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.

If you like what you’ve read, feel free to subscribe to this blog. You can also follow me via Facebook, Instagram, LinkedIn, Tumblr, Google+ or Twitter.

Interabled Couples and Families

By: Katherine Itacy, Esq.

Dated: July 8, 2018

As I read journalist Ben Mattlin’s fantastic new book, In Sickness and in Health: Love, Disability, and a Quest to Understand the Perils and Pleasures of Interabled Romance, this past week, it made me think about my own interabled marriage.

Mattlin describes an “interabled couple” as one in which one partner has a disability and the other is able-bodied. And that’s exactly what Yvens and I have become (for better or for worse).

Throughout the book, Mattlin (a quadriplegic Harvard grad who has two biological children and a wife of over twenty-six years) describes his interviews with numerous other interabled couples. The couples include those with physical and/or mental disabilities; those both interabled and interracial; those in which the disability occurred before the relationship, as well as those in which it occurred afterwards; those with and without professional aides; and those with and without children.

A recurring theme throughout the book involved the additional strain/pressures that most of the couples felt from finding a balance between the assistance and care needed from the able-bodied partner, and the sense of independence, privacy and pride of the disabled partner. Several felt as if the struggles endured due to the reliance upon the able-bodied partner strengthened the bond between them, whereas others acknowledged that it created too much of a strain on their relationship and intimacy. It’s hard to feel sexy and wanted if your partner has been spoon-feeding you and changing your colostomy bag. Several said that it’s preferable to have a paid professional handle most of the daily care for the disabled person. Thing is – it’s costly and not something within every disabled person’s budget.

I, like most of the disabled persons described in the book, have progressive, degenerative disorders. While my second spinal surgery in late March should help slow down the progression of my tethered cord syndrome, and most of my diabetic complications have stabilized for the most part (for now), we have no idea what’s in store for me in the coming years. All I know is that there’s likely nowhere to go but downhill.

The more my health deteriorates, the more urgent it will become to decide as to whether Yvens can/will/should become my caregiver, or whether we can afford to hire professional help to assist me. As it is, Yvens is the only one of us working. While we were living together and he came home from work, he was left to perform practically all of the household duties and yard work. When I was too fatigued or in too much pain to get out of bed and cook, he made sure that I ate and checked my blood sugar regularly.

And while he did all of that willingly, without me asking for it and without complaining about it, I (like a few of the disabled persons featured in Mattlin’s book) feel extreme guilt over it all falling on my partner’s able-bodied shoulders. Regardless of how many times Yvens tells me that I have more important things to be concerned about than him carrying the load for the both of us, I can’t help it!

I’ve already lost a lot of my capabilities and sense of independence. And having previously been in a relationship in which I carried about 99% of the load of housework and financial duties (while working about 100+ hours per week), I hate placing that burden on Yvens; I know how it feels!

Mattlin’s book has certainly helped me to accept (as Yvens has repeatedly told me) that he’s helping to ease my burden and lighten my load because he loves me, and is more than willing to do it. It’s not simply out of a sense of duty or pity or feeling trapped, and it’s not building resentment towards me. Every couple has its own struggles, and in ours (as in so many others’ around the country), our major struggle concerns my disabilities. 

What’s been really helpful and reassuring is that Mattlin notes how the disabled person in the relationship also brings his or her own benefits and strengths to the relationship, even if it’s not in the form of monetary gains or manual labor. We, as disabled persons, bring our own sense of emotional support, humor, encouragement, fiscal knowledge, parenting skills, love and friendship to the relationship and to our partners.

I know that it’s going to take me a while to come to terms with the fact that I can still positively contribute to the relationship, even if I’m no longer able to contribute around the house or yard, and despite the fact that I often need help from my husband in order to make it through the day. So while I continue to work through my feelings of guilt and shame and uselessness, my attention keeps redirecting to another issue at hand: children.

Now, my husband has an amazing, joy-filled seven-year old son, Eli, from a previous relationship. Eli lives with his mother in Orlando, while Yvens currently lives and works in Detroit. We try to see Eli at least 3-4 times per year, and in fact, we just spent the Fourth of July holiday week with him. But this was the first time that I saw him post-surgery, and the first time that I traveled by plane after the surgery. In one word, it was rough.

My husband is great about keeping an eye on my pain and energy levels, since I’ll often try to minimize it in order to still spend time with Eli and the rest of Yvens’ family. Unfortunately, even though Yvens made sure that we didn’t travel too much or visit with the family for too long, the pain and exhaustion hit me like a ton of bricks just a few days into the trip. In fact, I fell asleep while visiting with his parents, and even had to stay behind at the hotel towards the end of the trip.

This really killed me in terms of losing out on bonding opportunities and special moments with my stepson. I love playing his imaginary games with him and hearing his infectious giggle.

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So what of Yvens and I having our “own” child? Since my disabilities make it impossible for me to safely bear a child naturally, we understand that we’d have to adopt in order to have a child.

The thing is, my physical limitations now scare me when it comes to raising a child. If I can’t hang with a seven-year old for more than a few days every few months, then how could I share child-rearing responsibilities full-time??

And yet. There are countless interabled couples that raise children (some of whom were conceived naturally; some through surrogacy, and some through adoption), and raise them well and with so much love. In fact, many of the couples in Ben Mattlin’s book have raised children together, including Mattlin and his wife.

Actually, at the end of the book, Mattlin includes a portion of an essay that his eldest daughter (now in her 20s) had to write a few years back for school. This is how she describes her experience being raised by interabled parents:

“The basic realities of having a physically disabled parent have affected who I am in meaningful ways and made me a more thoughtful and independent person.

I started to take responsibility for fulfilling my own needs at a young age. The point at which a child is no longer the one who needs the most help with basic tasks usually comes with the birth of a little sibling. For me, it came as soon as I was able to raise a spoon to my mouth more effectively than my quadriplegic father. This instilled in me the knowledge that often the most pressing need is not my own. It also taught me, however, the importance of asking for help when I need it. My dad has shown me that there is nothing wrong with asking for what you need, and his fight for reasonable accommodations often helps others who need the same things.” [FN1]

My stepson has already learned that his stepmom sleeps a lot, gets tired easily and is often in too much pain to get out of bed. While that makes me really sad that he’s had to learn that at such a young age, maybe he (and any adopted child we may have in the future) will use these experiences with a disabled stepparent to gain a greater sense of independence, as well as a better understanding of how to respect your physical limitations and ask for help when you need it.

Right now, I’m still recovering from my surgery and adjusting to my new quality of life, so adoption would have to wait for a while, anyway. And even if/when we did look into it, there’ll most likely be barriers that we’ll have to face as an interabled couple. As Mattlin notes in his book, despite the fact that the ADA makes discrimination against disabled prospective adoptive parents, it still happens. And when it comes to adopting from a foreign country, disabled persons sometimes face outright bans against adopting a child, with no legal avenue through which to challenge it.

Sadly, there are still a lot of ignorant (and inaccurate) assumptions out there that a disabled person, even if coupled with an able-bodied partner, wouldn’t be able to provide quality, loving, engaged parenting to any child. And maybe I’m contributing to that with my own assumptions; assumptions that I won’t be able to be a “good enough” parent to an adopted child.

Sure, as Yvens and I were recently discussing, no parent is perfect. Every parent makes mistakes along the way; every parent makes decisions regarding the rearing of their children that may not pan out to be the best decision in the long run. And every person seems to have hangups from their childhood days as to one or both parents. But as long as the parent(s) involved give their best efforts, and make decisions from a place of caring and love, that’s all we can ultimately as from them; these imperfect beings.

Maybe I’d make my child feel neglected because my medical needs would overshadow their need for attention. Or maybe their life experiences, their struggles would provide the child with a greater sense of independence and empathy towards others.

I know, without a shadow of any doubt, that I would love and care for any child of mine with all of my heart; just as I have with my stepson, as well as all of my “nieces” and “nephews” out there.

So who knows what’ll happen in the future. There’s a lot of education and acceptance that needs to happen on my part first. But I’m so thankful for Ben Mattlin, his recent book, as well as all of the inspiring interabled couples out there. I want to thank them all for their strength, as well as for their vulnerability in sharing their stories with the world in order for more acceptance and understanding towards these persons. Hopefully, it’ll continue to eradicate some of the stereotypes as to the abilities (or lack thereof) of those with physical and/or mental impairments or limitations. 

Mattlin’s book has certainly opened up my eyes regarding these issues, and has certainly helped me feel less alone in my thoughts and guilt as a disabled person in an interabled relationship. I’m so lucky that I have a partner who helps me fight against those feelings of guilt and inability. I truly help that each differently-abled person in this world has at least one other person in their life that can provide that kind of support; especially in those moments when we disabled persons can’t support ourselves.

If you have any thoughts or insights on Ben Mattlin’s latest book, or on the issue of interabled couples/families, you can let me know by leaving a comment below, or reaching out to me via Facebook, Instagram, LinkedIn, Tumblr, Google+ or Twitter.

’Til next time, my friends!

[FN1] – Ben Mattlin, In Sickness and in Health: Love, Disability, and a Quest to Understand the Perils and Pleasures of Interabled Romance 232 (2018) (emphasis added). 

The Diving Bell and The Butterfly

By: Katherine Itacy, Esq.

Dated: June 3, 2018

Ok, so I have been going around for quite some time, claiming to feel like I am an active mind and spirit trapped inside a diseased body.

I’ve made this claim, knowing full well that I could have it a lot worse: I could actually have become paralyzed; I could have completely lost my mobility and independence. I’ve tried to imagine what it would feel like if I had become paralyzed, and I’ve tried to empathize with others who are.

I’ve tried to adjust to my physical disabilities, and accept the fact that a large part of my identity is now that of “disabled person.”

I’ve struggled a lot with this over the last decade, and even more so over the last two and a half years. As a child and young adult, I always said: “I have diabetes. I’m not ‘a diabetic.’” I refused to let my health dictate who I am, and instead, have tried to identify myself in terms of my accomplishments. For years, my identity was that of a student-athlete; then, a criminal defense attorney and civil rights activist. 

I refused to let my medical conditions dictate how I lived my life. Until they did. They took over my daily life, ended my identity as an active attorney and activist, and sentenced me to limited mobility and a reduced quality of life.

I’ve had to acquiesce to the fact that many days, my illnesses stop me from making plans or accomplishing certain things. Through it all, I’ve tried to keep a healthy perspective regarding my life, and how I continue to be fortunate in a lot of ways.

But I’ve never felt more grateful about my life, and more empathetic and impressed by another disabled person than when I heard the story of Jean-Dominique Baby.

The 44 year-old editor-in-chief of French Elle was going about his life one day, planning a weekend adventure with his 10 year-old son, when he suffered a major stroke.

Nearly three weeks later, Mr. Bauby woke up from a coma and learned that he was a quadriplegic, with the use of one ear and one eyelid. He was suffering from what’s referred to as “locked-in syndrome,” which is when the mind is aware and fully functioning, but the body makes it all but impossible to communicate with the outside world.

Through the assistance of medical professionals, Mr. Bauby was able to communicate by blinking his one useful eyelid. Anyone trying to communicate with the editor would have to read off letters in the alphabet, and watch as Mr. Bauby blinked to indicate which letter he wanted to use. This was done, over and over, letter by letter, until words and sentences were formed.

As impossible as it may seem to even hold a conversation this way, Mr. Bauby blinked approximately 200,000 times over the course of ten months in order to compose his memoir, “The Diving Bell and The Butterfly.” In it, Jean-Dominique Baby describes what it was like for him to actually be an active mind trapped inside his own body, with his mind and imagination being akin to a butterfly, trapped inside a diving bell.

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To the best of my knowledge, the above image is an example of an open-bottomed “wet diving bell” from the 1700s, which was used to transport divers to and from the water’s surface. The divers could sit or stand in the bell, with their heads out of the water, in order to adjust to the difference in outside pressure to their ears. 

According to Wikipedia, a closed diving bell is “a pressure vessel for human occupation” under water. It makes sense that Mr. Bauby would equate his experience to his mind and spirit being trapped inside a pressurized underwater vessel; I’ve often found myself making similar comparisons in my situation.

Jean-Dominique Bauby’s book (and life story) is simply incredible. He writes almost objectively about his condition, with no sense of whining or “woe-is-me” found within the pages.

And as inspiring and heartbreaking as his story is, it becomes even more devastating to learn that just two days after the book’s publication, Mr. Bauby passed away due to complications from pneumonia. 

I know it does little-to-no good to compare your situation with others, because there will always be someone worse off than you, and always someone better off than you. But when you’re indulging in a little self-pity, it does help to read a story like Mr. Bauby’s, if only for a little life perspective. 

How could you possibly wallow after hearing such an inspiring, yet tragic story?! Personally, I find such motivation from stories like Bauby’s. The human spirit is so resilient, even when the human body fails us.

From now on, if I ever find myself immersed in self-pity or anger towards my physical impairments, I will remind myself of Jean-Dominique Bauby, and the mental and spiritual strength he summoned during such unimaginable circumstances. 

Wouldn’t you?

If you have any thoughts or comments regarding Mr. Bauby’s life story or his memoir, “The Diving Bell and The Butterfly,” you can let me know by leaving a comment below, or reaching out to me via Facebook, Instagram, LinkedIn, Tumblr, Google+ or Twitter.

’Til next time, my friends!

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!

Listen to my latest podcast episode, “Being Your Own Health Care Advocate”

Hey there, friends!

I hope you’ll take a listen to the latest podcast episode from “Hammer Time with Nikki and Kate: A Disabled Lawyer and a Personal Trainer Walk into a Podcast.” In it, I talk a lot about the power and influence medical professionals have over our lives; the importance of putting advanced care directives in place, as well as suggestions for how you can ensure that your voice is heard by your doctors.

The podcast is also available for streaming on Google Play and iTunes.

Let me know what you think! And make sure you’re following the podcast!

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Visit the podcast’s website here. You can also follow us via Twitter, Facebook, Google+, YouTube, or Tumblr. We always appreciate feedback!

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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When You Force a Workhorse to Retire, She’s Bound to Get a Bit Jittery in the Stable!

By: Katherine Itacy, Esq.

Dated: January 24, 2018

Both of my parents have demonstrated an obscene work ethic my entire life. And sure, they came right out and told me and my brother to work hard in school and for the things we wanted, but I think that I learned subconsciously to mimic their true workhorse style.

You know how they say: “Work smart, not hard?” Well…that lesson was never taught in our house…. Instead, Mom and Dad just wanted us to take pride in the efforts we put into whatever we did. You give it your 100% best efforts, and you don’t worry about the rest.

I get (or got) this perverse high from working nonstop at full tilt, and it came on quickly in my early teens. As I was getting better at track (and training more and more each passing year), I was also working at Dunkin’ Donuts during weekends and summers. The manager there learned fast that she could use my “Work the hardest you can, even at your own expense” mantra to the store’s advantage. As a young teen, she had me working in the kitchen with the full-time bakers. Later, she had me driving the delivery trucks to their other stores, and opening one of the stores at 5 AM. At the same time, my coworkers learned to let me pick up the slack while they took extra smoke breaks and stole my tips.

You’d think I would’ve learned to ease up the pace a bit, but nope! Not me! It made me proud to come home exhausted from my shift, with my feet aching and my hair and skin smelling like stale coffee grinds and donut grease (despite numerous attempts in the shower to eradicate the smells).

My work ethic only increased after that, to the point where I was running my own law firm, on three different boards of directors, doing pro bono legal work for the RI ACLU and a few select clients, testifying at the RI State House on various criminal justice and civil rights bills, volunteering for a friend’s mayoral campaign, representing a nonprofit on a RI Senate Study Commission and coaching high school track throwers. My obsession with doing my absolute best for all of these clients and entities led me to neglect my diabetes and caused me to have almost forty surgeries and procedures over a four-year timespan.

Even the Deputy Defender at my last job told me (half-jokingly) during my job interview that she’d only come down to the branch office for my interview “to see how tired you are from everything you’ve been doing!”

Looking back on it now, none of it was for fame, accolades or a sense of power. And upon deeper reflection, none of those things were ever praised in my childhood home. The only goal that my parents ever encouraged us to pursue (besides attaining higher education and the pursuit of happiness) was to work hard at whatever we chose to do in life. There were no five-year or ten-year plans in place. We weren’t raised to be doctors or lawyers. They didn’t push us to go to Harvard or Yale. They wanted us to find our own way, and to find our own version of happiness.

Turns out: None of my major life decisions were prefaced with much premeditation.

As contradicting as it sounds, I never plotted out what sport I hoped I’d excel at, or what college I’d work hard to get into, and yet, once I made the decisions, I worked my ass off to give my absolute best to the task at hand. I stumbled upon throwing and had no idea that I’d be good at it. Same with law school! I only considered it after my diabetes precluded me from becoming a federal law enforcement field agent. And the only reason why I decided to run my own firm is because I’d left a few other incompatible associate/partner positions and a friend told me that he’d mentor me through opening my practice.

I have never dreamt of running for public office, obtaining a judgeship or becoming a senior partner at some huge law firm. In fact, I’ve always preferred working behind the scenes. Coming out of law school, I would’ve been perfectly content being a worker bee, doing the grunt work while others received the prestige. I hate politics (personal and professional), and the only thoughts I’d had regarding political positions were that it’d be great to be an adviser and help shape public policy/law without having to do all the hand-holding and deal-making.

I was in my glory in both college and law school, taking up to 20 credits a semester, getting a double major and a minor at Penn State while spending 2-3 school days per week on the road for track meets; doing research for three different law school professors on top of doing internships and writing a 100-page paper on the criminal justice system (when my writing requirement only required that I write 10 pages, if memory serves correct). I didn’t even realize that I was double majoring, or was earning a minor as well. Hell, I was three classes away from a second minor in African and African-American Studies!

It all made me feel useful. It made my life feel purposeful. I felt like I was contributing; like I was soaking up as much knowledge and guidance as I possibly could. Like I was helping as many clients as I could possibly help.

And while I have essentially stumbled upon every accomplishment and accolade I’ve earned since high school, and had no prior plans for any of the educational, professional or activism decisions I’ve made since then, it has somehow all felt like it was meant to be. I can’t imagine what my life would’ve been like, had I not been a hammer thrower or a criminal defense attorney.

And yet.

If all of this was somehow preordained for me to stumble upon, what am I supposed to believe my purpose is now? I feel so confident that I’m supposed to be practicing criminal defense, representing indigent clients, doing pro bono work and advocating for justice and equity for all. I know I had a skill at legal research and writing. Yet now, I can’t even understand or analyze a single legal case. I’m in so much pain these days, I’m mind-numbingly laid up in bed, with every other thought being: “It hurts so bad!!!

Almost a year ago now, I came to the heart-wrenching conclusion that I could no longer perform my job duties, and I immediately notified my employer. Just about one of the most soul-crushing things I’ve ever had to admit to myself or others. This workhorse has been put out to pasture. My heart and my soul (and my ego) want to be able to continue contributing to society. My mind and my body have taken that purpose away from me, and it is still something that I am adjusting to. Why put a purposeful soul into a defective body?

Best believe, if I could work, I would. I’ve been working incessantly since I was fourteen years old. I was able to earn a good living running my own law firm, starting at the age of twenty-five, in the midst of a tough economy and an even tougher area of law to turn a profit. I have no qualms about doing hard, thankless work; I’ve sure done it before. In fact, I’ve done a helluva lot of free work, and been more than happy to do it!

The workhorse in me sure isn’t happy about her crap body forcing her to retire. Quite honestly, being trapped in this body is one of the cruelest punishments I could ever receive. It’s stifling my spirit. I’m trying to stay optimistic that life will guide me to stumble into whatever’s meant for me next, but in the meantime, I need to conserve my energy in order to make it through most days. Time to put that workhorse spirit into adjusting to my new quality of life – goodness knows, finding peace with this reality will be the hardest work I’ll have done yet!

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