How Staci Didn’t Let a Medical Condition Prevent Her Traveling

I first met Staci when she came to one of my meet-ups in NYC. She wanted to thank me for helping her travel the world. See, for her, it’s not as simple as just getting on a plane and going somewhere. Staci was born with a rare genetic condition that has left her deaf, with fused fingers, jaws, and a host of other medical issues. Determined to not sit on the sidelines, Staci has worked hard to overcome the obstacles before her so that she can make her travel dreams a reality. So, without further ado, here’s Staci!

Nomadic Matt: Hi Staci! Tell us about yourself!
Staci: My name is Staci and I’m 28 years old. I happen to have Nager syndrome, a super rare genetic condition wherein I was born with fused jaws, fused elbows, four fingers, and deafness, to name some fun facts about it. I’ve had many surgeries to correct a lot of issues and increase my quality of life.

I was born in Seattle and moved to an incredibly rural town in New York when I was ten. I’ve always had an interest in languages and other cultures. Even though I’m deaf, I easily excelled in Spanish past my third-grade hearing classmates because I found it fun and challenging. My other loves are history and art and yes, they got combined into a bachelor’s in art history and museum professions.

I like anything that challenges me, and I hate being stagnant.

How did you get into travel?
When I was growing up, my family made various trips around the US, but it wasn’t until my senior year at a small high school for the deaf that I went to Italy and Greece with the senior and junior classes. There, I finally experienced what it’s like to travel, even though I felt stifled by the chaperones and the itinerary. But it gave me a taste, and I wanted more. I became addicted to the idea of freedom.

In 2010, I was supposed to go to Montreal with a friend for spring break, but she had to drop out. I went ahead anyway and experienced the freedom of solo travel: I could do whatever I wanted without any set plans. I loved it.

I took off for Germany, in March 2011, which kick-started my months-long trip through Europe. I didn’t tell my family for a few weeks, because I didn’t want to be discouraged and made to stay home. I explored Germany, Austria, Slovenia, Croatia, Bosnia, and Serbia (I easily fell in love with Belgrade and stayed there for two months) until I had to return home in August due to a broken arm.

In 2012, I went to Nicaragua for spring break. It was my first taste of Latin America, and I knew I wanted to learn more Spanish. Then in 2013 and 2014, I went to Mexico, which quickly became my favorite country—one that I want to move to in the future. I felt connected there and I could be as independent as I wished. It was also easy to get more of my special food at a large grocery store, even if it was expensive compared to local food. In 2015, I headed to Ecuador on spring break, and in 2016, I found a cheap flight to Iceland—seeing the northern lights was easily the highlight of my week there.

2017 so far has featured a birthday trip to the Philippines, my first Asian country. Recently I spent a month in Mexico visiting my friends and hanging out like a local.

What’s been the biggest lesson so far?
Budgeting. I had zero ideas about budgeting on my first huge trip and overspent so much. I have gotten better with it, but I still struggle. For example, my mom had to help me with a $130 domestic flight in Iceland because I was so horrible at budgeting.

Another struggle is overpacking. Even if I manage to pack a just week’s worth of clothes, it’s too much, because I have to also bring many bottles of my special food.

How did you fix these mistakes? How did you get better at them?
Well, as for budgeting, I learned that I need more money than I thought, so I saved more. Now I also tend to focus on places that are cheap for the most part, and if my original plans fall through, I have backup plans so I don’t have to spend unexpectedly or borrow money. I have gotten better with money, but I do still slip up.

When it comes to packing, I try my best to pack only 3-4 bottoms and several dresses, but I still have a tendency to pack too many shirts. Being short in height, a lot of my clothes are on the small side, which it makes it easy to overpack my backpack. I do try to pack two pairs of shoes max, besides flip-flops, but my favorite waterproof Dr. Martens shoes definitely take up a lot of room when I’m not wearing them. I stuff socks into my shoes, and I always roll my clothes.

Since I do have a habit of going shopping while traveling, I try to not pack too much, only to end up with an even heavier backpack when I return. When I was in Europe the first time, I shipped things home because my backpack was getting heavy with stuff I got for my family and with cold-weather clothes I no longer needed in warmer weather. Now, I basically layer as much as I can if heading to a cooler place.

What resources are out there for deaf travelers?
Seek the World by Calvin Young is a good resource for deaf travelers since he is deaf himself. He has a very active Facebook page, and he shows the different finger-spellings and signs of various countries. He also links to other helpful resources that encourage more deaf people to travel.

Another option is No Barriers by Joel Barish. He posts vlogs in which he meets deaf locals around the world and asks them about their jobs and lives. He’s also the founder of DeafNation, which is focused on deaf “language, culture, and pride.”

How do you communicate if sign language is different in every other language?
I always have my iPhone with me, but I also carry my notepad in my purse when using a phone is not ideal (safety or it not being charged). There’s also international sign language, but I don’t know it, although I do know a little bit of Mexican Sign Language. I also used to be able to speak, but a medical complication happened so at this moment, speaking is not possible. I am the worst at lip-reading, and even though I wear hearing aids, I just prefer to type things out.

You mentioned you have a fused jaw so it’s hard to eat. Do you only travel for short periods?How do you get around your medical needs when you travel? Do you just carry everything with you?
Nager syndrome makes eating difficult. I recently had surgery to open my jaws, and it was the first successful surgery to do that; however I still can’t eat solid food because I need therapy to get those unused muscles to work and other fun medical stuff.

All the challenges I faced were related to my food. Running out is easy to do, and I can’t just bring five boxes or 16 bottles since I travel solo and it would exceed the check-in weight limit for flights and make packing impossible for me. Everywhere in Europe, and even in some other countries, I cannot find my special food and I’m left without many options for nutrition due to my fused jaws. Soups cannot fill me up, and smoothies, milkshakes, etc. are not a solution either, because it’s too easy to lose weight, which is a very bad thing for me. It’s also extremely easy for me to choke on a small pieces of food, so I can’t just eat peas, rice, or corn, and I don’t like mashed potatoes.

My food is for nutrition purposes, and I drink about 7+ bottles a day to fill me up. Traveling for several months at a time depends on if I’m able to get my food or not. I cannot find Ensure Plus anywhere in Europe, whether at pharmacies or large grocery stores, so forget about my staying there long-term. At least in Mexico, I could find it easily and therefore can stay there for several months if I wish, but it’s expensive and the cost eats into my budget.

As for taking my food with me when I fly, I always hold up the TSA line because they need to test my food—and on occasion open a bottle (then I drink that bottle at my gate). I always carry a doctor’s note to show to the agents, and I try to be as pleasant as I can to make everything go smoother and quicker. When I had a layover in Taipei on the way to the Philippines, security and customs were more intense with my food, and I was nervous that they would not allow me to bring it with me even though I showed my doctor’s note, but luckily I had no issues.

I do carry everything with me when I travel. I love that international flights allow free checked bags so I take advantage of that, but even so, I often have no room for food in my checked backpack. So my carry-on bags are incredibly heavy with the many bottles I bring. If I do manage to pack food in my checked backpack, even when they’re stuffed in a garbage bag to prevent food from spilling all over my things, I always find the garbage bag ripped apart because of TSA inspections to make sure everything is OK.

Is there a big community of travelers with your condition that you can get support and information from?
Well, since my condition is incredibly rare and requires so many surgeries to improve our lives, it’s not a large group, probably hundreds of people. However, every two years, the Foundation for Nager and Miller Syndrome hosts a conference somewhere in America. I do not go to these much, because usually I’m one of very few who use ASL (or the only one), and often it’s hard to relate to others whose experiences are very different from mine. There’s also a private, international Facebook group for people with Nager syndrome and their family members, but since it’s a private group, I’m not going to share it because we don’t want bullying.

What have been some of your favorite experiences?
One of my favorite experiences was seeing the northern lights in Iceland. That week, it rained pretty much every day and snowed one day. But on my last day there, it was sunny for once and that night was clear, so I was able to see them. My other favorite experience was the Philippines, because it was an amazing country, even if I couldn’t stand the heat. I got to see tarsiers [a kind of primate] and the Chocolate Hills, and swam in the comfortable waters of Palawan.

But my number one favorite thing to do is to travel to many amazing places and learn about them and their culture. I’m a huge history and art nerd, and I get so excited when I visit historical sites and museums such as El Tajín, Teotihuacán, Museo Nacional de Antropología, and Museo El Tamayo in Mexico, or El Museo de Arte Precolombino Casa del Alabado, a museum dedicated to pre-Columbian history in Quito, Ecuador.

What’s your number one piece of advice for new travelers?
Make the effort to meet locals on your travels. Couchsurfing and Airbnb are my favorite ways to meet locals when I travel. It’s awesome to learn about the culture of a place you visit. But again, I’m a huge art and history nerd and so am incredibly interested in learning about cultures and languages. Even though I’m deaf, I’ve never had any problems communicating, and for some odd reason, even though I’m shy as hell, I’m more outgoing and willing to chat it up with people outside of America.

Become the Next Success Story

One of my favorite parts about this job is hearing people’s travel stories. They inspire me, but more importantly, they also inspire you. I travel a certain way but there are many ways to fund your trips and travel the world. I hope these stories show you that there is more than one way to travel and that it is within your grasp to reach your travel goals. Here are more examples of people who overcame obstacles and made their travel dreams a reality:

How To Pack A Professional Travel First Aid Kit

I get a lot of questions about health care on the road. How can I avoid getting sick? What do you do about vaccines? What happens when I do get sick? Since I’m not a doctor, I don’t like giving medical advice beyond a few general tips so I’ve asked Mike Huxley, a registered nurse and author of the blog Bemused Backpacker to pen a few articles on health and safety on the road. This is the first in a series on the subject.

A first aid kit is an essential piece of equipment on any gap year or backpacking adventure, but most travelers aren’t sure exactly what they need to take with them. So here is an expert guide on how to pack a first aid kit and what to include in it.

I have been traveling the world for almost fifteen years now, and in all that time I have patched up more travelers’ scrapes and sprains than I can remember. Before I was a nurse this generally just involved handing out the occasional plaster (adhesive bandage or Band-Aid for you Americans) and laughing at a travel companion’s misfortune, as guys tend to do to each other, but since qualifying to work as a nurse I have strapped up a sprained ankle or two on jungle treks, dressed countless small cuts and wounds, and even once cleaned and treated a dozen small leech bites on the legs of an unlucky trekker, among other things.

Thankfully pretty much all of the incidents I have dealt with so far have been minor. Even during my times spent volunteering as an expedition medic in the Sahara, the jungles of Kalimantan and Borneo, and many other amazing places, I have been able to deal with most accidents and injuries that have crossed my path.

I have only been able to do all of this, however, because I have always packed my trusty first aid kit. It has evolved and been refined over the years, but I have always carried one. As any experienced traveler or health professional will tell you, things can and occasionally do go wrong on any trip, and taking a well-stocked kit with you is always advised.

What most of this advice is missing, however, is a note of balance. A well-stocked kit is vital, but there is absolutely no need to go overboard. You don’t need to heft a pack around that the average paramedic would be proud of, and you certainly don’t need to carry around the entire stock cupboard of your local pharmacy.

When I first started traveling, I did what most sensible people do and carried a commercially available emergency first aid kit. There is absolutely nothing wrong with these packs at all; in fact they are excellent and in a pinch I would still recommend them to any traveler. However, over the years, with a lot of experience and my nursing qualification behind me, I have refined my own kit to reflect what I will use out on the road and what I know what will make for a much better first aid kit for the average traveler too.

The best first aid kits are simple but varied and will have a variety of dressings and equipment to deal with the absolute basics. More importantly, they can be used with little or no training. So what items should you include? Here are my picks for the essentials.

Plasters (Bandages)
It goes without saying that these are an absolute essential in any first aid kit. The most common form of minor injury is a cut or a graze, so it is always a good idea to carry a handful of plasters in a variety of sizes. If you think you will be doing a lot of trekking on your travels and you aren’t used to that form of exercise, then some blister plasters are a good idea. It isn’t necessary to go overboard and carry so many you could start your own tiny field hospital; just a few of each type will do, as you can always restock when you pass a pharmacy.

Gauze
Gauze is the medical jack-of-all-trades. I never carry a first aid kit without a supply of gauze in it, and I can’t tell you how many times it has come in useful over the years. It can be used to apply pressure to a wound, clean an injury, soak up blood, help stop bleeding, and even form part of a basic dressing for small-to-medium wounds.

A clean wound and a layer of gauze kept down with either tape or a bandage is often enough to allow time for you to go and get it looked at by a professional.

The best type of gauze to carry in a first aid kit is individually wrapped sterile squares. This eliminates the need to cut them to size when you need them quickly and obviously makes it easier to keep the wound clean and sterile.

Crepe bandages (ACE or elastic bandages)
For when you have something a bit bigger than a cut, basic crepe bandages are useful for keeping small dressings clean and in place until you can get some medical attention. Remember, you’re only going to use them in an emergency and hopefully only until you can get some professional medical care, so you don’t need too many of these, just one or two at most.

Surgical tape
Surgical tape is one of those essential emergency items for when you need to apply and secure gauze or a bandage to a wound, although plasters can do the same job if need be.

Small scissors
These come standard in any commercially available first aid kit (although you can buy them separately too) and are obviously useful for trimming gauze or bandages to size. Just be careful if you do carry scissors to ensure that your first aid kit goes in your checked bag when you are in transit or else airline security will take them off you.

Tweezers
Tweezers are another item that often come standard in most first aid kits and can be useful for pulling out splinters, getting out little bits of stone or dirt when cleaning a wound, or any number of other practical uses.

Antiseptic wipes
For some reason this tends to be the one thing most people overlook when thinking of first aid, but antiseptic wipes are an absolute essential in any good pack. No one wants a cut or wound to get infected, and antiseptic wipes are perfect for cleaning it before applying a dressing. Just a small handful will suffice for most packs. Like most basic items, they are easy to replace at any pharmacy when you run low.

Condoms
Apart from the obvious benefits (staying sexually safe), these handy little items can be used as emergency water carriers or even filled with ice as an emergency ice pack. I’ve personally never had any call to use them in that manner, but it is a handy bit of information to keep in mind.

Pain relief medication
A small pack of basic paracetamol (acetaminophen if you are American) or any of the associated brand names is usually sufficient, but ibuprofen or other similar medications are fine too. It doesn’t have to be fancy — basically whatever you normally take for pain relief when you have a headache or minor pain.

Loperamide tablets
Also known under a variety of brand names such as Imodium, this is useful for stopping diarrhea for short periods when you need to catch a bus or train. Remember, these are for those emergency moments only when you are actually in transit, as they do not cure diarrhea and shouldn’t be used when you can rest up for a couple of days. (Normally the best way to treat diarrhea is to let everything pass through your system normally and drink plenty of water to replace lost fluids.) If you use them sparely, properly, and as directed on the pack, loperamide tablets can be useful additions to any travel first aid kit.

Antihistamine cream
It happens to all of us on our travels: we get bitten by some form of insect and end up with a painfully itchy bump or rash. Don’t worry, the absolute majority of the time the bumps and stings aren’t anything to worry about at all, but they are damned annoying! This is why a good antihistamine cream is a useful addition to help control the itching and swelling.

Antibacterial creams
It’s also a good idea to carry antibacterial creams like Neosporin for any cuts and scrapes you get. This will help heal them faster as well as prevent any possible infections.

Obviously this list can be tailored or added to depending on your trip needs (a tropical jungle trek will require different planning than a city break in Europe), and any good first aid kit should also include any specific, individually prescribed medication or antimalarial prophylaxis. For the majority of travelers, however, the items and kit listed above will cover the absolute majority of basic incidents and accidents.

For any injury, illness, bang, or scrape that requires more than the basics and cannot be covered by the kit above, you should seek professional medical attention. Keep the weight and bulk in your pack down, and remember that unless you are extremely far off the beaten track, you should be able to seek out professional assistance to deal with medical emergencies pretty easily if something happens you can’t handle yourself.

So go pack up your own little first aid kit and keep it stashed in your pack for emergencies. Odds are you will probably never use it — and I hope you never need to — but if you have one, at least you can enjoy your travels with peace of mind and be safe in the knowledge that you are prepared.

Important Note: When carrying any generic medication, it is essential that it is kept in its original packaging when you are traveling in case customs officials need to check it. If you have never taken any of the above medications before, check with your physician, nurse, or pharmacist before you do, as you may have a specific medical history, condition, or allergy that general advice cannot cover.

The information provided here is for general travel health advice and information only. It is provided by a qualified nurse, but it is not a replacement for a personal consultation with a travel nurse specialist, your GP, or a doctor specializing in travel medicine who can tailor advice to your individual medical history and needs.

Michael Huxley is a registered nurse from the U.K. and writes about his travels on the blog Bemused Backpacker. There he blogs about backpacking, sustainable travel, and health related issues. It’s an awesome blog!