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Learning How to Be “Full of Beauty”

By: Katherine Itacy, Esq.

Dated: February 16, 2018

As I mentioned on my very first podcast with my best friend, Nikki Marchesseault, “Hammer Time with Nikki and Kate: A Disabled Lawyer and a Personal Trainer Walk into a Podcast,” I recently read this amazing book, “Love Warrior,” by Glennon Doyle Melton. I’d heard it was a good book, and I was looking for a new memoir/autobiography to read, so I gave it a chance.

Man, was a captivated within a few pages! This woman can write. She is an incredible storyteller, and was so unabashedly honest about her struggles with bulimia, drug and alcohol abuse, and generally feeling like an outsider in the world.

She explains that after a very long time of abusing and neglecting her body, she finds out that she’s pregnant, and decides at that very moment that she will quit her methods of self-abuse cold turkey in order to protect her child’s health and embrace her new role as a mother.

Glennon and her partner then get married; they end up having three beautiful children, and she really enjoys getting into her new roles of wife and stay-at-home mom.

Unfortunately, ten years into the marriage, her husband admits that he’s been having one-night stands since just a few months after their wedding. At this point, Glennon has to decide what her future is going to look like: Will she stay with her husband? If she does, will she ever be able to trust him or be intimate with him again? If she files for divorce, how will her life as a single mother work when the rest of her family lives miles and miles away? How will it work out with co-parenting their children if she’s still so mad at her husband?

At this point in the book, Glennon describes her anger and feelings of utter betrayal at this seemingly perfect man destroying the family that she has been so fully invested in for the last decade. She turns to spirituality and goes to counseling, does yoga and controlled breathing, and eventually realizes that if she can ask her higher power for forgiveness at being a flawed individual, then maybe her husband isn’t a monster – maybe he’s just flawed, too, and is entitled to the same forgiveness from God that she is.

As she tries to co-parent, stay strong for her kids and heal herself, Glennon finally takes the time to care for her mind, body and spirit. Of course, this is really uncomfortable for her, because she’s never had a healthy relationship with her body, with food or with her feelings. She wants to run away from her emotions, but she learns the way of the Warrior, and works each day to submerge herself in her feelings and process them for as long as she can bear. The next day, she does the same thing and tries to process them for just a little bit longer. She doesn’t try and go from broken to full healed in a day, a week, a month or a year; she accepts that this will be a lifelong process for her, but as long as she keeps working on it, she will be able to get through it, as well as anything else life throws her way.

Anyway, all of this back story is to say that by the end of the book, Glennon has finally started to understand what self-love is all about, and how by taking the time to tend to her mind, body and soul, she will be a better person, writer, minister, wife and mother.

I think a lot of us, especially women, forget about this. We think that completely sacrificing ourselves to our partner or our children or our career is what is required or expected of a “good” wife, mother or professional. But once we get to the end of our lives, do we really want to have sacrificed who we are for the sake of others? Is that really doing anyone a favor? Would you want your daughters to do the same thing to themselves when they get into a relationship or start a family?

I’m certainly guilty of this. As I explain in my upcoming book, I spent years neglecting and abusing my body for the sake of my career, my clients and my now-ex-husband. Without a doubt, doing so has shortened my lifespan, made me unable to bear children, and severely impaired my quality of life. I had so little regard for my physical form that I damn near killed myself in order to help others and make my then-husband happy. How was that fair or respectful to myself in any way? Why did I think so little of myself and the quality of my life? Where did I learn to do that? Why did I think that was okay?

Anyway, Glennon ends “Love Warrior” by detailing a conversation that she had with her daughters about what it means to be “pretty” or “desirable” in this world. She explains that the definition of “pretty” is an always-changing idea crafted by corporations in order to sell products, so instead of wanting to be “pretty,” why don’t you try to be “beautiful,” meaning “full of beauty”? Figure out what you love in the world (e.g., dancing in your room, singing in the car, being near the ocean, volunteering for a charity, going to Bible study, being with your family, whatever it is that makes you happy), and fill yourself up with those experiences each and every day.

I can completely identify with and embrace her definition of beauty. Being a beautiful person should mean nourishing your mind, body and soul, and then making your happiness something that you can share with others. It may be hard to practice everyday, especially with how busy our lives can get with the mundane, everyday tasks, but the more often you can practice self-love, the more beauty you can share with the world.

It may have taken me a very long time (and becoming physically disabled) to understand and appreciate the importance of self-love, including nourishment and care for your physical form, but I get it now; thanks, in large part, to Glennon Doyle Melton.

I have now vowed to try and fill myself with beauty each and every day of my life, for the rest of my life, and I would encourage each and every one of you to do the same. I guarantee that you’ll be the happier for it, and our world will be that much more beautiful because of it.

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

By: Katherine Itacy, Esq.

Dated: January 24, 2018

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

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

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

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

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

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

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

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

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

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

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

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

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

And yet.

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

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

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

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

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My So-Called Interracial-/Intercultural-Married Life

By: Katherine Itacy, Esq.

Dated: January 1, 2018

On this January 1, I came to find myself serving the Haitian Independence Day soup (known as “soup joumou”) to my Italian-/French-/Scottish-/Irish-American family. You see, this New Year’s, I am staying at my parents’ home in Rhode Island while my husband attends a law enforcement academy in Georgia. For these past three New Year’s, I have made my greatest attempts to come as close to the delicious Haitian soup as possible (knowing full well that it tastes nowhere near close to the real thing!). But for the first two years, it was prepared just for myself and my husband while we lived in Southwest Texas.

While making soup joumou is still a new tradition for me, it was very important for me to continue this tradition in Rhode Island, and to share it with my immediate family. It is my belief that when you partner with or marry another person, you should immerse yourself in their culture and traditions, and should be open to sharing your cultures and traditions with them. Having a greater understanding and appreciation for those things means that you have a deeper understanding and appreciation for who your partner is.

Now, I’m certainly not trying to say I’m an expert in Haitian culture, but I do love to learn more about it! In fact, after learning the story behind why Haitians eat soup joumou every January 1 (their Independence Day), I have to say – it’s one of the most badass traditions I’ve ever heard of! To commemorate the first successful slave rebellion by eating the soup that the slaves used to have to serve to their slave-masters?? I can’t think of a more befitting way to celebrate the independence of the Haitian people, and to keep that rebellious and resilient spirit alive!

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Preparing to make the soup joumou takes about two-to-three days, and the actual cooking process takes about two-to-three hours. During this time, I reflected upon the last year, considered what’s in store for me in the coming year, and thought about the audacity of me trying to expose my family to some Haitian culture. Who am I to share this story or this tradition?

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Yes, I am the wife of a Haitian man, and the stepmother to a Haitian-American child; but where do I get off trying to educate others about a culture that is not my own? These questions made me reflect upon the last (almost) three years, and what it has meant to be in an interracial-/intercultural-relationship. My husband and I could not have lived more different lives growing up, and for many things, have such different views and opinions from one another.

That being said, most of our relationship comes really easy to the two of us. We fell in love with one another, and decided to get married. To us, it really didn’t matter that we are of different races. Yes, a white woman married to a black man in America makes certain things more difficult for us. I have gotten used to the occasional black woman giving me the side eye because I am in a relationship with a black man.

Sadly, two of my all-time favorite artists (both of whom are strong, independent black women) have publicly stated their disapproval of black men marrying white women in America. I understand their viewpoint that as black women, who have traditionally toiled and endured in order to support and care for the black men in their lives, feel betrayed and disrespected when their men choose to build lives with women outside of their race. But both my husband and I are of the belief that if you fall in love, the color of your partner’s skin should not stop you from being together. Thankfully, we live in a post-Loving v. Virginia America; but Americans sadly aren’t universally accepting of relationships such as ours.

Sure, interracial-/intercultural-dating or marriage requires some additional education, empathy and understanding than the traditional relationship. And no matter how much I immerse myself in my husband’s culture, I will never fully understand what it was like for him in Haiti; nor will I ever fully understand what it is like for a black man in America (no matter how many African/African-American Studies classes I took in college, or how many Ta-Nehisi Coates or Michelle Alexander books I have since read). Not to mention, you are almost guaranteed to encounter a few ignorant assholes along the way who are anything but fans of your relationship. But if you’re willing to open yourself up to learning more about a segment of the population that you know little-to-nothing about, the relationship can have the extra benefit of making you a more empathetic, culturally-educated person. Talk about a win-win!

So, as my family and I enjoy my version of the soup joumou, I consider myself lucky to have met a man who is so willing to educate me about his traditions and experiences on this earth. Not only is the soup delicious, but it allows me to celebrate who my husband is and where he comes from. Quite a way to start off the new year, don’t you think?

Happy New Year to all of you, my dear friends and readers. I hope to finish writing my book and submit it to publishers by the end of this year. I hope that each of your resolutions come true, and that you all have a safe, happy and healthy new year!

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The Mindfuck that Comes with Adjusting to a Debilitating Disability

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.

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Chronic Pain – Suffering in (Quasi-) Silence

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!

– Kate

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National Diabetes Month Starts Today – Be Aware and Spread the Knowledge!

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!

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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!

To follow the CDC regarding all things diabetes, check out their twitter page at @CDCDiabetes. To follow the Joslin Diabetes Center, their Twitter handle is @JoslinDiabetes.

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A Sincere “Thank You!” to the Rhode Island Interscholastic League, and to My Dad

By: Katherine Itacy, Esq.

Dated: October 22, 2017      

As it gets closer to Wednesday’s Hall of Fame induction ceremony, I have been reflecting more and more upon what the Rhode Island Interscholastic League (“RIIL”) has meant to me. The simple fact is, RIIL changed my life, and has afforded me more opportunities and experiences than I could have ever hoped to have experienced in my lifetime.

You know, even though my family (the Johnstons) have been successful in the hammer and weight throws long before I picked either one up, I actually stumbled upon the events by pure happenstance. When I started high school, the hammer and weight throws were relatively new events for females. In fact, it wasn’t until the summer before my senior year that the women’s hammer throw became an Olympic event. So when my high school track coach told us in 1998 that the events had recently been added to RIIL-sponsored track meets, he asked for some volunteers, and I was one of the girls who signed up.

By the end of my four years competing as a Rhode Island student-athlete in high school track and field, I had accomplished the following:

  • Gatorade Rhode Island Girls Track and Field Athlete of the Year – in 1999, 2000 and 2001
  • Rhode Island high school girls indoor track and field state champion – weight throw – in 1999 and 2000
  • Rhode Island high school girls outdoor track and field state champion – hammer throw – in 1999, 2000 and 2001
  • Former Rhode Island high school girls indoor track and field state record holder in the weight throw (set in 1999 and again in 2000)
  • Rhode Island high school girls outdoor track and field state record holder in the hammer – tied with existing record in 1999; set a new record in 2000, and again in 2001 (which remains the state record to this day)
  • National high school girls indoor track and field champion – National Scholastic Indoor Championships – weight throw – in 1999, 2000 and 2001
  • National high school girls indoor track and field champion – Nike Indoor Classic – weight throw – in 2000 and 2001
  • Former sophomore-class national record holder in the girls’ weight throw (set in 1999)
  • National high school girls outdoor track and field champion – hammer throw – in 1999, 2000 and 2001
  • Only three-time national champion in the girls’ hammer throw in National Scholastic Outdoor High School Track and Field Championship history
  • Former freshman-class and sophomore-class national record holder in the girls’ hammer throw (set in 1998 and 1999, respectively)
  • Trained at the Olympic Training Center in Chula Vista, California in 2000
  • Filmed a training video for the hammer throw for United States of America Track and Field in 2000
  • Member of the 2000 United States Track and Field Junior National Team, competing in the 2000 World Junior Track and Field Championships in Santiago, Chile
  • Received almost 70 formal recruitment letters/packets from NCAA Division I schools, and ultimately accepted a full athletic scholarship to attend The Pennsylvania State University

Funny thing is, I honestly don’t remember doing half of these things; it was my father who had to remind me. See, more importantly than any award or record, the bond I shared with my father during my eight years of track and field was (and still is) one of the most important and best things that could have ever happened to me. He was (and remains) my biggest supporter (along with my mom); he was my coach (along with my uncle), my talent agent (moderating and keeping account of all the college recruitment letters and phone calls), my strength trainer and my best friend. Over eight years of competitions, spanning from New Hampshire to Florida, North Carolina to California, Canada to Chile, and including each and every RIIL-sponsored local meet, my father only missed two of my performances! That was while commuting every work day from Warwick, Rhode Island to Boston, Massachusetts for work.

The discipline, the sense of sportsmanship, teamwork and sacrifice, the collegiality with my fellow competitors and the sense of self-worth as a young female and as a student-athlete – they can all be attributed as much to RIIL as they can to my dad, Keith Johnston. That is why I feel so indebted to both.

Indeed, I am absolutely certain that any success or accomplishments I have achieved following my 2001 graduation from Warwick Veterans Memorial High School can be directly traced back to my time participating in high school sports, as well as to the time spent and sacrifices made by my father to help me achieve my best.

So on Wednesday night, as I am inducted into the RIIL Hall of Fame, I will be accepting this great honor on behalf of myself and my dad, and in great reverence to RIIL. You have changed my life infinitely for the better, and I am so grateful to be a part of RIIL history. Thank you.

You can follow RIIL on Twitter at https://twitter.com/riil_sports or on Facebook at https://www.facebook.com/RIILSports 

For last-minute tickets to the event, which must be purchased prior to Wednesday’s event, visit: http://www.riil.org/page/hot_news/view/11 

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Where, Oh Where, Has Patient-Focused Healthcare Gone?

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

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Welcome, readers!

My name is Katherine (Johnston) Itacy, and welcome to my site! I intend to use this site to explain who I am, the journey I’ve been on, and the lessons I’ve learned along the way.

Born and raised in Warwick, Rhode Island, I am a 29+ year-long Type I Diabetic who threw the 20-pound weight and hammer throw in high school and college. After setting both state and national high school records, winning eight national high school championships and competing in the 2000 World Junior Track and Field Championship in Santiago, Chile, I earned an athletic scholarship to Penn State.

Later, I earned an academic scholarship to Roger Williams University School of Law. I loved law school; I joined both the moot court board and the trial team, conducted research for several professors and a private attorney, and graduated fourth in my class. I spent a year working for a private criminal defense attorney before pairing up with a classmate in his practice, and eventually, going out on my own. I spent five years running my own law firm in Rhode Island and Massachusetts, focusing on pre-trial, trial and appellate work for criminal defendants, and hearings and appeals for convicted sex offenders. I joined the Rhode Island and National ACLU board of directors, as well as the Rhode Island Association for Criminal Defense Lawyers board of directors, and did pro bono work for both the ACLU and for indigent criminal defendants.

Running my criminal defense law firm was the most rewarding experience I have ever had, but it took its toll on my diabetes. During four of the five years I ran the practice, I underwent over three dozen surgeries. Diabetes had attacked my eyes, my hands, and the nerves in my elbows and wrists.

In November of 2014, I took a job in Del Rio, Texas, as a legal research and writing specialist for the Federal Public Defender’s Office for the Western District of Texas. I loved my work there, but my health began to deteriorate further, to the point that I could no longer perform my job responsibilities. I developed an incurable spinal nerve pain disorder called adhesive arachnoiditis, as a result of a 1988 lipoma/tethered spinal cord surgery. The diabetes has also caused benign tumors to develop in my breasts, and has damaged the nerves in my lower body.

For the last 22 months, I have been on a mind-numbing journey to find adequate health care, including a sufficient drug protocol to help alleviate my daily pain. I have also had to adjust to my new quality of life, and to accept the fact that I can no longer pursue my life’s calling.

I hope that you can use this blog site (as well as the book I am writing) as a resource. I will be using both the site and the book to document my life’s journey, and to share some of the life lessons I have learned from living in a diseased body. My poor health has motivated me to live the fullest life possible, but I have days (as I am sure that many physically disabled persons do) when I feel as if the medical system and my body have failed me. We all need an avenue to vent our frustrations, and to feel as if we are understood. I hope you will find that you can do those things here.

I look forward to hearing from some of you as to what struggles you have faced with your health and with the medical system in America. We all need emotional support from time to time, and I am confident that we can find that in one another. I wish you all good health, and a full, happy life!

Sincerely,

Kate