• Fox


Updated: Jul 1, 2020

If you didn't catch Jennifer Berman on the E Powered Benefits Coffee Break session last week, you likely missed some stellar compliance info. And, while you might think compliance is a dry topic, this female leader has managed to move complex subject matter into an easily digestible conversation.

Jenn is the CEO of MZQ Consulting and is affectionately known as the 'compliance maven' among her peers. But when I met Jenn, I noticed something quite compelling about her - a strength that was largely silent and yet permeated the atmosphere between us as we spoke. I wanted to find out more about this marvelous maven so we asked if she'd share her journey into leadership with our community.

"Waking up every morning has always been a game of roulette for me. It could be a great day, or it could be one mired in pain—in which case I’ll have to power through and make it a good day.

It is only in the past year or so, as I rapidly approach middle age, that I’ve grown to understand that my body is truly not “normal.” You see, when you are born with a rare, invisible, genetic disease you don’t know that your pain, nausea or tendency to contract infectious diseases isn’t all in your head. For many years, in spite of many doctor’s appointments no one could find anything wrong. Eventually I wracked up the “diagnoses”: growing pains, hypochondria, laziness, etc., etc.

Certain medical professionals were more open to the unknown than others. In one particularly famous incident in my life history—after a comprehensive work-up at the National Institutes of Health, the team there reported back to my mother: “Well, Mrs. Spiegel, there is something ‘off’ about your daughter, but we don’t know what it is. We are very sorry, but we can’t help.” So, we returned home to a life where I was never treated as disabled or in need of help—just as the girl who refused to participate.

By adolescence I was pretty sure it was all in my head, even though on some days the pain was so bad that I couldn’t push through. But I also knew that some days I felt okay, or even good. On those days, I was a woman on a mission—I had something to prove. Other days, I simply couldn’t get out of bed. And so, I learned to never, ever procrastinate.

I combined a “seize the day” spirit with a hard work ethic and a “can-do” attitude. The years flew by in that mode. I finished college and law school at the University of Pennsylvania, and spent over seven years at an elite corporate law firm (and gave birth to two babies in the process). Then I launched MZQ Consulting. It certainly wasn’t easy-- there were a lot of days when I would get home from work and literally collapse. There were a few times where I pushed my body so hard I landed myself in the hospital. I took more pain medication than I would like to admit. But I did it, and in the process, I built a career and a company that I am truly proud of.

While I was building my career and family and pushing my body too much on occasion, I also had a secret hobby--late-night Internet searching for a diagnosis. In the summer of 2019, I finally got an appointment with a doctor specializing in a rare genetic condition called Ehlers-Danlos Syndrome. Even though all my efforts at solving this problem myself had previously failed, I had a research-based theory about what might explain the mysterious symptoms I’ve had all of my life. Still, I went to the doctor terrified that this hypothesis too would be wrong.

Much to my relief, it wasn’t wrong. I was officially diagnosed with Ehlers-Danlos Syndrome, a genetic deficiency with my collagen that in addition to making my physical body exceptionally unstable also explained the symptoms I had been experiencing my entire life. They were in fact very real.

A diagnosis, of course, wasn’t the end of the story – months of hard rehabilitation ensued. I got a lot better. It’s not done yet—it never will be—but I’ll keep at it. I’ve also had to admit that there are some limitations. Now, when I fly around the country to speak at employee benefits conferences, I do it in a wheelchair.

Can I walk? Absolutely! I’m stronger today than I have ever been. My body just can’t take hours of traveling without assistance. It just can’t. So, I have found ways to work a little bit smarter, and I’ve learned to place value on what I need for me to be my best self (or, at least I’m trying harder at it). Let me tell you, there is nothing more embarrassing than having to withstand the glares you get in a public airport when you stand up from your wheelchair to run really quickly to the bathroom. In learning to bear the looks I get while in my wheelchair with grace, I’ve found a level of peace within myself that I never anticipated.

I often ask myself, what life might have been like had I not faced this journey? What if I had been born with genes that were a little bit more “normal?” What if they had known more about EDS when I was young? I mean, it looks like my daughter has it too, and she’s living a very different life. The thing is, those aren’t things I could control. This struggle has defined who I am as a person, and it’s taught me to be who I am as a professional.

So, as I stare down 40, I find myself with a family, career, and a journey that bring me great pride. But more than that with true excitement for the next chapter. This time, I want to address the cost of this whole crazy situation—because, I’ve had to pay out of pocket for much of my recovery. Perhaps it’s time for me to get to work on fixing this health care system of ours!"


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