Click here to check out my latest Medium.com article, entitled: “Don’t Be Afraid To Say What You Don’t Know…You Know?
Click here to check out my latest Medium.com article, entitled: “Don’t Be Afraid To Say What You Don’t Know…You Know?
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 4, 2018
It’s been a long, long journey since I started feeling the symptoms of my spinal disorder in December of 2015. Since then, I’ve retired from my job (today, actually), gone through a number of painful medical procedures and nauseating pain meds, lost a good deal of mobility and had to adjust to a new “quality” of life. It’s made me feel sad, defeated, depressed and downright incensed.
I’m not a person who easily asks for help or admits defeat. I’m not someone who gives up easily or just accepts her circumstances. I fight. I persevere. I persist.
I made it through neurosurgery at the age of four and relearning how to walk. I’ve made it through thirty years of Type I brittle diabetes. I’ve made it through an eating disorder I created from withholding insulin from myself. I made it through a toxic first marriage and an even more toxic divorce. I’ve made it through dozens of surgeries, all of which occurred while running a successful law practice.
But over the last decade or so, I’ve had to start accepting my physical limitations and the consequences that stem from mistreating my mind, body and soul. My idea of what I’m capable of enduring and achieving in this life has changed; it had to. And that royally pisses me off.
While we were still living in Del Rio, Texas, I realized just how angry I was; not so much at any of the doctors that had demonstrated such horrific bedside manner; not at my poor husband, who was simply trying to keep positive and believe that we would find something, anything, that would help alleviate some of my daily pain.
I was angry at myself, at my shit body. Was it not enough that my diabetes was already waging war against my nerves, my hands, my eyes and my breasts? Was it not enough that I face a huge risk of going blind, having a heart attack, suffering from kidney failure and/or having a limb amputated in the future? Was it not enough that I’d been born with Spina Bifida Occulta and a huge lipoma across my entire back? And that the damn lipoma had wrapped around my spinal cord at the age of four and started pulling on it so tightly that the cord was ready to snap? Now, 28 years after having 90% of the lipoma removed, there was something else happening with my spine?
I now had to wake up each day (and in the middle of many nights) in debilitating pain? Be unable to sit, stand or walk for any ‘normal’ period of time? Endure persistent (inexplicable) muscle spasms all over my body? Pain shooting down my sacral area (i.e., ass), legs and feet? Be so tired that I sleep for 21 out of 24 hours or 30 out of 36 hours, leaving me to question whether I’d fallen into a warped version of a Disney movie and in need of a prince to come kiss me awake? Be unable to use my legal mind, which I’d spent years crafting and refining; which enabled me to perform (what I thought was) my calling in life?
I’m lucky. I have wonderfully supportive family and friends. But not a one could fully understand what I was going through; not a one could seem to counsel me through the rage I was feeling towards my own vessel in life.
I’d only tried counseling once before, and that was when I came to the realization that I needed to get a divorce. That thirteen-year relationship had shattered the person I once was, and I needed help putting her back together. It took a while, but it worked, and I finished counseling stronger than ever before.
But as I sought explanations and treatment for my plethora of symptoms from this (then-) unknown spinal disorder, I realized that I needed help once more. And maybe, more than anything, I needed to find a group of people who could really understand my feelings. I vowed to myself and my husband that as soon as we made it to Detroit (our next destination), I would try to find a support group to join.
My plan had to be adjusted after it became clear that we wouldn’t get to Detroit for a while. There were delays in the application process; then a natural disaster and a government shutdown delayed my husband’s training academy. I came back to Rhode Island last June to stay with my parents while Yvens finished up this job change and training. I’m so thankful that I’ve been able to receive outstanding medical care here while I wait.
But the anger resurged. So my primary care physician referred me to a counselor who focused on helping patients adjust to their disabilities. It’s been so constructive to let some of the steam out of the pot, and it’s been really helpful to have my feelings be validated by someone who hears even more tragic and dire stories than mine on a regular basis.
Still, my counselor supported me finding a support group so that I could share my story and hear similar stories from others in comparable conditions.
As I was searching for a chronic pain support group in Rhode Island, I got news that I’d been misdiagnosed for the last 2+ years. What was actually happening to me was a recurrence of my spinal cord being pulled. Yup, I have tethered spinal cord (“TC”) again. Twenty-eight years after it first tethered.
My dad figured I was one of the rarest medical patients to ever live. He always thought my getting TC to begin with was such an uncommon thing. But my new (and totally awesome!) neurosurgeon assured me that I was not alone in having TC once again. In fact, she’d recently released a tethered cord for a patient who went forty years in between his first and second TC!!
The day after I received my recurring TC diagnosis, I took a shot in the dark and tried to see whether a “tethered cord” support group existed on the World Wide Web. Guess what: I does! On Facebook! So I joined the group and took another shot in the dark; I asked its members whether anyone else had recurring TC. Take another guess: several had! And while some of their stories were a bit bleak (e.g., one woman has had FOUR TC release surgeries in the last fifteen years, and anticipates needing more in the future!!!!), just knowing that there were others like me out there was so sadly comforting.
Of course, I hated that anyone had to endure a tethered cord. It can paralyze you, and often messes with your bowel and bladder functioning (as it has with mine), on top of many other things. And up until a few weeks ago, I didn’t even know that what I had was recurring TC. But it’s been so helpful to be part of a community (albeit, an online community, which, up until this point, I hadn’t been the biggest fan of or participant in) where people just get it.
I’d forgotten just how important it is to find and surround yourself with people who get it; who get you. And it doesn’t have to be all of you; I’m not sure I could ever find anyone (other than myself) who has experienced and felt every single thing I’ve experienced and felt. But in times of stress or pain or loneliness or anger or sadness, it’s essential that you be able to confide in, vent to or simply be with another person who understands; who will know just what to say and what not to say; who can tell you, with authority, what has at least worked for them in the past when they felt the way you’re feeling. It can make all the difference in the world.
And I’d encourage you to be that person for someone else when they need help. Remember how helpful friends, family and even near strangers have been to you in the past when you needed a helping hand or a listening ear.
It’s like this past week, when a good friend called to thank me and my BFF Nikki for our most recent podcast episode, where Nikki and I had discussed self-care and self-love. My friend called to say that she had recently ended a toxic relationship, and had really identified with our mention of ending toxic relationships in your life as part of your own self-care and self-love.
Simply hearing that our podcast struck a cord with another person made me feel incredible! Did I discover the cure for cancer? Nope. But maybe I’d reaffirmed for my friend the validity of her decision to end the relationship. Who knows? Maybe it’ll encourage another listener to do the same with an unhealthy relationship in his or her life. Not that I’m out here trying to break people up; it’s just that Nikki and I wanted to share our discussions and our experiences with others in order to make people’s lives better. We wanted to connect with people, and let listeners know that they’re not alone. We want them to know we get it.
Knowing we’ve done that for even one person out there is pretty indescribable. It’s one of the best and most basic parts of being human; it’s the shared human experience.
Be that for others, and know there are others that will be that for you. Not a single one of us is completely alone.
Get it? 😉
By: Katherine Itacy, Esq.
Dated: January 24, 2018
Both of my parents have demonstrated an obscene work ethic my entire life. And sure, they came right out and told me and my brother to work hard in school and for the things we wanted, but I think that I learned subconsciously to mimic their true workhorse style.
You know how they say: “Work smart, not hard?” Well…that lesson was never taught in our house…. Instead, Mom and Dad just wanted us to take pride in the efforts we put into whatever we did. You give it your 100% best efforts, and you don’t worry about the rest.
I get (or got) this perverse high from working nonstop at full tilt, and it came on quickly in my early teens. As I was getting better at track (and training more and more each passing year), I was also working at Dunkin’ Donuts during weekends and summers. The manager there learned fast that she could use my “Work the hardest you can, even at your own expense” mantra to the store’s advantage. As a young teen, she had me working in the kitchen with the full-time bakers. Later, she had me driving the delivery trucks to their other stores, and opening one of the stores at 5 AM. At the same time, my coworkers learned to let me pick up the slack while they took extra smoke breaks and stole my tips.
You’d think I would’ve learned to ease up the pace a bit, but nope! Not me! It made me proud to come home exhausted from my shift, with my feet aching and my hair and skin smelling like stale coffee grinds and donut grease (despite numerous attempts in the shower to eradicate the smells).
My work ethic only increased after that, to the point where I was running my own law firm, on three different boards of directors, doing pro bono legal work for the RI ACLU and a few select clients, testifying at the RI State House on various criminal justice and civil rights bills, volunteering for a friend’s mayoral campaign, representing a nonprofit on a RI Senate Study Commission and coaching high school track throwers. My obsession with doing my absolute best for all of these clients and entities led me to neglect my diabetes and caused me to have almost forty surgeries and procedures over a four-year timespan.
Even the Deputy Defender at my last job told me (half-jokingly) during my job interview that she’d only come down to the branch office for my interview “to see how tired you are from everything you’ve been doing!”
Looking back on it now, none of it was for fame, accolades or a sense of power. And upon deeper reflection, none of those things were ever praised in my childhood home. The only goal that my parents ever encouraged us to pursue (besides attaining higher education and the pursuit of happiness) was to work hard at whatever we chose to do in life. There were no five-year or ten-year plans in place. We weren’t raised to be doctors or lawyers. They didn’t push us to go to Harvard or Yale. They wanted us to find our own way, and to find our own version of happiness.
Turns out: None of my major life decisions were prefaced with much premeditation.
As contradicting as it sounds, I never plotted out what sport I hoped I’d excel at, or what college I’d work hard to get into, and yet, once I made the decisions, I worked my ass off to give my absolute best to the task at hand. I stumbled upon throwing and had no idea that I’d be good at it. Same with law school! I only considered it after my diabetes precluded me from becoming a federal law enforcement field agent. And the only reason why I decided to run my own firm is because I’d left a few other incompatible associate/partner positions and a friend told me that he’d mentor me through opening my practice.
I have never dreamt of running for public office, obtaining a judgeship or becoming a senior partner at some huge law firm. In fact, I’ve always preferred working behind the scenes. Coming out of law school, I would’ve been perfectly content being a worker bee, doing the grunt work while others received the prestige. I hate politics (personal and professional), and the only thoughts I’d had regarding political positions were that it’d be great to be an adviser and help shape public policy/law without having to do all the hand-holding and deal-making.
I was in my glory in both college and law school, taking up to 20 credits a semester, getting a double major and a minor at Penn State while spending 2-3 school days per week on the road for track meets; doing research for three different law school professors on top of doing internships and writing a 100-page paper on the criminal justice system (when my writing requirement only required that I write 10 pages, if memory serves correct). I didn’t even realize that I was double majoring, or was earning a minor as well. Hell, I was three classes away from a second minor in African and African-American Studies!
It all made me feel useful. It made my life feel purposeful. I felt like I was contributing; like I was soaking up as much knowledge and guidance as I possibly could. Like I was helping as many clients as I could possibly help.
And while I have essentially stumbled upon every accomplishment and accolade I’ve earned since high school, and had no prior plans for any of the educational, professional or activism decisions I’ve made since then, it has somehow all felt like it was meant to be. I can’t imagine what my life would’ve been like, had I not been a hammer thrower or a criminal defense attorney.
If all of this was somehow preordained for me to stumble upon, what am I supposed to believe my purpose is now? I feel so confident that I’m supposed to be practicing criminal defense, representing indigent clients, doing pro bono work and advocating for justice and equity for all. I know I had a skill at legal research and writing. Yet now, I can’t even understand or analyze a single legal case. I’m in so much pain these days, I’m mind-numbingly laid up in bed, with every other thought being: “It hurts so bad!!!”
Almost a year ago now, I came to the heart-wrenching conclusion that I could no longer perform my job duties, and I immediately notified my employer. Just about one of the most soul-crushing things I’ve ever had to admit to myself or others. This workhorse has been put out to pasture. My heart and my soul (and my ego) want to be able to continue contributing to society. My mind and my body have taken that purpose away from me, and it is still something that I am adjusting to. Why put a purposeful soul into a defective body?
Best believe, if I could work, I would. I’ve been working incessantly since I was fourteen years old. I was able to earn a good living running my own law firm, starting at the age of twenty-five, in the midst of a tough economy and an even tougher area of law to turn a profit. I have no qualms about doing hard, thankless work; I’ve sure done it before. In fact, I’ve done a helluva lot of free work, and been more than happy to do it!
The workhorse in me sure isn’t happy about her crap body forcing her to retire. Quite honestly, being trapped in this body is one of the cruelest punishments I could ever receive. It’s stifling my spirit. I’m trying to stay optimistic that life will guide me to stumble into whatever’s meant for me next, but in the meantime, I need to conserve my energy in order to make it through most days. Time to put that workhorse spirit into adjusting to my new quality of life – goodness knows, finding peace with this reality will be the hardest work I’ll have done yet!
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