Embracing Adversity With Positivity, Optimism, Grace and Donuts -- A Q&A with Melissa Hayden

I started Bobproof because I wanted an opportunity to write about things outside of work.

Then – through work -- I met Melissa Hayden and realized it was time to make an exception.

Melissa, an accountant for HealthFitness, a Trustmark company, pairs an extraordinarily rare genetic condition with a relentlessly positive attitude that I only wish could be cloned.

She radiates optimism even though she’s been fighting for her life her entire life. Born more than two months premature, she’s endured 12 brain surgeries, three spinal fusions and a host of other issues that forced her to spend significant time in the hospital. Four of those brain surgeries came during what was supposed to be her junior year of college. For her first 24 years, she didn’t even know what her genetic condition was. Finally, in 2016, through the help of a geneticist, she learned she had FKBP14-related Ehlers-Danlos syndrome. She was only the 10^th person in the world at that time to have such a diagnosis, which was chronicled in a feature story in Reader’s Digest. 

This Q &A is a chance to learn more about Melissa’s unique outlook on life, how she overcame health challenges, why she gives back, her volunteer work, her love of donuts, and even the time she crashed a dance marathon with her soon-to-be husband Matt on her wedding day,

BP: What was it like to experience health problems without knowing the cause?

MH: It’s hard to answer this in the way you’d expect, because it has been all I’ve ever known. I grew up with chronic pain, so I just assumed everyone’s joints dislocated, and everyone had muscle and joint pain. As I grew older I recognized more that each symptom I was treating (heart issues, spine issues, joint, eye, hearing, pain issues) was due to this undiagnosed syndrome. I was always labeled as an “undiagnosed genetic mutation” which made me feel like an alien.

BP: Describe your emotions when you finally learned the cause?

MH: I gave up on my genetic doctor for a few years in my (sassy) teens, because I was tired of being poked, prodded, and “ogled” at by medical students with no answers in my favor. When I did take a chance on them again, they offered another blood test for new conditions to test for, and while I was very skeptical, I just let them go ahead and try. I left the office that day laughing that we’d get another wasted test back with no diagnosis. To my shock at my next appointment, the geneticist walked in and said, “we found it; we have a diagnosis.” It was a very surreal moment. All of a sudden I fit in a box, albeit a small box with fewer than 20 people in the world, but I finally felt like I fit in somewhere. Someone else could relate to what I was going through and feeling, and it was the best feeling.

BP: What perspective has your health challenges provided?

MH: My health has given me the biggest blessing in disguise I think, which is a unique perspective on life. I am all too aware that things can change in an instant, and so I try and truly live every day to its fullest. I don’t get as stressed about things at work, because that’s all it is. Just work, and in the big scheme of things, if an email I send isn’t perfect, or if a spreadsheet gets sent out a day later, no one is going to get hurt. Life is too short to let small things ruin your day. I make sure to pay attention to the little things: the sunrises, sunsets, take a minute to enjoy the fresh air, eat that second donut if you want it, and just try to do what makes you happy.

BP: How do you avoid or limit the time you spend thinking about potential future health challenges?

MH: I’m surprisingly good at this because life is just too short, I can’t predict the future and I can’t waste time worrying about things I cannot control. I see my doctors every year, take the medicines needed to help prolong my life, and then just let everything else go. After surgeries, usually the recovery time is harder than the day or two after when you’re in the hospital. Recovery at home can be the most frustrating when you’re still recuperating but also antsy to get back out of the house. I give myself a day to be crabby or feel sorry for myself and then that is it.

BP: Do you have a motto or philosophy of life?

MH: Today, like every day, contains at least one thing that will make you light up. If you haven’t found it yet, be on the lookout. And if you’ve found it, find another. YOLO= You Only Live Once

BP: Why did you start your Facebook Group and how meaningful has it been for you?

MH: After learning my diagnosis, I immediately went home and put out a page on Facebook, hoping that someone else was searching the name of my new found diagnosis so that I could connect with them. The diagnosis didn’t change much for me since I was so old, but it allowed me to find other families with young children, and I’ve been able to help connect them with resources and give advice to help ease their anxieties. Having support can mean all the difference when you’re struggling with health challenges.

I started the group knowing there had to be other parents out there just like my mom, searching for answers and ways to help their children with the diagnosis but coming up blank. There are only 2 research papers in the world on this condition. So I knew that if other moms needed someone to talk to, that I could be there. I have been blessed to find close to ten families and now they’re all supporting each other. Asking each other questions, sending pictures and updates as we celebrate milestones, etc. It’s been so great for everyone, and so fun for me to finally see someone else just like me, which for 26 years, I’d never met anyone like me.

BP: You are such an active volunteer. Tell us about some of your volunteer activities?  

MH: The running theme with my volunteer efforts are ways for me to give back a little of what has been given to me over the years.  My parents stayed probably close to 75 plus nights at the Ronald McDonald house when I was in the hospital. My family also gets together most years to serve a meal to all of the families staying there as a way to give back. The Children’s Miracle Network has basically given me my life, when you really think about it. Lurie Children’s Hospital in Chicago is a Children’s Miracle Network hospital, and they have saved my life time and time again. I can’t ever repay them for that, so instead I try and help other kids and families that are there, going through the hardest days of their lives. Small things can make the biggest difference to someone with a child in the hospital, as I remember myself. Receiving a new toy, having a volunteer come spend time with me in my room when I was going crazy being stuck in a room for days on end, or having a therapy dog come to visit all were things that the hospital couldn’t have given me without other volunteer efforts. I often now bring blankets, toys, or small crafts that kids can play with at the bedside to help stock Lurie’s “toy closet.” Being a Peerwise Mentor for Lurie Children’s Hospital has made the biggest difference in my life. It absolutely fills my bucket to the brim when I am able to help others, especially when they’re in a scary situation that they don’t have others to talk to about. Knowing I can help ease a mom’s fears, or help explain a scary surgery to a child to help make them understand what is happening and how they can deal with what is to come make’s it feel like some of my struggles were worth it.

BP: Open Heart Magic sounds fascinating. What can you tell us about it?

MH: Open Heart Magic also has become a part of our family, they are a nonprofit in Chicago (and now expanding to places like Michigan!) who trains magicians to do magic at the bedside for kids that couldn’t otherwise get down to the playrooms available. They first came to do magic for me during one of the worst years of my life, and the very worst hospital stay of my life. I had been in the hospital almost a month, I had almost lost my life and my family had said their goodbyes just in case, and I was SO weak after being in a coma for a few weeks. After having doctor after doctor come in to my room, it was a breath of fresh air to have someone fun walk in the door. They didn’t want to poke or prod at me, but they asked if I wanted to see some magic. For a few minutes, I forgot where I was and what I was feeling, and it was amazing. We were hooked from the first time they came, and over the years when I was in the hospital I would always look forward to their visits. I wrote them a thank you note once, and after they asked me to speak at one of their events to share my story which was so special. Years later, my mom has trained to become a magician and she is now doing magic for kids in the hospital too!

BP: On your wedding day, I hear you “crashed” a Dance Marathon in full wedding garb at your alma mater, St. Norbert College in Green Bay.

MH: When I found out the dance marathon was on our wedding day, I knew we had to go. I’m a dance marathon addict! The day began by spending time with some of the brightest lights in my life; my best friends, my mom and mother-in-law. We all had such a great fun morning, and then I got to go see my future husband where we first started dating, and we got to crash the Dance Marathon (proceeds from Dance Marathons support Children’s Miracle Network Hospitals). The Dance Marathon days were some of my very best memories from college and one of the things I am most proud of from my college years, so to be able to incorporate that into our wedding was just magical. How could you not say that it was all meant to be? After that, we got to celebrate all night with our friends and family, and it was all just perfect. I couldn’t have asked for a better day. It was filled with laughter, love, and donuts (in place of wedding cake) - what more do you need?”

BP: What are your favorite ways to relax?

MH: Matt and I are both very busy people, we hardly ever just sit on the couch for a weekend as much as we’d like to sometime. And with my health, relaxing comings in many different forms depending on the day. I LOVE to cook, so when I can, there’s nothing better than spending a Saturday making a good risotto or paella. Matt and I also love doing bigger cooking “projects” when we can. We make homemade pasta sauce every year, and it’s an entire weekend thing. We go to the farmers market and grab close to 30 pounds of tomatoes, and spend the day cleaning/peeling/cooking the tomatoes and then packaging the sauces. This year we also took on the maple syrup business, so the last few weeks have been all about sap: we tapped the trees, collect the sap, and boil it for hours and hours until we get syrup! Forty gallons of sap makes about a gallon of syrup, and it takes us a good 6-7 hours to get from sap to syrup so we’ve been getting a lot of quality time together throwing sap everywhere J There are some days that my body just doesn’t cooperate like I’d like so there are times that we work on puzzles, or read together. We also haven’t figured out the “adulting” thing yet, so the nerf guns in our house get quite a bit of use still, and there’s always the occasional night when we decide we need to blow up the tent in our living room and go “camping” just for fun. We also love visiting family, so some weekends we drive up to Michigan or down to Illinois to visit our relatives.

BP: Thanks Melissa. For more on Melissa, check out this Reader’s Digest story as well as first-person account of why she crashed a Dance Marathon on her wedding day. More information about Open Heart Magic can be found here.

A Logo Unlike Any Other

In my debut blog post, I listed Bobproof examples (the terror of opening a juice box on demand, not babyproofing the house because it would Bobproofing it) - you get the gist.

As many of you know, and as proven conclusively in high school geometry, I am a word person to the core.

Which, brings me to the latest example to add to the Bobproof list – the Masters logo.

For almost three decades now, the Masters has been appointment television for me. From Tiger’s win for the ages in 1997 to his second win for the ages Sunday (more thoughts on that next week), the Masters is the tournament I most look forward to. I’ve read books about the tournament, could tell you something about every hole on the ‘second nine’, and can easily lose myself in a Masters YouTube rabbit hole during the long winter months.

As for the Masters logo – prominent enough to be recognizable to many non-golf fans -- I never gave it too much thought. When it came across the TV or was plastered on someone’s hat, I saw what looked to me like a heavily undulated green with the pin tucked front-right (to be totally honest, I might have thought how I would attack the pin – a high, soft fade so that I wasn’t faced with a crazy-fast downhill putt).

Two years ago that all changed.

I was reading a book to my then 5-year-old son Liam that included a picture of the Masters logo. Liam – who has always enjoyed pictures and thankfully does not have my sense of direction – proceeded to tell me that the tournament was played in Georgia.

I was stunned.

How could he look at a putting green and know where the tournament was played.

So I asked him. He replied earnestly, “Daddy, the logo is a map of the United States and the flag is where Georgia is.”

What? Was I talking to a geographic savant? I asked him to explain again. This time, he just said, “Daddy,” as if why he would need to repeat something so obvious.

I looked at the logo again. Sure enough, the kid was right. It doesn’t really look like a green. In fact, in a way that is obvious to a 5-year-old, it is a map of our country.

I went online to see if anyone else was confused, but it turned out my original interpretation of the logo was a distinctly Bobproof one. In fact, according to a story in The New Republic, the logo, “is unmistakably a rendering of the continental United States.”

The article notes that the map on the logo is actually “misshapen,” but the tradition bound club has no designs on changing it – the “cartographers” outrage notwithstanding.

Even more reason why it is a logo unlike any other.