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.

Happy Ten Year Anniversary, Rhode Island Bar License!

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Wow, look at that baby-faced newbie attorney!! Today marks ten years of being a member of the Rhode Island State Bar, and I have to say, it makes me pretty nostalgic!

I can’t believe how much has changed over the last few years, and I’m heartbroken to think that I’ll probably never practice law again.

That being said, I’m still so immensely proud of my journey, and I’m so thankful that I got to be part of the criminal defense and civil rights communities, even if it was just for a short while. My heart will always be with both of these causes.

In my first five years of being a Rhode Island attorney, I was able to own, operate and grow a corporation; argue several cases before the Rhode Island Supreme Court; testify numerous times before the Rhode Island Legislature; serve on a Rhode Island Senate Study Commission; be a board member of the ACLU of Rhode Island, the Rhode Island Association for Criminal Defense Lawyers (RIACDL), and the National ACLU Board; be selected for five straight years as a “Rising Star” in Rhode Island criminal defense and appeals; and, most importantly, help (or at least try to help) probably hundreds of people in desperate need of legal assistance.

I can’t begin to count the number of hours I put into my legal career, but I know for certain that it’s paid off immeasurably. The legal profession (and more specifically, criminal defense) gave me LIFE, and I’m so proud of my colleagues and mentors for the unending power and courage they continue to display in their fight towards justice and equality! I’ll always be with you on the frontlines in spirit!

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To read more about my journey into and through the legal profession, 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.

Listen to the Extended Version of Episode 2, Female Business Owners, with special guest, Angie, of Angelina Rose Photography! — Hear Me Roar – Podcast with Kate Itacy

It’s here, folks! Click below to start listening to the extended, extra-special mega episode of the “Hear Me Roar” podcast, “Female Business Owners: The Benefits, Pitfalls and Struggles Women Face When Running Their Own Business”! The episode features the podcast’s very first guest, Angie Bonin, of Angelina Rose Photography! Kate had an amazing time chatting with Angie about […]

via Listen to the Extended Version of Episode 2, Female Business Owners, with special guest, Angie, of Angelina Rose Photography! — Hear Me Roar – Podcast with Kate Itacy

Spring Cleaning Your Relationships

By: Katherine Itacy, Esq.

Dated: July 22, 2018

Okay, so it’s a little late in the year to be referencing “spring cleaning,” but hear me out.

Ever taken a look at your closet and realized that you’re probably never going to fit into those old jeans from your “skinny”/“skinnier” days? That the shirt that looked amazing on you in the store’s dressing room has never looked quite flattering enough on you when you’ve tried it on at home? How about taking a good look at your favorite jacket and realizing that it’s just too worn out to be worn out in public ever again? 

No?

What about noticing the dust that’s gathered on that fitness equipment in the garage or basement? You know, the one you saw on that really intriguing infomercial, but have never managed to actually use more than once or twice since you’ve had it in your home?

Unless you’ve been featured on an episode of Hoarders, then you’ve most likely had the urge to purge. Who doesn’t feel better once they’ve gotten rid of things from their life that are no longer of any use to them? Even of things that were once a part of their daily lives, but are now sitting on the proverbial or actual shelf, collecting dust?

Personally, I know that I always feel better once I’ve done some spring cleaning in my life. Whenever my personal space starts to feel a bit cluttered, or my closet gets a bit too full to make room for another hanger or two (I know – First World problems, right?!), it always makes me feel a bit claustrophobic. But once I’ve scoured through my belongings and gotten rid of things that I no longer use, wear or enjoy having in my home, it always makes me feel tidier, more relaxed and even excited about welcoming new things into my home in the future.

I’ve recently realized that this spring cleaning/pruning concept can, is, and must also regularly be applied in terms of outdated, transformed and/or unflattering personal relationships in one’s life.

If I’ve learned anything from reflecting upon my life choices, relationship choices and deteriorating health while writing my book, it’s that life’s far too short and too meaningful to waste any precious time or energy on draining, unhealthy or lopsided relationships. You know the ones I’m talking about — the ones in which you spend countless hours listening to their drama, but can never get them on the phone when you need a listening ear; the ones in which it’s all about what you can give to them, knowing that you’ll never be able to expect or hope for the same in return; the ones in which you make all the effort trying to maintain the relationship, invite them to places, see how they’re doing, et cetera, until it starts to feel like you’re a thirsty and desperate unrequited love interest who’s being ghosted.

I’ve had to come to terms with the fact that in my current state of health, I have only a limited amount of energy on any given day to expend on a wide variety of things: doctors’ appointments, physical therapy, editing my book, maintaining my personal relationships, et cetera. On any given day, if I choose to overextend myself, I know that I’ll have to pay for it over the next several days, usually with a helluva lot of pain and a lot of time passed out in bed.

So in terms of what I’m willing to spend this finite amount of time and energy on, unhealthy, outdated and/or unnecessarily dramatic or draining relationships don’t even make the cut anymore. The physical consequences I endure from the emotional toll that these relationships take on me just isn’t worth it anymore; no matter how much of a people-pleaser/pushover I’ve come to realize that I am.

Nope. I have no intention of spending whatever time I have left on this earth involved in toxic or unhealthy relationships, and as hard as it’s been for me, I’ve spent the last five-to-ten years trying to weed out a sadly large number of fake and/or manipulative and/or mean-spirited people from my world, and to cultivate the loving, meaningful, fulfilling relationships I have with my true “family” and friends. I use “family” in quotations because I am of the firm belief that as an adult, you can and should cultivate your own family; not just from those with whom you share blood or genetics or marital connections, but from those who are supportive, loving, and really know you.

In my humble opinion, as soon as we’re emotionally ready, I think we all need to take time (on at least a semi-regular basis) to reflect upon the relationships in our lives. Are they healthy? Are they respectful? Are they loving? Are they meaningful? Or are they one-sided, manipulative, abusive, disrespectful, hurtful or even inconsistent? 

Take some time to think about your personal boundaries. Do you stand up for yourself? For those that you love? 

Are you doing your best to meaningfully contribute to the relationships that you do value and want to keep?

Do you respect and love yourself as much as you respect and love your family and friends? 

We all need to ask ourselves these questions on a semi-regular basis, just as we semi-regularly “spring clean” our belongings. 

If you consider the time that you spend on any given relationship in a given week, month or year, you might realize that a friendship has managed to go dormant. Now, that could be for a number of reasons: it could be that that person has found a new group of friends that they have more in common with; it could be that they no longer value your friendship as highly as they once used to; it could be that you’ve both gotten so busy at work, with your significant others or with family members that it’s just been a while.

Relationships can and will change. People change; their priorities and values change. Those who used to put the time in to contribute to your relationship may no longer do so. 

But there’s no need to vilify someone just because they’re no longer in your life as often as before, or in the same capacity as before. I think we can all agree that one’s priorities can change a lot after marriage, divorce, children and/or burgeoning careers. Some people may need to take some time for themselves, to get themselves together or even focus on the more urgent needs of others in their own lives. Give them the space they need, and you may be able to reestablish your relationship with them later on in life.

The thing is, same as there are different reasons for getting rid of personal items in your home, there are a multitude of reasons for severing ties with people from your life.

And if you end these relationships after meaningful reflection, honest introspection and the best of intentions, then I think that you’ll find that your life is just a little bit tidier; that it’s at least a little less stressful or drama-filled, and that you may even become excited at the prospect of welcoming new relationships into your life in the future.

As long as we approach each relationship with honest intentions, an open heart and a forgiving spirit, it’s probably best to let go of the relationships that fail or fade away or are no longer having a positive impact upon our lives.

Focus on loving, respecting and appreciating the wonderful people in your life. You’ll be too busy maintaining and enjoying these relationships to spend much time worrying about why the others have ended. I can’t promise that it’ll be easy, but I can safely say it’ll be worth it!

Happy spring cleaning, everyone!

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Here’s a photo depicting one of my most meaningful, loving, supportive relationships; it’s of me and my very best friend in the world, Nikki:

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If you have any thoughts or insights on this post, you can let me know by leaving a comment below, or reaching out to me via Facebook, Instagram, LinkedIn, Tumblr, Google+ or Twitter. Feedback and thoughtful, respectful comments are always encouraged!

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). 

Check Out Episode 5 of Our Podcast, “Self-Hate and Female Rivalry” — Hammer Time with Nikki and Kate

Hi again, everyone! While half of our dynamic duo is still on her hiatus (during which time, she’ll be creating and starting her own online nutrition-based education/coaching system – Go, Nikki!), the other half, Kate, is here to give you our fifth podcast episode, “Self-Hate and Female Rivalry.” This podcast episode focuses on how we, […]

via Check Out Episode 5 of Our Podcast, “Self-Hate and Female Rivalry” — Hammer Time with Nikki and Kate

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!

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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