What happens when you quit your job? A life update.

In two days, I will turn 40.  I sit in Mendoza, Argentina and wonder if this was how my life was supposed to turn out, or did I so strongly will for something different that I landed myself on a path moving so rapidly and intensely that I can’t get off.  I can’t even remember what I thought my future looked like a year ago, or two years ago.  I suppose if I’ve learned nothing else in my 40 years, it’s that it never turns out the way we think it will.  But man, this is a great life!

I think back to 654 days ago – my last day working in corporate America.  It was one of the absolute most scary days of my life.  I had no idea what I was going to do after I was done traveling, and I didn’t know if things would ‘work out.’  Months after leaving, I talked to mentors and peers, searching for some solid plan to move me forward.  Of course, no one could tell me exactly what to do.  The advice I always got was, “It will work out.  If you had the guts to leave your job, you can do anything.”

I still frequently wonder if they are right.  Maybe it won’t work out, but I have to believe that the strong pull I’ve been having to do good in this world will turn into something wonderful and grand.  So I will keep going, because I am so fortunate to be able to.  And because I have done some really cool things this past year.  And I’m not just talking about becoming a Guinness World Record Holder (which is pretty bad ass)!

This past week I took Spanish language placement test.  I passed into the C1 level, which is the ‘Fluent Speaker’ level.  There’s only one level higher, and that’s the ‘Native Speaker’ level.  When I landed in Argentina 10 months ago, I spent most of my nights researching how to learn a language faster.  It turns out the best way to learn it is to just do it. 

I cried with my professors and there were days when I told Tony I just wanted to ‘go home.’  It was really, really hard.  But…I can actually call myself bilingual, and for this farmgirl from rural Ohio, that feels really cool. 

I have no idea what I’m going to do with this new skill.  I’ve thought about teaching English to Spanish speakers when I get back to the US, or leading a Spanish-language meetup.  But what I do know is that I am better because of this experience, my mind is stronger, and I understand an entire part of our world that I could have never fully experienced or known had I not dropped myself into a strange place where no one was like me.

What I haven’t written about publicly is something new to me since I left my job all those months ago.  I was six months into my travels when I had this sudden desire to know what my medical diagnosis is.  My family and I have always been told it’s some sort of skeletal dysplasia, and most commonly we were told that I have diastrophic dwarfism.  This diagnosis never fit, mostly because I am at least five foot tall and people with diastrophic dwarfism are much shorter.

My family and I have done genetic testing many times.  When I was a child (several times) and again when 23andme.com became a commodity.  The results were always inconclusive.  There was never a genetic (DNA) diagnosis for me.  I started to accept that science was just not advanced enough, and I may never know what this thing – this disability – that has caused me so much joy and so much heartache is.  I started to live with the uncertainty and it became a comfortable thing for me.  I suppose that could have led me to leave my job and enter into the uncertain.  I was just used to not knowing how things would turn out.

But on a random day in October 2022, while visiting some islands in the South Pacific, I had a strong desire to know what my diagnosis was.  There must be some irony in the fact that I was in a place with little WiFi when I had this urge to research, extensively, everything about the status of the human genome project.  But when I was able to get in front of my computer, I found loads and loads of information.  I ordered a more advanced, at-home DNA kit that specifically screened for 1,200 rare diseases.  This was it – I knew that in no more than 3 months, I would finally have a diagnosis.

I waited for the results, and almost a year ago to this day, I received a report in my email telling me that I didn’t have any of the rare diseases they scanned for.  And I didn’t have diastrophic dwarfism.  I was crushed.  How could I not have ‘something?’  I can’t walk!  And the one thing that I kind of thought I might have had is no longer on the table.

I spent weeks researching geneticists around the country, reaching out to a few who could offer no solution.  I finally reached a team at Johns Hopkins who wanted to see me.  “We have a long wait list,” they said, “but if you can get here in May, we will squeeze you in.”

I waited for my appointment, knowing that they would be unlikely to offer an explanation without more DNA testing.  In May 2023, I swabbed my mouth yet again and had my saliva sent in for additional DNA testing.  And I waited, uncertain that there was even an answer.

My initial results came back without a diagnosis.  There was one variant, though, that the lab wanted to see if anyone else in my family had.  I waited for several more weeks as each of my family members submitted their DNA.

In August 2023, I received a diagnosis.  Recessive Autosomal Multiple Epiphyseal Dysplasia, also known as rMED.  I know, that’s a mouthful!

“We’d like to have you come in and meet with our entire team of specialists,” they told me.  I couldn’t wait to learn more about rMED and my treatment options.

Just two weeks ago, I got to meet my new team of medical professionals.  I haven’t had a team of doctors in years.  The doctors I saw as a child have since retired and I haven’t needed care related to my disorder for over 10 years.

I spent two days in Baltimore, MD meeting with neurologists, orthopedists, geneticists, and audiologists.  I learned that one of the genetic variants I received has never been seen before in any genetic or DNA database and has never been published in literature.  Quite simply, no medical professional or researcher has ever seen this variant.  (That’s not to say that it doesn’t exist elsewhere, it’s just never been seen in a DNA sample before).

I challenged my geneticist on this.  “How can I have rMED if this is a brand-new, never-been-seen-before variant?  Isn’t this an entirely new disorder then?”  We spent over an hour talking about the different skeletal dysplasias that exist, and how they all lay on a spectrum.  She tells me that I’m “somewhere between rMED and diastrophic dysplasia, and maybe a little of both.”

I feel like I’m back to square one.  I’m closer to a diagnosis, but what the heck is this brand new variant?  And what does that mean for me?

And so I go back to being a little uncertain.  But that’s comfortable for me.  I like it here, in the unknown.

It has been an emotional journey – an unexpected journey – to learn more about this disability that consumes so much of my life.  But it feels good, to have an entire team of medical professionals supporting me.  God knows I wouldn’t have ever expected to find that when I sought out on a soul-searching journey.

I still can’t tell you exactly what my future holds.  I don’t think any of us can actually do that, no matter how well our plans are laid out.  But I’m so excited for what I am doing now.

I’m deep into work on the book I started a year ago about my travel and medical journeys, with the ending completely unknown at the time, and having changed several times since I started it.  I want so badly for it to be published in 2024, and I think it will actually happen.  It’s a hell of a story!

I’ve been invited to speak at Extraordinary Travel Festival in November of this year in Bangkok, Thailand.  And I’ll be doing my very first TEDx Talk in Tullahoma, TN in April.  I’m also spoken at and will be speaking at several schools, which are my absolute favorite places to speak!

During my last visit to Johns Hopkins, we talked a lot about how my bones are holding up.  I’ve already undergone a double hip replacement, and it’s been life changing.  I know I need to take care of my body, and as my knees have started to hurt in recent months, they recommended I undergo a few months of physical therapy.

I don’t know if it was a sign that I needed to be back in the US for a few months or if life just happens and we have to do things we don’t always want to, but in two weeks Tony and I will be back in the US for an indefinite period of time so I can take care of myself. 

For a week after making the decision, I was super sad that this chapter was coming to an end, but I know that the efforts I put in now will allow me to get back on the road in a few months and see more of the world while I still can.

And while I’m doing that, I’m going to deep dive into finishing my doctorate, which I started about two years ago and have made tiny strides towards completing.  My research is focused on positive psychology in the workplace, and like so many other things, I don’t know where that will take me.  Maybe it’s another book, or an opportunity to teach at a university, or who the heck knows.  But I’m having fun with it and I know it can turn into something good.

I have a ton of travel content and stories from around the world that I will finally be able to get into words and share with you, and I cannot wait to do that!

I am involved with two incredible non-profit organizations.  Journeyable is a non-profit organization dedicated to making travel accessible for everyone through empowerment and stories.  And boy, do I have stories!

And finally, I have become an Ambassador for Free Wheelchair Mission, a non-profit organization focused on providing wheelchairs to people in need around the world.  One donation of $96 provides a wheelchair to a person in need in a developing country.

For months, I have been grappling with how to give back to the world.  I didn’t know how to do that, but when I was introduced to this organization, it all made sense.  I have experienced firsthand the poverty and struggle that so many people in our world are experiencing every day, and I’ve also experienced firsthand the great fortune of always having a wheelchair that allows me to go to the bathroom, or the supermarket, or to school.  I want everyone in the world to have the gift of mobility.

If you are in a position to donate, you can click here.

So, I can’t tell you when my next trip will be, but I have given myself the gift of two trips before November, when I know I will be in Asia.  I have also given myself the most important thing I can give myself, and that is taking care of me.  And while I do that, I’ll live in the space I’m most comfortable with.  Uncertainty.  But this time, I know that uncertainty is going to bring me to great places.  I’m so glad I made that scary jump 654 days ago.