My husband and I love to travel. In fact, one of the very first things that attracted me to him was what he featured on his online profile. On it, he explained that he loved to experience and better appreciate different cultures. Being Haitian and moving to the United States at fifteen years old, he was hungry to understand how others live, and to witness all of the beauty that the world had to offer. While I’m certainly not from Haiti, I, too, share that yearning to appreciate how others live; to witness the wonders of the world!
Once we started dating, we traveled everywhere! We did road trips from Southwest Texas to Orlando, Florida; from Del Rio, Texas, to Las Vegas, Nevada. Over the last four years, we’ve spent time together in Austin, San Antonio, and Dallas, Texas; in Orlando, Saint Augustine, Delray Beach, Boca Raton, Miami, and Key West, Florida; we time at the Grand Canyon, the Hoover Dam, Salem, Massachusetts, New Orleans and Baton Rogue, Louisana, New York and Boston (among other destinations).
Then that damn tumor regrew, and with that, everything changed. We were actually in the middle of a reggae cruise to Jamaica when the first symptoms hit in December of 2015. I doubled over in pain while we watched a famed reggae singer perform, and Yvens helped me make my way back to our room.
In the three years since, my ability to travel without severe repercussions has plummeted.
Last year, Yvens and I spent the week in Florida in order to spend Christmas with my stepson, Eli, as well as the rest of Yvens’ family. Unfortunately, by the end of it, I had to be wheeled through the Orlando International Airport in order to make it to my gate. That week, I’d also had to miss spending time with the family so that I could rest up back at the hotel (and once, on his parents’ couch). Sadly, Eli knows (at seven years old) that his stepmom gets tired easily and can’t really walk or do much for too long.
Worse still, once I got home from that trip, I had a severe bout of some sort of virus or infection that I’d managed to pick up from someone in the general traveling public. It laid me up for well over a week.
The chronic fatigue and immense pain certainly was putting a damper on our travel plans.
Then the amazing Dr. Petra Klinge of Rhode Island Hospital figured out that that evil tumor remnant had grown a tail, and a glimmer of hope started to spark. Maybe I could get some of my mobility back, or at least some relief from the constant pain and fatigue!
Alas, none of that happened. Yes, Dr. Klinge did an excellent job on the neurosurgery this past March. She managed to remove almost all of the tumor (save for the part that had managed to grow through my spinal cord). But my neurological deficits remain the same, and they are prone to get worse over time.
So what to do? I mean, it’s hard enough to travel with diabetes. Tack on the neurological disorder, and we’re in business!
So when my mom surprised me with a birthday cruise from Bali, Indonesia, to Sydney, Australia, a mix of absolute joy and absurd fear came over me. How could I manage all of the traveling and excursions with my current physical state?? As it was, Yvens and I had decided to cut back on even short trips that could lay me up for weeks to follow. How in the world was I going to manage a cruise on the other side of the world???!?
Imagine trying to keep your insulin refrigerated on a fifteen hour flight from Boston to Hong Kong! Never mind a four hour layover, and then another five hours on the flight to Bali. Thanks to the good people at Burger King, I was able to get a shit ton of ice to keep the cool packs a bit cool during the flights. That being said, it was absolute torture on my back, legs, and feet, even with the assistance of a back brace and an inflatable donut to sit on.
Well, I’m more than halfway through the cruise at this point, and while I can’t say that it’s been easy, it sure has been memorable! I’ve decided that while I may have to take my diseases and degenerative disorders lying down (small pun intended), and be in debilitating pain regardless of whatever I do, I’m still going to make some beautiful memories along the way!
Thankfully, the cruise we’re on is through Viking Cruises, which tailors its travels towards the elderly and infirm population. There are no children allowed as guests, and the atmosphere is very calming and serene. There’s lots of classical music and art aboard, as well as a book exchange throughout the common areas of the ship.
Take a walk to the main dining hall, and you’ll see a wide variety of canes, walkers, motorized scooters, and back braces (almost all of which are already in my artillery). Speak with almost any of the other guests, and you’ll find that a large number of them have had at least a few surgeries and/or grave diagnoses in their recent past.
Amidst ‘my people,’ I feel a little less guilty about my need to modify the cruise experience. I’ve already missed some of the excursions due to exhaustion, needed my cane more than I care to admit, and needed the availability of a yoga mat or two to do some deep stretches after the back pain became much too unbearable. It’s actually been nice to commiserate with the similarly disabled guests! They understand what it’s like to try and mask your pain; to feel weak or that you’re putting someone out if you ask for assistance.
Hell, I almost feel like a burden to our cabin steward, who is eager to clean our room at least twice a day. I feel like telling him: “I promise, you’re doing an amazing job, and more than most, I understand completely what it’s like to expect perfection from yourself in everything that you do. That being said, there’s no way in hell I can leave my bed today, so you’re just going to have to respect the “Do No Disturb” sign on the door for what it is, and try again tomorrow!” But alas…
So I might not be the easiest guest on the ship…I definitely appreciate the experience more than most! While most of the other guests are busy enjoying their retirement years, I’m just trying to suck as much out of life and this world as I can while I’m physically able to enjoy and experience it!
And therein lies the beauty and the curse of being disabled–you are well aware of the brevity of life, for better and for worse. While there’s a lot of anger, resentment, and fear mixed in there with appreciation, perspective, and awareness, I do feel fortunate that I’m making these memories now, while I still can.
I certainly have to pay for them later/during, but to me, it’s worth the extra physical pain and exhaustion in order to feel like I’ve really lived.
Traveling while disabled (TWD) certainly sucks. Trying to find room for my cane in the overhead compartment; trying to keep the ice in my bag from leaking onto the floor of the aircraft; having to stand up and stretch in front of other passengers at very frequent intervals; trying not to cry from the excruciating pain; looking crude and rude as I try and lie down on two-to-three seats at the gate that are without armrests so that I can give my back and legs some much-needed relief. It’s all rather humiliating and attention-causing, but you have to learn to live with it if you’re going to make it through the travel experience.
You just have to prepare. You have to be ready for TSA and Customs to question the amount of pills in your possession, as well as your insulin pump, cartridges of insulin, and pump supplies.
You get ready for the pat-downs and sequestration to separate areas of the airport. For certain countries, letters from your doctor(s) are needed, in which they explain how you’re disabled and just what you need for safe travels.
You have to be ready to hold the security line up as you remove your back brace, place your cane into the scanner, and explain that the device in your pocket is just an insulin pump. Get ready for TSA to ask you to rub the pump with both hands, then have them take samples from both of your hands to ensure that there are no explosive substances on the device or your hands. Be prepared for another agent to withhold your carry-ons from you in order to figure out what the hell those insulin vials and cool-packs really are.
TWD is tricky business. It’s certainly not for the faint of heart or the timid of spirit. You need to be okay with strongly requesting/demanding that each hotel room/ship cabin has, at the very least, a mini-fridge. Ideally, you want to request a fridge-freezer combination so that you can freeze your cool packs for the return trip while you refrigerate your insulin.
For pump users, you have to be prepared that if you swim in the enticing waters, you’re going to get your infusion sets waterlogged. If you don’t have extra to replace them, you’re going to be in trouble!
TWD sure ain’t easy, but I am oh, so thankful to be living in modern times. Besides the fact that I’d be long dead from the diabeetus and all its evil attacks on my various body parts, there are now so many different medical aids and inventions that make TWD a bit less painful on your body.
As an example, I met a woman on the cruise while we were docked somewhere on the Great Barrier Reef. She had a motorized scooter/wheelchair that she bought in order to travel, since she faces pretty severe rheumatoid arthritis. With just the touch of a button on her remote, the device folds into itself until it’s the size of a piece of carry-on luggage! Ingenius! Like one of those fancy prams you see all of the inexplicably rich couples in almost every movie nowadays! Anyway, I’ll certainly be looking into that scooter if I want to continue TWD, as I’m sure the need for it is in my very near future.
In the end, TWD is all about managing your expectations and perspectives. If you’re TWD, get ready for more than a few hiccups. As long as you’re ready for them, they’re not so bothersome. And do your best to see through the pain and limitations. Try, instead, to focus on the amazing sights, smells, tastes, and sounds that come with visiting somewhere new.
Appreciate that even while TWD, you’re able to experience the amazing grace that this world exhibits. Be thankful for advances in medicine and medical devices. Hell, using the insulin pump is unquestionably easier than carrying a cooler with insulin, as well as a bunch of sterile syringes in order to go anywhere!
I’m thankful to be able to TWD. Sure, it’s not what Yvens nor I envisioned for our lives. We’re almost certainly not going to be able to reach all of our desired destinations. But if you’re disabled and still able to travel, I encourage you to do so! You’ll make memories that will carry you through the painful days. It’s more than worth it to boost your spirit!
My love and best to each and every one of you!
Safe travels, and Happy Holidays!
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.
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.
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).
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!
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,
By: Katherine Itacy, Esq.
Dated: December 12, 2017
I grew up thinking that I had fatefully (and narrowly) escaped paralysis. As my mother has relayed to me time and time again, in early 1988, she noticed that I was complaining of lower back pain. Since I had been born with Spina Bifida and a lipoma near my lumbar spine, she knew to immediately get me to a neurosurgeon. After receiving nonchalant (and incredibly sexist) advice from one Rhode Island surgeon to wait to operate so that I could feel confident to wear a bikini (scar-free) when I got older, she sought a second opinion at Boston Children’s Hospital.
That talented and intelligent neurosurgeon explained to my parents that the baseball-sized tumor had wrapped around my spinal cord and was pulling on it, similar to the tension felt when one pulls the cord on a set of window blinds. He warned them that the lipoma needed to be removed immediately, before the tumor snapped the cord and left me paralyzed. I had surgery in March of 1988, at the ripe old age of four, and re-learned how to walk. We followed up with yearly MRIs until I was twelve years old, since there were remnants of the tumor that were too close to the cord to safely remove.
Except for some swelling and lower back pain when I exercised, I really didn’t worry too much about the tumor after that. Sure, I didn’t feel confident to wear a bikini in public, since the surgeon had to pack my lumbar region during surgery in order to reinforce my back; but then again, I also didn’t have to spend from age four on in a wheelchair. I considered myself pretty fortunate, bikini-clad or not.
As I’ve previously mentioned, I’ve had a rough go of it with my diabetes since my early 20s. I’ve had dozens of surgeries to save what’s left of my vision, to maintain some use of my fingers and hands, and to keep my left breast from being completely taken over by large, benign tumors. The eye surgeries have messed with my depth perception, almost completely obscured my peripheral vision, and made it near impossible to drive at night.
I was adjusting to my diabetic-related complications. I even gave up my law practice and moved myself and my two miniature Shar Peis clear across the country to start a new, more balanced life. For the first year in Texas, I lost weight, was able to exercise almost every day, and got most of my diabetic-related conditions under control.
Then the proverbial ish hit the fan.
After feeling the sensation of electric shocks to the base of my spine, I received news that the 1988 surgery had caused scar tissue to form inside a sac of nerves below my lumbar spine. The scar tissue had caused the floating nerve roots to clump together, and to adhere to the wall of the sac. The condition is called adhesive arachnoiditis, and it is incurable and inoperable. All of the sudden, I am once again at risk of paralysis. I could also develop dementia at any time due to the disorder.
For the last two years, this condition has caused me debilitating pain in my lower back, legs and feet; it has caused dysfunction to my bowel, bladder and sex organs. It has caused persistent, seizure-like muscle spasms all over my body. Steroid injections, epidurals, radio-frequency nerve ablations, narcotic drugs and a trial run of a spinal cord stimulator have all failed to alleviate the pain. I am on the maximum allotted dosages of Lyrica and Cymbalta to address the nerve pain, and they barely scratch the surface.
My work at the Office of the Federal Public Defender in southwestern Texas was to conduct legal research, provide trial-related advice, draft legal court filings and give presentations regarding criminal defense issues to the Assistant Federal Defenders in the District, as well as to the court-appointed attorneys in the area. I loved my work. I was good at my job. But once I developed the arachnoiditis, everything fell apart.
Soon after the diagnosis, the pain got so intense that I could no longer concentrate on my work. Every few seconds, my brain would redirect its attention to the pain in my body. I couldn’t sit, stand or walk for any meaningful period of time. A few months in, after I’d had to take days off or ask to work from my bed at home, a colleague of mine brought in a camping cot for me to use in the office. Even that wasn’t enough, because I found myself unable to read any caselaw or write any court filings. I couldn’t do my job. I couldn’t even think like a lawyer anymore.
I got so angry at my body. What kind of sick joke was this? I get saved from paralysis at age four, only to find my out nearly thirty years later that the surgery that had saved me from the paralysis has led to a condition that puts me at risk of paralysis? Was I living in my own version of Sliding Doors? Did it not matter whether I had the original surgery or not, since it would all still lead to the same result in the end? Or was I only meant to have mobility in my youth, so that I could play sports and earn a college scholarship?
Was it not enough that my diabetes was aggressively attacking half of my body parts? Did I do something so heinous in a past life that I deserved to suffer so much in this one?
I’d like to consider myself a pretty tough, resilient chick. I’ve endured well over forty surgeries over the last ten years and still managed to pursue a career that gave my life meaning. I found what I believed to be my calling in life. I was helping to change lives for the better. I had joined the boards of nonprofits that did incredible work to better society. I was surrounded by colleagues and mentors who I admired and applauded for their lengthy careers doing what I hoped to mimic, even in part. I was sopping up the knowledge and experience of others, and I loved it. And then I lost it all.
I had to quit my job. I had to stop practicing law. I can’t even think of rejoining any nonprofit boards or starting back up with any volunteer work. Besides no longer being able to read and analyze caselaw or draft any legal filings, I have to save all of my remaining energy on visiting the vast number of doctors that I need to see in order to maintain my health. So now I spend most days laid up in bed, falling asleep for 3-5 hours during the day due to my meds and/or the pain. Some days, it’s too painful to stay awake.
I’ve gone from being an elite athlete to being unable to even go for walks. I’ve gone from running a successful, meaningful law practice and being on the board of three amazing nonprofits to being unable to work in any capacity. What once identified me (athlete, activist, criminal defense attorney) is now only referred to in the past tense.
What should I make of all this? I’m not trying to throw myself a pity party, but I’m having a hard time adjusting to the screeching stop of almost everything that I both loved to do and was good at. I know that a lot of people have it worse than me. I know that I should consider myself lucky to have experienced all that I have at my age. But I’m pissed.
It’s not really even about my sudden lack of mobility or the fact that apparently nothing can provide me with consistent, significant pain relief. I’m more pissed about being stopped from continuing to pursue my calling in life, and from being an activist for issues that are in desperate need of reform. Believe me – I know that far more talented and qualified people have already picked up my slack, and that so many more will follow in my absence. I’m not diluted enough to think I’m irreplaceable, or that I’ve even made more than a few drops in the ocean of change that my peers and mentors have already made to the causes I love so much. But is this really it for me? Is this all that I will contribute to the world? I had a small taste of activism, and I want more.
I have no idea what’s waiting for me in the future. My condition could plateau for a while, or it could take a drastic, sharp turn for the worse. I could become paralyzed and/or develop dementia at any time now, and if I lose the only remaining piece of my identity (my mind), there’ll really be no more “me” left.
I’m trying to come to terms with all of this. The main reason why I want to write my book now is because I need to get it all out while my mind is still somewhat intact. I feel like maybe the things that I’ve been through in my life might be able to lessen someone else’s pain, or at least make them feel like they’re not alone in their struggles. I have to get it all out while I still can. Maybe if I do, it can serve as some smaller version of activism. Maybe then, I won’t feel like my life’s purpose stopped before I even hit 35.
I guess only time will tell.
By: Katherine Itacy, Esq.
Dated: November 13, 2017
Living with Type-I (juvenile) diabetes can be really frustrating and painful, but until I started experiencing symptoms of arachnoiditis in December of 2015, I didn’t quite know just how frustrating and painful it could be to live in my body.
Arachnoiditis, as I would come to quickly learn, is an incurable spinal nerve pain disorder that is referred to by some as “humanity’s worst pain.” While I haven’t experienced a wide assortment of pain in my life, I have endured well over forty surgeries and procedures, so I can objectively state that it is, indeed, the worst pain that I have ever experienced. It has included: the sensation of electric shocks to the base of my spine; a seizing pain up my entire back; a stabbing pain in my lower back that (no pun intended) feels as if someone has plunged a knife into the body part and left it there; throbbing, pulsating pain to the lower back, buttocks, legs and feet; and severe, persistent episodes of muscle spasms, including one episode that made my entire body violently convulse for over three and one-half hours straight. I have also become unable to sit, stand or walk for more than a few minutes at a time. The pain has made me double over; other times, it has made my knees buckle beneath me as I stood.
Besides the obvious frustration of a former elite athlete now being unable to do any aerobic exercise at all, the more frustrating part for me has been the fact that the pain is so bad, I have been unable to maintain my focus or attention on pretty much any mental task for more than a few minutes at a time. I began to notice that whenever I would be doing my work, my brain would get distracted and redirected to the pain. And since my job as a legal research and writing specialist required me to constantly conduct legal research and draft legal court filings (both of which requires an extreme amount of mental focus), that meant I could no longer do my job. Leaving my job nine months ago crushed me, because it symbolized so much more than merely leaving a job – it symbolized the end to what I truly believed was my calling in life – criminal defense of the indigent. My days now usually consist of laying in bed for around 22 hours each day, and taking approximately 34 different prescriptions and supplements in varying quantity before and after each meal. If the combination of medical conditions and pills aren’t causing me to fall asleep for 4-5 hours in the afternoon, the pain is usually waking me up or keeping me from sleeping.
Following my diagnosis, I have had a number of MRIs and CT scans and EMGs done on my body. I have had nerves burned, facet joints injected with steroids and a spinal cord stimulator temporarily implanted – all to no avail. And by the way, if you’ve ever wanted wanted to know what it feels like to have your spinal cord plucked like the strings on a heavy metal guitarist’s instrument every time you sneeze, cough, clear your throat or laugh, give the spinal cord stimulator a whirl! To help you understand my current level of pain, I have asked my new pain specialist to try implanting the trial version of the stimulator in my back yet again, despite the fact that just nine months ago, I fiercely vowed never to give it another try.
Another thing I have discovered over the last two years is that there are very few doctors who understand the disorder well enough and are motivated enough to try and find alternate treatment methods beyond the typical prescription of Lyrica, Cymbalta and opioids. I have met with numerous neurosurgeons, neurologists and pain specialists; the majority of whom left me with little more than a shrug of the shoulders and the reassuring opinion that there is nothing more they can do to help me.
It wasn’t until I found, consulted and met with Dr. Forest Tennant in West Covina, California, that I felt there was a doctor out there who cared to do more than just send patients home to suffer from “humanity’s worst pain.” When we met in person this May, Dr. Tennant explained that he was supposed to retire almost twenty years ago, but decided to stay on as a pain specialist in order to focus on finding a new treatment protocol for arachnoiditis patients. He did so after treating cancer patients in Los Angeles for many years. Sadly, it was his arachnoiditis patients who were killing themselves in order to stop the pain. Others were left partially or completely paralyzed, in need of catheters in order to void their bladders, and/or suffering from dementia.
Since 1998, Dr. Tennant has reviewed hundreds of MRIs of arachnoiditis patients, and has come up with alternate treatments to the typical pain treatment protocol that most other doctors use. He has refused to believe that there was little to be done to help patients with this horrendous disorder. Excitingly, his new treatment regimen has afforded his patients significant reductions in their daily pain levels.
Unfortunately for me, with my almost lifelong diabetes in play, the treatment protocol has not given me much relief. The hormones that have helped almost all of the rest of his patients are affecting my blood sugar levels too much to be continued. I also have significant diabetic neuropathy in my arms and legs in addition to the arachnoiditis, which means that most days, my legs already feel like they’re on fire.
Thankfully, just knowing that there is a doctor like Forest Tennant out there, giving his all in order to find more relief for his patients, gives me so much hope. But for now, I remain in so much daily pain. I try not to complain too much about it, especially since complaining does little to change the situation for the better (other than let me vent my frustrations). Unfortunately, trying to get people to understand exactly how much pain you’re in is difficult when they can barely see any physical manifestations of it. To that point, I’ve become pretty good at masking my pain in front of others. Since I’ve been masking the sensation of feeling drunk every time my blood sugar has gone low for the last 29+ years, I’ve certainly had some practice in this department. But just because I am able to mask some of the pain does not mean that it isn’t there (in full force).
It wasn’t until I began masking my own pain that I started to wonder how others with chronic pain managed to get through their days. How do they function through the pain? Do others in their lives fully understand and appreciate their daily struggles? How many people with chronic pain disorders are out there, unknown to the rest of us (like Lady Gaga, who recently revealed her struggles with chronic pain in her new documentary)? Just because some of them are able to function and complete some daily tasks does not minimize the amount of pain they could be feeling. In fact, sometimes it’s those who are suffering silently who have, perhaps, more inner strength than the average person.
If you or a loved one has been living with a chronic pain disorder, I’d love to hear about your coping mechanisms and support systems. Even if you just want to vent, please feel free to either email me or leave a comment below.
Wishing you and yours health and happiness!
By: Katherine Itacy, Esq.
Dated: November 1, 2017
November is National Diabetes Month in America. According to the CDC, “More than 30 million people in the United States have diabetes, but 1 out of 4 of them don’t know they have it.”
Thankfully, my mom was (and continues to be) a registered nurse, so she noticed several things in my behavior and health when I was four years old that indicated diabetes (i.e., excessive thirst and frequent urination). She caught it quickly and brought me up to Boston to the Joslin Diabetes Center, where they took excellent care of me.
While my mother and my doctors provided me with excellent care and diabetes-related education, I spent most of my youth thinking that diabetes was not going to slow me down. I kept telling myself: “I have diabetes, but I am not a diabetic!” But the truth is, diabetes has ended up having me. It has taken over my body. It has attacked my sensory nerves in my arms and legs; it has worsened my circulation; it weakens my immune system and makes me more susceptible to illnesses; because of it, I heal very slowly from cuts and scrapes and am prone to infection; it has deadened nerves in my wrists and elbows; it has caused the blood vessels in my eyes to leak, my eyes to hemorrhage and cataracts to form; it has caused benign tumors to form in my breasts, and has caused such inflammation in my fingers that the tendons get stuck as I try to bend and straighten each digit.
As a Type I Diabetic, I am at risk of going blind, going into kidney failure and having my toes or limbs amputated. I am even at greater risk of heart disease and strokes.
Now, I am at least partially to blame for the speed in which my diabetes has worsened. There were a number of years during which time I ignored my blood sugars and intentionally failed to cover all of what I was eating with the appropriate amount of insulin. I have been through a lot in my life; most of which, good or bad, I do not regret. But I do regret not taking better care of my diabetes.
A medical professional said to me earlier this year that he wished diabetes was called “diabetic cancer,” so that his patients (and the general public) would take it more seriously and understand the severity of the disease. Now, I have never had cancer, so I cannot say whether that is a fair comparison. What I will say is that even after receiving the best medical care out there, and the best diabetes-related education from both my mother and from Joslin, I unequivocally failed to take my diabetes as seriously as I should have. Because of that, I will have to accept the fact that I may have lived longer, and suffered from less diabetes-related health complications, had I taken better care of myself.
Now thankfully, medical treatment for diabetics and diabetes prevention has come a long way since I was diagnosed in April of 1988. I am now using an insulin pump that works pretty similar to what one would expect from an artificial pancreas. Had I been born recently, things like the Medtronic 670G insulin pump could have helped keep my diabetes under much better control. Like I said, I will have to live with the bad decisions I have made over my healthcare. But hopefully, future generations will not have to suffer as I have.
Hopefully, if I do not see a complete cure for diabetes in my lifetime, I will at least be alive to see when diabetes is no more of a burden to the newly-diagnosed than having high blood pressure or cholesterol. Until that day, it is essential for the general public to keep themselves educated and informed about diabetes and its warning signs, treatments and potential complications.
Please, use me as a cautionary tale – no one wants to go through the amount of pain and discomfort that I have endured if they can help it. And you can help it. I have a very uncertain future ahead of me, health-wise. Yours doesn’t have to be. Stay informed, my friends!
To learn more about my life journey with diabetes and other health struggles, keep an eye out for my book, From National Champion to Physically Disabled Activist: My Lifelong Struggle with a Diseased Body, and the Lessons it has Taught Me Along the Way, which will be submitted for publication soon!
By: Katherine Itacy, Esq.
Dated: October 14, 2017
Okay, so I have been a frequent flyer of the healthcare system for pretty much my entire life. Besides having met with my diabetic specialist every 3-6 months for the last 29 years, I have had at least 45 different surgeries/procedures during that same time frame (the majority of which having occurred between 2010 and 2014), have undergone countless MRIs, CT scans, X-rays and/or mammograms, and have visited most specialists more times than I care to admit.
My diabetes has led to my body attacking several of my body parts, including my eyes, my hands, my wrists and elbows, my breasts, and the nerves in all four limbs. My eyes suffered from diabetic retinopathy, which basically means that the blood vessels in the eyes were leaking.
Between 2010 and 2014, while undergoing 24 separate laser eye surgeries (each involving the ophthalmologist shooting 600 laser points into my eye while I am awake and screaming), I was visiting the doctor and his support staff about once every two months, if not more often. It was like Cheers – everybody there knew my name! I would often joke that my punch card must entitle me to a free surgery after all the previous purchases I had made! (Ok, so I never said it was a good joke….)
And for most of my 33+ years being a professional patient, I have been very fortunate to have had some wonderful doctors. But as I started seeing more and more specialists (you know, rheumatologists, breast surgeons, general surgeons, orthopedic surgeons, endocrinologists, neurosurgeons, neurologists, pain specialists, urologists, gastroenterologists…basically anyone with an -ist or a surgeon in their title), I started noticing how some of these doctors ran their practices somewhat akin to puppy mills. There was no getting to know the patient or their concerns. There was no getting to know the patient’s history, beyond what you can cram into the 2-4 paged patient intake forms that have become the bane of my existence. In fact, there was almost no speaking between the doctor and patient at all. And if I had a particular question or had the nerve to ask about alternate treatments or potential side effects to a new medication (especially considering how it may interact with the multiple other medications I am already on), I was repeatedly dismissed or downright ignored.
After I had my 24 laser eye surgeries, and after also having had two vitrectomies to remove blood from my eyes after they both hemorrhaged, two cataract surgeries, two surgeries to remove scar tissue from the new cataract lenses, and about a half-dozen Avastin injections into my eyes, my ophthalmologist in Rhode Island explained to me that there were no more laser surgeries to be done. My eyes had developed so much scar tissue from all of the previous surgeries, there was no way to get visualization of my leaking blood vessels. All that was left was to keep monitoring my vision and hope that I did not become blind.
Once I moved to Texas, I made an appointment to meet with a new ophthalmologist in the area. I filled out those godforsaken patient intake forms, was taken in for some initial tests, and then went in to see the doctor. He quickly did a visual scan of my intake forms and then said: “You haven’t had any eye surgeries in the past, have you?” …. Not off to a great start. I then explained my vast surgical history, and told him that it had been over two years since my last laser surgery.
Knowing nothing else about me (other than the fact that I was an insulin-dependent diabetic and had an extensive history of diabetic retinopathy), this doctor decided to then ask/accuse me of the following: “Why has it been over two years since your last laser surgery? Is it because you’re neglecting your diabetes?”
Excuse me. Had you asked me politely (and allowed me to actually respond), I would have told you that my prior specialist was unable to do any more surgeries because of the excess amount of scar tissue in the eyes.
After hearing my explanation, the lovely doctor then conducted a visual exam of my eyes and concurred with my previous doctor’s analysis.
I was actually astounded by this man’s judgment of a patient he had met only moments before! Could he not help himself but to speak condescendingly towards a patient who had been suffering from Type I diabetes for almost thirty years? As if this patient wanted to be at risk of going blind, and had chosen to do nothing about it?
I have so many more horror stories I could share with you, but I’ll spare you the pain and go on to finally make a point.
I understand that medical professionals are overworked. I understand that they have to deal with insurance companies and with federal regulations regarding online patient records. I understand that some patients are a handful, and are doing little-to-nothing to help themselves have better health.
Indeed, as a criminal defense attorney who ran her own practice for 5 years, I have certainly experienced being overworked, underpaid, overloaded with paperwork and unappreciated by the most time-consuming and frustrating clients imaginable.
But as a professional who has advanced knowledge and/or training in his or her area of expertise, you have an obligation to your patients/clients to help them in their hour of need. Now, I may be a bit biased in this regard. I always tried to follow a holistic, client-focused method of practice, even if it was at my own expense (health- or time-wise). I tried to empathize with the fear a client faces when arrested or incarcerated for the first time, or with the despair an appellate client starts to feel when he is facing a lifetime in prison if his appellate remedies are exhausted. I have taken the time to consider how a client feels when people are picketing outside of his family’s home, or how alone a client with mental health issues feels as he spins ‘round and ‘round the revolving door of imprisonment because he is homeless and doesn’t have the mental capacity or wherewithal to obtain the proper medication to quiet the voices in his head.
I know that there are patient-focused doctors out there, just as I know that there are an excessive number of careless or profit-obsessed attorneys. But there seems to be more and more medical professionals who are angry at the current status of the health care and insurance systems in America, and are taking it out on their patients.
Remember to find the humanity in each and every one of your patients. You are treating a human being, not a medical cadaver. Each person’s body is unique and carries with it its own set of medical issues and bodily limitations. Therefore, not every patient’s body is going to respond the same to the same treatment protocol. You are no longer in med school, being quizzed on a hypothetical set of facts presented for your diagnosis. Your patient is likely to be afraid, maybe even terrified. They are counting on you to help them understand what is going on; whether they have a clean bill of health or have 3-6 months to live. The very last thing he or she needs is to feel judged.
So maybe you can take a few more minutes out of your busy schedule, look up from your laptop and have a face-to-face conversation with your patient. If my own history as both a lifelong patient and a former owner of a professional services practice is of any indication, your practice (and your soul) will never suffer from treating your patients with even just a bit more empathy. And it will make all the difference in your patients’ lives.
To read more of my thoughts on this subject and more, please keep an eye out for my upcoming book, and feel free to follow me on Twitter at @katherine_itacy