, 1943. Photo Credit: The Terezin Music Foundation

Edgar was originally sent to Terezin, the show camp for the Red Cross, in 1941, where he survived as cook. He was on the very first transport there. Edgar lived in Terezin until 1944 when he was transported to Auschwitz. He then participated (and survived) the infamous Death March from Auschwitz by pretending to be dead. If you asked Edgar how he survived the Holocaust he wouldn’t say through perseverance, strength, or faith. Instead he would tell you that an onion saved his life.

At one point, when he was struggling and quite ill, he was out on work detail and he found a whole onion. He planned on stashing it in his uniform and sneaking it back to the barracks to feed two younger boys who he had been looking after. However at the end of his work detail, the guards called for a random search. Edgar knew he had to eat the onion before he was searched. So he ate the entire thing in a matter of minutes. Raw, like an apple. Then the next day, his illness and sores started to heal. Edgar credited that onion with saving his life and he continued to make onions a focal point through the rest of his cooking throughout his career.

This story tells three things about Edgar: his humor, his selflessness, and his strength.  Edgar wasn’t spectacular because he was a Holocaust survivor. He was spectacular because he was kind and because he dedicated his life to making the world a little bit more like him.

After surviving the Holocaust and emigrating to the US, Edgar ran a restaurant in Brookline MA and spent his free time and retirement speaking at schools and colleges.  The first time Edgar had me over to his house for dinner he made a huge spread for dinner including his signature baba ganoush and hummus. The meal concluded with Turkish coffee, which was not optional. According to Edgar, it would “put hair on your chest.” He would wink as he said this, recognizing that a hairy chest was not exactly a desirable quality for a woman.

As I grew older and busier, Edgar and I saw one another more infrequently. We would see each other annually at the gatherings for the Terezin Music Foundation, but I believe we remained friends. He spoke with the sincerity and conviction to make me believe that I was the only person in the room and perhaps the only person on the planet. He would grasp my hand and say “Corie my dear, how are you?” And he meant it. We would get on about my dating life, gossip, cooking, and our respective forays into activism.

Edgar was the unique sort of character that brushes into one’s life and has the capacity to change it. He taught me that there is no beauty in martyrdom, no humanity without equality, no life without humor, and no good cooking without onions. I will miss him dearly, but I will carry his spirit and his story forward. I hope you do the same.

***

For information about the Tallahassee performance jointly presented by the Tallahassee Symphony Orchestra, FAMU Concert Choir, Temple Israel, and Holocaust Education Resource Council, please click here. Proceeds from the concert benefit the Holocaust Education Resource Council.

To support the continuance of the music of Terezin, please consider donating to the Terezin Music Foundation.

Editor’s Note: In this piece by Steve Uhlfelder, he shares about his grandparents, who both died at Terezin, and his trip there.

Wife of one, Mom of two, Friend of many.

Suffer the Little Children

I am pleased to share a guest post from my friend Mandi about her experience of the time she and her family spent at the National September 11 Memorial and Museum.

Process Tragedy

I watched my 10-year-old and held my breath. We were standing in front of Ground Zero, the memorial for all those lost lives, where the names were engraved around that beautiful dark fountain. Above us, buildings rose up, construction was a constant sound, along with the not-too-distant traffic.

But inside the memorial park, it was like being in the eye of a hurricane. There was stillness and reverence.

And I had brought my ten-year-old son and seven-year-old daughter who seem to be fueled, most of the time, by equal parts adrenaline and chaos.

Process Tragedy

I had prepped them, of course. Ineptly, but I had prepped them. I talked about “bad guys” and airplanes and immense, nationwide sadness and fear.

Their questions were pointed:

“Did the bad guys get punished, Mama?”

“Of course, definitely,” I answered. But so did everyone else, I kept to myself.

“Did any kids die, Mama?”

“Yes, but they are in heaven now,” I said. And their families lived through hell, said the dark part of my soul.

There were so many things I didn’t tell them. I didn’t describe things that are etched into my brain, like how I came out of the shower that unforgettable morning, sat down on the edge of my bed in front of the TV news and didn’t move – other than to desperately dial friends’ numbers – the entire day. At 6 PM, I realized I was still wrapped in a towel.

I remember candles lining the sidewalks of the Los Angeles street where I lived, silent streets where stunned, lost people walked. Even the walking was strange – people don’t walk in L.A. But they did that day. Restaurants were quiet. Except in one, a man began singing “God Bless America” and people around the room joined in, in almost whispered tones.

You have your story, I’m sure. Full of strange disjointed details that don’t mean that much – and at the same time, mean everything.

I tried to distill things down for my kids in language that wouldn’t scare them, but would impart the seriousness of the day and the importance of the place. And as we approached the park, I was a little afraid, I’ll admit, that they would be silly, that they would come across as disrespectful, that they would be too loud or offend someone.

They approached the stone around the fountain where the names were engraved. They ran their fingers across the letters. They touched the water. My daughter began to loudly sound out the names. She was disappointed that I didn’t know any of those people.

Her brother turned to her. “Shhh!” he said. Then he laid his head down on the warm stone.

“What are you doing?” I asked him.

“Hugging them,” he said. And he rested his face against the names of the lost and closed his beautiful eyes.

Process Tragedy

Mandi Broadfoot is the homeschooling mom of two: a 10-year-old son with autism named Billy and a seven-year-old daughter named Willow.  She is also the Creative Director of Making Light Productions, a nonprofit dedicated to making the arts accessible to kids of all abilities, and you can find her blog posts here.

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Wife of one, Mom of two, Friend of many.