Don’t leave the good parts out: Meet @jlharsh

JOHN: What brought you to Mayo Clinic Connect? 

@jlharsh: I don’t remember joining Mayo Clinic Connect. My profile says I’ve been here since February 2022 and I know this was after an extensive visit to Mayo Clinic and exhausting local options. I was considering Mayo Clinic’s offer for a two-week bowel evacuation program. Their recommendation made no sense to me, but they were confident, and I was desperate. I went through the program and bought into trusting a process. It was care that I could not have imagined when I was told they wanted to help me. Specifically, they knew what was wrong, but didn’t know what to do about it. They focused on protecting my heart, then tackled one symptom at a time. “It will be a marathon,” I was told.

I had hit a systemic circulation crisis and didn’t fit in any boxes. I also felt like I lost my identity in my medical record and felt totally isolated. I am still not sure what all is going on but now my doctors recommend, I implement, we experience incremental improvement. It was the most horrific and fascinating experience I could ever imagine.

I found support groups for specific conditions elsewhere online. They were helpful but required a lot of weeding through comments. Since systemic means “all over your body” it became too much to manage once I figured out it all had to be related somehow. 

JOHN: What motivates you to take part in the community?

@jlharsh: I need community and I haven’t had it. Simply functioning has been a struggle, and consuming and not worth it if that’s all life is. I have found that generally, people judge. We decide what is wrong with someone by asking their diagnosis. We learn how serious it is by how doctors are treating you. I look fine and there has been no diagnosis, which has made life super isolating. 

Joining Mayo Clinic Connect changed my entire outlook because I immediately figured out I was not alone. We are a group of people trying to live the best lives we can and happy to do it together. 

 JOHN: What about Mayo Clinic Connect makes you feel comfortable to share and to be open with the community?

@jlharsh: I love to learn and I love to encourage. Mayo Clinic Connect feels like an extension of Mayo Clinic in that it is a safe place in every sense of the word. It provides a positive, nonjudgmental space that cuts out the noise of what doesn’t matter (not sure how to say this). It opens up space where I can encourage and recognize I have value. It has been my experience that the more open I am on Mayo Clinic Connect, the more meaningful conversation I find myself in.

JOHN: What support groups do you participate in?

@jlharsh: Currently I hang out in Heart & Blood Health, Digestive Health, and Visiting Mayo Clinic groups. Since my symptoms aren’t isolated to one group, I tend to follow bunny trails to other discussions that fit what I am experiencing. It’s all stinking connected. I also dabble in groups related to the conditions my elderly parents are dealing with.

JOHN: Tell us about a meaningful moment on Mayo Clinic Connect.

@jlharsh: Well, I take Mayo Clinic Connect with me. You never know when you make a difference for someone. A couple of instances come to mind. 

Recently, my husband and I went to a 4th of July gathering. I asked a young teacher how she was spending her summer. She said that she is caring for her dad because her mom does not help. A recent discussion of a very similar situation came to mind -  How to care for mom when dad does not help? I told her she is not alone. She was encouraged to hear about Mayo Clinic Connect and already talking about how it will help her. 

Every once in a while I read a comment that feels familiar to my situation. Helping others by sharing my experiences boosts my confidence a tad. One comment by a member, @tarmansbk,  resonates with me, “I have termite damage. It’s all on the inside.” In another situation, it felt good to walk virtually beside a new member who is navigating care options for a spouse with a new Alzheimer’s diagnosis.

JOHN: What surprised you the most about Mayo Clinic Connect?

@jlharsh: Just how many people are dealing with health problems they don’t (yet) understand. 

JOHN: What energizes you, or how do you find balance in your life?

@jlharsh: My faith drives me, everything I do. I know that I am uniquely qualified for where I am in my life. I am encouraged and completely energized by providing kindness to someone who is hurting. 

For whatever reason, these situations find me. As an example, I casually met a hotel neighbor when I was in Rochester, MN for appointments. She seeked me out for support when her husband suffered a stroke during surgery and she found herself alone. She stayed in touch, and I saw her on my next two trips there. We had dinner together with her last night there and she told the waiter, “This is my person”. It happens over and over. 

A couple of songs are kinda my current theme-songs because they really do say everything I’m thinking. 

Better Than I Found It - Danny Gokey

https://www.youtube.com/watch?v=pQaWF_oEnaQ

“I just wanna be a light, every day and every night
And leave a better than I found it
A better than I found it
Leave a better than I found it, world!”

Then, The Good Parts sung by Andy Grammer 

https://www.youtube.com/watch?v=1Wk8ZRgXQnY 

“I'm sorry if I seem impatient
I'm not a fan of pleasantries
See, I get bored with the weather and what's in the news
The topics we all hide beneath
Could not care less about your day job
The gossip or ordinary stress
See, every relationship I've ever loved
It starts when someone says

Show me where it hurts and give me something real
And lead me to the part of you that never really heals
And say the words that burn when they leave your mouth
You tell me your story, but don't leave the good parts out

And tell me all about your failures
The little things that make you cry
And tell me the acts that you preach but cannot seem to practice
That leave you compromised

Show me where it hurts and give me something real
And lead me to the part of you that never really heals
And say the words that burn when they leave your mouth
You tell me your story, but don't leave the good parts out

I've seen your trophies, your highlight reels
You know I would love you still if you lost it all
And I like the castle that you have built
But are you asking still to let down the wall

But show me where it hurts and give me something real
And lead me to the part of you that never really heals
And say the words that burn when they leave your mouth
Tell me your story

And show me where it hurts, yeah
Oh to the part of you that never really heals
And show me where it hurts, woah
Tell me your story, but don't leave the good parts out
Don't leave the good parts out”

JOHN: Tell us about your favorite pastime or activity

@jlharsh: I have been eating a consistent and limited diet. My personality is to take this as a challenge, figure out what works well for me and how to learn to like it. It works. Now we stock our kitchen like a Food Network “Chopped” basket. Of course it runs in cycles, but I generally like figuring out how to be creative with limited resources. 

I take care of my plants. I watch our grandkids in their activities. We dabble together in food art, making snack plates together encouraging healthy food. I read. I never liked science, but I have been figuring out I actually love learning about what is happening with health. My parents would get so mad at me when I was young because my favorite word growing up was, “why”. I love it when I figure something out only to learn there are tenfold questions as a result.

JOHN: Do you have a favorite quote, life motto or personal mantra?

@jlharsh: Steady plodding 

JOHN: What food can you simply not resist?

@jlharsh: Coffee

JOHN: What do you love about where you live or vacation?

@jlharsh: I haven’t traveled much the past few years but I look forward to going to the beach. My favorite vacation is anywhere on the beachfront. Morning coffee, exercise, and exploring at the beach.

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