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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Life Unfinished

By: Katherine Itacy, Esq.

Dated: March 20, 2018

At this time, one week from now, I should be lying completely flat in my hospital bed, starting to recover from my second tethered cord release/laminectomy/complex lipoma removal neurosurgery. That’s if all goes well.

This surgery comes exactly thirty years (down to the month) after my initial neurosurgery. And with each passing day, I am more and more grateful that I remember very little from the initial surgery. Thank heavens for a four-year old’s limited memory retention!

In my continued pursuit of full disclosure and an authentic voice, I thought you should know: I’m scared shitless.

As most of you already know, I’m a bit of a surgery veteran at this point in my life. I’ve undergone well over forty different surgeries and procedures so far, and the majority of those occurred within the last decade. I’m not new to anesthesia or to operating rooms. I’m also relatively accustomed to high levels of pain.

I’m not scared of needles or IVs (I mean, come on: I’m a thirty-year Type I Diabetic!), I have no problem being in a hospital and I have complete confidence in my neurosurgeon.

But I’m scared shitless.

I just have this strong sense that I may not wake up from the procedure; at least, not in the same state of mind and soul. And I’m almost creepily calm about the possibility. I have all of my advanced care directives in place, ready for the hospital staff to receive and review. My family and close friends know what I would like to have happen if I pass (donations in lieu of flowers; body donated to Brown Medical School for cadaver study, followed by cremation and destruction of the remains; a fun, upbeat party instead of any sort of funeral or wake, etc.). And because I am very open and direct with others about how much I care about/love/appreciate them, it’s not really so much about not having closure with my loved ones, should I expire.

I’m a pretty practical and prepared person (how’s that for alliteration?!), so I have a lot of the paperwork and legal contingencies already in place. The statistical probability/possibility of my untimely death is totally understandable to me.

In all honesty, what’s bothering me the most is that I haven’t finished my life’s purpose yet.

My social/civic activism and criminal defense career (both of which I saw as my collective calling in life) were shut down so quickly, so dramatically and so completely since my spinal cord started re-tethering over two years ago. I’ve been working so hard to make peace with that reality, and with the fact that I may never use my legal mind ever again. But through this process, I felt the strong pull towards writing a memoir about my life’s success and struggles, particularly dealing with a diseased body. I’ve now written 210 pages of that memoir, and have begun to start the editing and peer-review process. Sadly, there’s no way it’s going to be finished within the next week, and that really frightens me.

What if I poured my heart and soul into this project, only to leave it unfinished and unread because my body finally got the best of me?

Thankfully, I have a wonderful and talented friend who has agreed to take over the project and submit it for publication if I pass or become incapacitated, and that’s a huge relief. The thing is, in the end, it still wouldn’t be one hundred percent my voice and my vision.

I’m not so self-absorbed that I think I’m the only person who’s ever felt the need to pass on their little gems of wisdom or insight into life’s fragility and unfairness. It’s just that I would never be okay with leaving this world without doing more for its betterment. I haven’t done enough. Frankly, I’ll have never done enough, but come on – ten years of activism and indigent defense cannot be my entire legacy.

If only I believed in an afterlife, my ghost would be stuck in limbo, in perpetuity, for all of my unfinished work.

Alas, I don’t, so you’re all probably safe from seeing my spirit hanging around.

And hopefully, my fears over next week’s surgery will all be for naught in the end.

But just in case, please know that I’ll be leaving this world (or my conscious mind) with these wishes and intentions:

For every single person to find warmth, comfort, love and passion; for everyone to live in good health, with pure hearts and compassionate souls, living to make their lives and the lives of those around them better; for everyone’s life to count for something substantial, and for each person’s life to have less pain, no hunger, a sense of peace and a clear and positive place in this world.

Each one of you matters, and each one of you deserves better. The world deserves better. Be better.

All my love,

Kate

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The Importance of Finding People Who “Get It”

By: Katherine Itacy, Esq.

Dated: March 4, 2018

It’s been a long, long journey since I started feeling the symptoms of my spinal disorder in December of 2015. Since then, I’ve retired from my job (today, actually), gone through a number of painful medical procedures and nauseating pain meds, lost a good deal of mobility and had to adjust to a new “quality” of life. It’s made me feel sad, defeated, depressed and downright incensed.

I’m not a person who easily asks for help or admits defeat. I’m not someone who gives up easily or just accepts her circumstances. I fight. I persevere. I persist.

I made it through neurosurgery at the age of four and relearning how to walk. I’ve made it through thirty years of Type I brittle diabetes. I’ve made it through an eating disorder I created from withholding insulin from myself. I made it through a toxic first marriage and an even more toxic divorce. I’ve made it through dozens of surgeries, all of which occurred while running a successful law practice.

But over the last decade or so, I’ve had to start accepting my physical limitations and the consequences that stem from mistreating my mind, body and soul. My idea of what I’m capable of enduring and achieving in this life has changed; it had to. And that royally pisses me off.

While we were still living in Del Rio, Texas, I realized just how angry I was; not so much at any of the doctors that had demonstrated such horrific bedside manner; not at my poor husband, who was simply trying to keep positive and believe that we would find something, anything, that would help alleviate some of my daily pain.

I was angry at myself, at my shit body. Was it not enough that my diabetes was already waging war against my nerves, my hands, my eyes and my breasts? Was it not enough that I face a huge risk of going blind, having a heart attack, suffering from kidney failure and/or having a limb amputated in the future? Was it not enough that I’d been born with Spina Bifida Occulta and a huge lipoma across my entire back? And that the damn lipoma had wrapped around my spinal cord at the age of four and started pulling on it so tightly that the cord was ready to snap? Now, 28 years after having 90% of the lipoma removed, there was something else happening with my spine?

I now had to wake up each day (and in the middle of many nights) in debilitating pain? Be unable to sit, stand or walk for any ‘normal’ period of time? Endure persistent (inexplicable) muscle spasms all over my body? Pain shooting down my sacral area (i.e., ass), legs and feet? Be so tired that I sleep for 21 out of 24 hours or 30 out of 36 hours, leaving me to question whether I’d fallen into a warped version of a Disney movie and in need of a prince to come kiss me awake? Be unable to use my legal mind, which I’d spent years crafting and refining; which enabled me to perform (what I thought was) my calling in life?

I’m lucky. I have wonderfully supportive family and friends. But not a one could fully understand what I was going through; not a one could seem to counsel me through the rage I was feeling towards my own vessel in life.

I’d only tried counseling once before, and that was when I came to the realization that I needed to get a divorce. That thirteen-year relationship had shattered the person I once was, and I needed help putting her back together. It took a while, but it worked, and I finished counseling stronger than ever before.

But as I sought explanations and treatment for my plethora of symptoms from this (then-) unknown spinal disorder, I realized that I needed help once more. And maybe, more than anything, I needed to find a group of people who could really understand my feelings. I vowed to myself and my husband that as soon as we made it to Detroit (our next destination), I would try to find a support group to join.

My plan had to be adjusted after it became clear that we wouldn’t get to Detroit for a while. There were delays in the application process; then a natural disaster and a government shutdown delayed my husband’s training academy. I came back to Rhode Island last June to stay with my parents while Yvens finished up this job change and training. I’m so thankful that I’ve been able to receive outstanding medical care here while I wait.

But the anger resurged. So my primary care physician referred me to a counselor who focused on helping patients adjust to their disabilities. It’s been so constructive to let some of the steam out of the pot, and it’s been really helpful to have my feelings be validated by someone who hears even more tragic and dire stories than mine on a regular basis.

Still, my counselor supported me finding a support group so that I could share my story and hear similar stories from others in comparable conditions.

As I was searching for a chronic pain support group in Rhode Island, I got news that I’d been misdiagnosed for the last 2+ years. What was actually happening to me was a recurrence of my spinal cord being pulled. Yup, I have tethered spinal cord (“TC”) again. Twenty-eight years after it first tethered.

My dad figured I was one of the rarest medical patients to ever live. He always thought my getting TC to begin with was such an uncommon thing. But my new (and totally awesome!) neurosurgeon assured me that I was not alone in having TC once again. In fact, she’d recently released a tethered cord for a patient who went forty years in between his first and second TC!!

The day after I received my recurring TC diagnosis, I took a shot in the dark and tried to see whether a “tethered cord” support group existed on the World Wide Web. Guess what: I does! On Facebook! So I joined the group and took another shot in the dark; I asked its members whether anyone else had recurring TC. Take another guess: several had! And while some of their stories were a bit bleak (e.g., one woman has had FOUR TC release surgeries in the last fifteen years, and anticipates needing more in the future!!!!), just knowing that there were others like me out there was so sadly comforting.

Of course, I hated that anyone had to endure a tethered cord. It can paralyze you, and often messes with your bowel and bladder functioning (as it has with mine), on top of many other things. And up until a few weeks ago, I didn’t even know that what I had was recurring TC. But it’s been so helpful to be part of a community (albeit, an online community, which, up until this point, I hadn’t been the biggest fan of or participant in) where people just get it.

I’d forgotten just how important it is to find and surround yourself with people who get it; who get you. And it doesn’t have to be all of you; I’m not sure I could ever find anyone (other than myself) who has experienced and felt every single thing I’ve experienced and felt. But in times of stress or pain or loneliness or anger or sadness, it’s essential that you be able to confide in, vent to or simply be with another person who understands; who will know just what to say and what not to say; who can tell you, with authority, what has at least worked for them in the past when they felt the way you’re feeling. It can make all the difference in the world.

And I’d encourage you to be that person for someone else when they need help. Remember how helpful friends, family and even near strangers have been to you in the past when you needed a helping hand or a listening ear.

It’s like this past week, when a good friend called to thank me and my BFF Nikki for our most recent podcast episode, where Nikki and I had discussed self-care and self-love. My friend called to say that she had recently ended a toxic relationship, and had really identified with our mention of ending toxic relationships in your life as part of your own self-care and self-love.

Simply hearing that our podcast struck a cord with another person made me feel incredible! Did I discover the cure for cancer? Nope. But maybe I’d reaffirmed for my friend the validity of her decision to end the relationship. Who knows? Maybe it’ll encourage another listener to do the same with an unhealthy relationship in his or her life. Not that I’m out here trying to break people up; it’s just that Nikki and I wanted to share our discussions and our experiences with others in order to make people’s lives better. We wanted to connect with people, and let listeners know that they’re not alone. We want them to know we get it.

Knowing we’ve done that for even one person out there is pretty indescribable. It’s one of the best and most basic parts of being human; it’s the shared human experience.

Be that for others, and know there are others that will be that for you. Not a single one of us is completely alone.

Get it? 😉

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