Traveling While Disabled (TWD)

My husband and I love to travel. In fact, one of the very first things that attracted me to him was what he featured on his online profile. On it, he explained that he loved to experience and better appreciate different cultures. Being Haitian and moving to the United States at fifteen years old, he was hungry to understand how others live, and to witness all of the beauty that the world had to offer. While I’m certainly not from Haiti, I, too, share that yearning to appreciate how others live; to witness the wonders of the world!

Once we started dating, we traveled everywhere! We did road trips from Southwest Texas to Orlando, Florida; from Del Rio, Texas, to Las Vegas, Nevada. Over the last four years, we’ve spent time together in Austin, San Antonio, and Dallas, Texas; in Orlando, Saint Augustine, Delray Beach, Boca Raton, Miami, and Key West, Florida; we time at the Grand Canyon, the Hoover Dam, Salem, Massachusetts, New Orleans and Baton Rogue, Louisana, New York and Boston (among other destinations).

Then that damn tumor regrew, and with that, everything changed. We were actually in the middle of a reggae cruise to Jamaica when the first symptoms hit in December of 2015. I doubled over in pain while we watched a famed reggae singer perform, and Yvens helped me make my way back to our room.

In the three years since, my ability to travel without severe repercussions has plummeted.

Last year, Yvens and I spent the week in Florida in order to spend Christmas with my stepson, Eli, as well as the rest of Yvens’ family. Unfortunately, by the end of it, I had to be wheeled through the Orlando International Airport in order to make it to my gate. That week, I’d also had to miss spending time with the family so that I could rest up back at the hotel (and once, on his parents’ couch). Sadly, Eli knows (at seven years old) that his stepmom gets tired easily and can’t really walk or do much for too long.

Worse still, once I got home from that trip, I had a severe bout of some sort of virus or infection that I’d managed to pick up from someone in the general traveling public. It laid me up for well over a week.

The chronic fatigue and immense pain certainly was putting a damper on our travel plans.

Then the amazing Dr. Petra Klinge of Rhode Island Hospital figured out that that evil tumor remnant had grown a tail, and a glimmer of hope started to spark. Maybe I could get some of my mobility back, or at least some relief from the constant pain and fatigue!

Alas, none of that happened. Yes, Dr. Klinge did an excellent job on the neurosurgery this past March. She managed to remove almost all of the tumor (save for the part that had managed to grow through my spinal cord). But my neurological deficits remain the same, and they are prone to get worse over time.

So what to do? I mean, it’s hard enough to travel with diabetes. Tack on the neurological disorder, and we’re in business!

So when my mom surprised me with a birthday cruise from Bali, Indonesia, to Sydney, Australia, a mix of absolute joy and absurd fear came over me. How could I manage all of the traveling and excursions with my current physical state?? As it was, Yvens and I had decided to cut back on even short trips that could lay me up for weeks to follow. How in the world was I going to manage a cruise on the other side of the world???!?

Imagine trying to keep your insulin refrigerated on a fifteen hour flight from Boston to Hong Kong! Never mind a four hour layover, and then another five hours on the flight to Bali. Thanks to the good people at Burger King, I was able to get a shit ton of ice to keep the cool packs a bit cool during the flights. That being said, it was absolute torture on my back, legs, and feet, even with the assistance of a back brace and an inflatable donut to sit on.

Well, I’m more than halfway through the cruise at this point, and while I can’t say that it’s been easy, it sure has been memorable! I’ve decided that while I may have to take my diseases and degenerative disorders lying down (small pun intended), and be in debilitating pain regardless of whatever I do, I’m still going to make some beautiful memories along the way!

Thankfully, the cruise we’re on is through Viking Cruises, which tailors its travels towards the elderly and infirm population. There are no children allowed as guests, and the atmosphere is very calming and serene. There’s lots of classical music and art aboard, as well as a book exchange throughout the common areas of the ship.

Take a walk to the main dining hall, and you’ll see a wide variety of canes, walkers, motorized scooters, and back braces (almost all of which are already in my artillery). Speak with almost any of the other guests, and you’ll find that a large number of them have had at least a few surgeries and/or grave diagnoses in their recent past.

Amidst ‘my people,’ I feel a little less guilty about my need to modify the cruise experience. I’ve already missed some of the excursions due to exhaustion, needed my cane more than I care to admit, and needed the availability of a yoga mat or two to do some deep stretches after the back pain became much too unbearable. It’s actually been nice to commiserate with the similarly disabled guests! They understand what it’s like to try and mask your pain; to feel weak or that you’re putting someone out if you ask for assistance.

Hell, I almost feel like a burden to our cabin steward, who is eager to clean our room at least twice a day. I feel like telling him: “I promise, you’re doing an amazing job, and more than most, I understand completely what it’s like to expect perfection from yourself in everything that you do. That being said, there’s no way in hell I can leave my bed today, so you’re just going to have to respect the “Do No Disturb” sign on the door for what it is, and try again tomorrow!” But alas…

So I might not be the easiest guest on the ship…I definitely appreciate the experience more than most! While most of the other guests are busy enjoying their retirement years, I’m just trying to suck as much out of life and this world as I can while I’m physically able to enjoy and experience it!

And therein lies the beauty and the curse of being disabled–you are well aware of the brevity of life, for better and for worse. While there’s a lot of anger, resentment, and fear mixed in there with appreciation, perspective, and awareness, I do feel fortunate that I’m making these memories now, while I still can.

I certainly have to pay for them later/during, but to me, it’s worth the extra physical pain and exhaustion in order to feel like I’ve really lived.

Traveling while disabled (TWD) certainly sucks. Trying to find room for my cane in the overhead compartment; trying to keep the ice in my bag from leaking onto the floor of the aircraft; having to stand up and stretch in front of other passengers at very frequent intervals; trying not to cry from the excruciating pain; looking crude and rude as I try and lie down on two-to-three seats at the gate that are without armrests so that I can give my back and legs some much-needed relief. It’s all rather humiliating and attention-causing, but you have to learn to live with it if you’re going to make it through the travel experience.

You just have to prepare. You have to be ready for TSA and Customs to question the amount of pills in your possession, as well as your insulin pump, cartridges of insulin, and pump supplies.

You get ready for the pat-downs and sequestration to separate areas of the airport. For certain countries, letters from your doctor(s) are needed, in which they explain how you’re disabled and just what you need for safe travels.

You have to be ready to hold the security line up as you remove your back brace, place your cane into the scanner, and explain that the device in your pocket is just an insulin pump. Get ready for TSA to ask you to rub the pump with both hands, then have them take samples from both of your hands to ensure that there are no explosive substances on the device or your hands. Be prepared for another agent to withhold your carry-ons from you in order to figure out what the hell those insulin vials and cool-packs really are.

TWD is tricky business. It’s certainly not for the faint of heart or the timid of spirit. You need to be okay with strongly requesting/demanding that each hotel room/ship cabin has, at the very least, a mini-fridge. Ideally, you want to request a fridge-freezer combination so that you can freeze your cool packs for the return trip while you refrigerate your insulin.

For pump users, you have to be prepared that if you swim in the enticing waters, you’re going to get your infusion sets waterlogged. If you don’t have extra to replace them, you’re going to be in trouble!

TWD sure ain’t easy, but I am oh, so thankful to be living in modern times. Besides the fact that I’d be long dead from the diabeetus and all its evil attacks on my various body parts, there are now so many different medical aids and inventions that make TWD a bit less painful on your body.

As an example, I met a woman on the cruise while we were docked somewhere on the Great Barrier Reef. She had a motorized scooter/wheelchair that she bought in order to travel, since she faces pretty severe rheumatoid arthritis. With just the touch of a button on her remote, the device folds into itself until it’s the size of a piece of carry-on luggage! Ingenius! Like one of those fancy prams you see all of the inexplicably rich couples in almost every movie nowadays! Anyway, I’ll certainly be looking into that scooter if I want to continue TWD, as I’m sure the need for it is in my very near future.

In the end, TWD is all about managing your expectations and perspectives. If you’re TWD, get ready for more than a few hiccups. As long as you’re ready for them, they’re not so bothersome. And do your best to see through the pain and limitations. Try, instead, to focus on the amazing sights, smells, tastes, and sounds that come with visiting somewhere new.

Appreciate that even while TWD, you’re able to experience the amazing grace that this world exhibits. Be thankful for advances in medicine and medical devices. Hell, using the insulin pump is unquestionably easier than carrying a cooler with insulin, as well as a bunch of sterile syringes in order to go anywhere!

I’m thankful to be able to TWD. Sure, it’s not what Yvens nor I envisioned for our lives. We’re almost certainly not going to be able to reach all of our desired destinations. But if you’re disabled and still able to travel, I encourage you to do so! You’ll make memories that will carry you through the painful days. It’s more than worth it to boost your spirit!

My love and best to each and every one of you!

Safe travels, and Happy Holidays!

–Kate

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To read more about my journey adjusting to and accepting my disabilities, keep an eye out for my upcoming memoir, From National Champion To Physically Disabled Activist: My Lifelong Struggles With A Diseased Body, And The Lessons It Has Taught Me Along The Way.

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