Wheels Travels: Recent Episodes
Renee Bruns
In this series, Renee tells her stories of visiting the world with a wheelchair and shares her dreams of visiting all 195 countries.
This story took place in October 2023…
We – my mom, my sister, and I – arrived at the La Paz, Bolivia airport around 2 am. We flew from Columbus, OH to New York to Bogota, Colombia, and finally to La Paz, Bolivia. We fumbled through the immigration process as immigration officers took our pictures and payments for our 30 day tourist visas.
We stepped out the door of the airport and found a taxi who drove us into the city. I had arranged for a two bedroom apartment in the heart of La Paz and advised the host that we would be arriving late. He confirmed that it was no problem and that a key would be inside a lockbox which would be locked securely on the fence near the building. He sent pictures of the lockbox with a video on how to open it, and directions on how to get into the apartment.
Our driver was young and friendly. He found the high rise building that we were staying in and patiently waited as we searched for the lockbox. I sat in the backseat of the car, not wanting him to drive away until we were securely inside. La Paz, Bolivia is certainly not the safest city in Latin America, and I didn’t want to be standing outside in a neighborhood I as unfamiliar with at 3 am.
My mom and Natalie searched and searched, looking at all of the fences near the building. They could not find it. They searched in bushes and around the corner. Nothing.
I messaged our host on WhatsApp but got no response. Our driver was getting impatient, naturally, because his meter had no way to charge us now that were at a standstill. He eventually insisted that he needed to leave and started to unpack our luggage from the car. I paid him and gave him a generous tip for his patience. But now we were standing on the sidewalk, in the pitch black of the night, three American woman with luggage and valuables and nowhere to go.
I tried to call our host but there was no answer. Of course there’s not. It’s 3 am! I thought to myself.
We stood near the entrance to the building and I pulled up Google Maps. There was a hotel around the corner and we decided this was our best option. We’d squeeze into a small bed if we had to. At this point, we just wanted to be inside where we knew it was safe. Plus, it was only about 40 degrees Fahrenheit and we were not dressed for the weather.
We walked just a few minutes and turned the corner. The street was lined with lamp posts, many which were not working. There was a hotel but it’s lobby was dark and it’s door was locked. The other stores and restaurants were all closed too. There were few people and it was incredibly eerie.
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I remembered the name of a hotel I almost booked before I found the apartment. Hotel Europa. It was a very nice hotel and, according to Google, it was still open. We didn’t know what else to do, so as soon as a taxi drove by, we flagged it down and I told him, using my limited Spanish, where we were going. We piled in the backseat, holding our bags as my wheelchair had taken up most of the trunk space.
I followed the map as we moved away from the city and saw that we were driving into the countryside. I started to wonder why we weren’t turning left at every intersection. My map clearly indicated that we needed to go left. And we needed to go left several blocks earlier.
I asked the driver, again in Spanish that I had only been learning for four months, why we weren’t going towards the hotel. I pointed this time at the map and he nodded, shaking his head with a bit of a smile. He mumbled something under his breath and turned around. Whew! I thought. Where were we even going?
About 15 minutes later, he pulled up to a very nice building, probably the nicest building in La Paz. He turned the corner towards the main entrance and I saw a dark lobby. Crap! I thought. What are we going to do? We have nowhere to stay, not even for a few hours until the sun comes up. And just as I was about to ask the taxi driver if we could stay at his house, my phone rang. It was our host.
He immediately apologized and told me that he was out at a birthday party. “If we can make it back to the apartment, he will help us in,” he promised.
“Ok, we have no other choice.” I explained to the taxi driver that we needed to go back to our apartment and we would pay whatever the cost was. He was content with this and we made the journey back.
We drove through what appeared to be the most dense part of La Paz, Bolivia. There was an immense amount of commotion. At the busiest intersection, we stopped at a stoplight as police on motorcycles flew around us, and I wondered where they were going. I was seated in the middle seat and I hoped that my mom and sister on either side of me were safe. Three women riding around in a taxi in La Paz, Bolivia at, now 4 am, just didn’t feel like the best place to be.
But alas, we arrived back to our apartment. Our host was standing outside with his sister and they were incredibly kind. He told us he arrived a few minutes before us and searched at the exact spot where the lockbox and key were placed. “They must have been stolen,” he told us. And I thought to myself, What a world….
“Don’t worry,” he said, “I will call my mother and she will send the spare key in a taxi to us. Can you wait ten minutes for it to come?”
I chuckled and joked, “Sure, we have nowhere else to go,” but also knew that it was the truth. We really didn’t have anywhere else to go. Every hotel was closed and it was getting really cold!
We huddled up near the front door of the building and chatted with our host, small talk, who was about my age, and his younger sister. I practiced my Spanish and they practiced their English. Thirty minutes later – not ten minutes as he suggested – a taxi pulled up and handed a box wrapped tightly in duct tape to our host. Inside was the key to our apartment.
We didn’t shower or even bother taking off most of our clothes. We’d been traveling for almost 24 hours. Instead, I crawled into bed with Natalie and fell asleep for five hours.
The next morning, around noon, we all awoke and wondered how the heck we ended up in a city in Latin America, without a place to stay and no one to call, but grateful that we were safe and that our host was so kind…and in this case, actually awake!
We walked through some of the main streets in La Paz, mostly in search of coffee, and found a café for lunch that was full of cute antiques. Bolivia is one of the poorest countries in South America and the infrastructure and upkeep of the city is representative of this. The city itself was not accessible. The streets were hilly and the sidewalks were questionably functional for a wheelchair. But we weren’t in Bolivia to see La Paz. La Paz was just a stopping point. The next morning we would fly out to Uyuni to see the infamous Bolivian Salt Flats, or salar de Uyunai, as they call them locally. But man, what a journey we were on already!
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In my last blog post, I introduced my new role as Ambassador for Free Wheelchair Mission. For more information, please click here. And for the month of March, please know that all donations are doubled. With one $96 donation, your generosity provides two wheelchairs to people in developing countries who don’t have access to mobility devices. There is a very special place in my heart for these people and I thank you in advance for the difference we are making together.
This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit wheelstravels.substack.com
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.
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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.
This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit wheelstravels.substack.com