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!

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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).

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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.

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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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Could We Teach Empathy Through VR?

By: Katherine Itacy, Esq.

Dated: May 30, 2018

Hi, everyone! I’m back from my surgery, and thankfully, I still have a few of my wits about me!

While the recovery process is still ongoing, and the original pain has returned, I am so thankful that the neurosurgeon was able to remove most of the tumor and untether my spinal cord. Even if none of my other neurological deficits are alleviated, and the pain remains the same as before the surgery, at least the doctor and her team were able to prevent paralysis!

Lately, I’ve been thinking about those of us with chronic pain. It’s so hard to describe sometimes, and can be so wildly subjective to the individual. On a scale of 1 to 10, is my 7 a ‘real’ 7? Or is it someone else’s 10? Maybe someone’s 10 is another person’s 4. No one really knows, because you we’ve never been able to objectively quantify someone’s pain. But what if we could?

My husband has often told me that he would take the pain away from me and feel it himself if only I could be spared from it. In fact, he’s said he’d take away all of my medical conditions from me if he could. Obviously, it’s an incredibly sweet sentiment, but I’d never want him or anyone else to have my disabilities.

But that got me thinking…. 

The hubby and I also talk a lot about the criminal justice system, as well as the discrimination that persons of color frequently face in America. He’s obviously coming from the viewpoint of law enforcement, but also as a person of color and a legal immigrant into this country. I, of course, have my limited insights as a former criminal defense attorney and civil rights activist, as well as my experiences as the wife of a Haitian male and the step-mother of a Haitian-American male.

We talk about how frustrating it is when individuals offer opinions about the experiences of persons of color in the United States, when those individuals don’t even try to consider what it might be like for a black man or a Latina female, for instance. Being able to understand what another person is experiencing or feeling is the definition of empathy. Often, it’s impossible to fully understand, but we, as people, need to at least try. Otherwise, there’d be no compassion for our fellow human being.

So what if it were possible to put yourself in someone else’s shoes for a short time?

And no, I’m not talking about the plot of Freaky Friday. I’m talking about virtual reality.

With all those new VR goggles boasting lifelike experiences, I asked the hubby this past weekend: What if someone created a “Day in the Life” VR game to foster greater empathy towards others??

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Maybe the user could experience what it’s like for the average black man to be pulled over several times in one day, just because he “fits the description” of a wanted suspect?

What if you could experience what it’s like to be in solitary confinement in prison, or on death row? How about being a day laborer in Southern California during the summertime? Or an undocumented person, traveling through the desert brush with a Coyote smuggler and a group of others trying to illegally enter the country?

How about experiencing, through VR, what it’s like for a police officer to canvass a dangerous neighborhood for an armed robber? Or a soldier on patrol?

What about trying, through VR, to make it through the day as a homeless teen on the streets of New York City? Or being a person in a wheelchair, trying to navigate yourself around a busy college campus? Or a single parent, working two jobs and trying to raise your children alone?

Now, I’m not suggesting that we create a VR game that would create pain or trauma for the user. But wouldn’t we, as a society, get along with each other better if we could better understand the struggles that so many of us endure in our lives? Don’t you think that Congress would benefit from a little more empathy before it proposed and voted on various laws?? That the average person might be a little less judgmental or self-absorbed if they better understood what others go through?

Of course, it’d be very unlikely that people with limited empathy would even want to try the VR game, but wouldn’t it be awesome if they did?

Who knows – maybe future generations could be required to play the game during high school, sort of like having to carry around a robotic baby for a few days to understand what it’d be like to be a teenage parent!

What do you think?? Could a game like this be helpful? Do you think it’d work? That the people with limited empathy would take such a game seriously? If so, what other experiences do you think it would help the user to be exposed to?

I’d love to know what you think!

You can let me know by leaving a comment below, or reaching out to me via Facebook, Instagram, LinkedIn, Tumblr, Google+ or Twitter.

Maybe I’ll even make it the subject of a future podcast episode! You can learn more about the podcast I co-host with my BFF Nikki by visiting the website here. You can also follow us via Twitter, Facebook, Google+, YouTube, or Tumblr. We always appreciate feedback!

‘Til next time!

My So-Called Interracial-/Intercultural-Married Life

By: Katherine Itacy, Esq.

Dated: January 1, 2018

On this January 1, I came to find myself serving the Haitian Independence Day soup (known as “soup joumou”) to my Italian-/French-/Scottish-/Irish-American family. You see, this New Year’s, I am staying at my parents’ home in Rhode Island while my husband attends a law enforcement academy in Georgia. For these past three New Year’s, I have made my greatest attempts to come as close to the delicious Haitian soup as possible (knowing full well that it tastes nowhere near close to the real thing!). But for the first two years, it was prepared just for myself and my husband while we lived in Southwest Texas.

While making soup joumou is still a new tradition for me, it was very important for me to continue this tradition in Rhode Island, and to share it with my immediate family. It is my belief that when you partner with or marry another person, you should immerse yourself in their culture and traditions, and should be open to sharing your cultures and traditions with them. Having a greater understanding and appreciation for those things means that you have a deeper understanding and appreciation for who your partner is.

Now, I’m certainly not trying to say I’m an expert in Haitian culture, but I do love to learn more about it! In fact, after learning the story behind why Haitians eat soup joumou every January 1 (their Independence Day), I have to say – it’s one of the most badass traditions I’ve ever heard of! To commemorate the first successful slave rebellion by eating the soup that the slaves used to have to serve to their slave-masters?? I can’t think of a more befitting way to celebrate the independence of the Haitian people, and to keep that rebellious and resilient spirit alive!

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Preparing to make the soup joumou takes about two-to-three days, and the actual cooking process takes about two-to-three hours. During this time, I reflected upon the last year, considered what’s in store for me in the coming year, and thought about the audacity of me trying to expose my family to some Haitian culture. Who am I to share this story or this tradition?

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Yes, I am the wife of a Haitian man, and the stepmother to a Haitian-American child; but where do I get off trying to educate others about a culture that is not my own? These questions made me reflect upon the last (almost) three years, and what it has meant to be in an interracial-/intercultural-relationship. My husband and I could not have lived more different lives growing up, and for many things, have such different views and opinions from one another.

That being said, most of our relationship comes really easy to the two of us. We fell in love with one another, and decided to get married. To us, it really didn’t matter that we are of different races. Yes, a white woman married to a black man in America makes certain things more difficult for us. I have gotten used to the occasional black woman giving me the side eye because I am in a relationship with a black man.

Sadly, two of my all-time favorite artists (both of whom are strong, independent black women) have publicly stated their disapproval of black men marrying white women in America. I understand their viewpoint that as black women, who have traditionally toiled and endured in order to support and care for the black men in their lives, feel betrayed and disrespected when their men choose to build lives with women outside of their race. But both my husband and I are of the belief that if you fall in love, the color of your partner’s skin should not stop you from being together. Thankfully, we live in a post-Loving v. Virginia America; but Americans sadly aren’t universally accepting of relationships such as ours.

Sure, interracial-/intercultural-dating or marriage requires some additional education, empathy and understanding than the traditional relationship. And no matter how much I immerse myself in my husband’s culture, I will never fully understand what it was like for him in Haiti; nor will I ever fully understand what it is like for a black man in America (no matter how many African/African-American Studies classes I took in college, or how many Ta-Nehisi Coates or Michelle Alexander books I have since read). Not to mention, you are almost guaranteed to encounter a few ignorant assholes along the way who are anything but fans of your relationship. But if you’re willing to open yourself up to learning more about a segment of the population that you know little-to-nothing about, the relationship can have the extra benefit of making you a more empathetic, culturally-educated person. Talk about a win-win!

So, as my family and I enjoy my version of the soup joumou, I consider myself lucky to have met a man who is so willing to educate me about his traditions and experiences on this earth. Not only is the soup delicious, but it allows me to celebrate who my husband is and where he comes from. Quite a way to start off the new year, don’t you think?

Happy New Year to all of you, my dear friends and readers. I hope to finish writing my book and submit it to publishers by the end of this year. I hope that each of your resolutions come true, and that you all have a safe, happy and healthy new year!