Life Unfinished

By: Katherine Itacy, Esq.

Dated: March 20, 2018

At this time, one week from now, I should be lying completely flat in my hospital bed, starting to recover from my second tethered cord release/laminectomy/complex lipoma removal neurosurgery. That’s if all goes well.

This surgery comes exactly thirty years (down to the month) after my initial neurosurgery. And with each passing day, I am more and more grateful that I remember very little from the initial surgery. Thank heavens for a four-year old’s limited memory retention!

In my continued pursuit of full disclosure and an authentic voice, I thought you should know: I’m scared shitless.

As most of you already know, I’m a bit of a surgery veteran at this point in my life. I’ve undergone well over forty different surgeries and procedures so far, and the majority of those occurred within the last decade. I’m not new to anesthesia or to operating rooms. I’m also relatively accustomed to high levels of pain.

I’m not scared of needles or IVs (I mean, come on: I’m a thirty-year Type I Diabetic!), I have no problem being in a hospital and I have complete confidence in my neurosurgeon.

But I’m scared shitless.

I just have this strong sense that I may not wake up from the procedure; at least, not in the same state of mind and soul. And I’m almost creepily calm about the possibility. I have all of my advanced care directives in place, ready for the hospital staff to receive and review. My family and close friends know what I would like to have happen if I pass (donations in lieu of flowers; body donated to Brown Medical School for cadaver study, followed by cremation and destruction of the remains; a fun, upbeat party instead of any sort of funeral or wake, etc.). And because I am very open and direct with others about how much I care about/love/appreciate them, it’s not really so much about not having closure with my loved ones, should I expire.

I’m a pretty practical and prepared person (how’s that for alliteration?!), so I have a lot of the paperwork and legal contingencies already in place. The statistical probability/possibility of my untimely death is totally understandable to me.

In all honesty, what’s bothering me the most is that I haven’t finished my life’s purpose yet.

My social/civic activism and criminal defense career (both of which I saw as my collective calling in life) were shut down so quickly, so dramatically and so completely since my spinal cord started re-tethering over two years ago. I’ve been working so hard to make peace with that reality, and with the fact that I may never use my legal mind ever again. But through this process, I felt the strong pull towards writing a memoir about my life’s success and struggles, particularly dealing with a diseased body. I’ve now written 210 pages of that memoir, and have begun to start the editing and peer-review process. Sadly, there’s no way it’s going to be finished within the next week, and that really frightens me.

What if I poured my heart and soul into this project, only to leave it unfinished and unread because my body finally got the best of me?

Thankfully, I have a wonderful and talented friend who has agreed to take over the project and submit it for publication if I pass or become incapacitated, and that’s a huge relief. The thing is, in the end, it still wouldn’t be one hundred percent my voice and my vision.

I’m not so self-absorbed that I think I’m the only person who’s ever felt the need to pass on their little gems of wisdom or insight into life’s fragility and unfairness. It’s just that I would never be okay with leaving this world without doing more for its betterment. I haven’t done enough. Frankly, I’ll have never done enough, but come on – ten years of activism and indigent defense cannot be my entire legacy.

If only I believed in an afterlife, my ghost would be stuck in limbo, in perpetuity, for all of my unfinished work.

Alas, I don’t, so you’re all probably safe from seeing my spirit hanging around.

And hopefully, my fears over next week’s surgery will all be for naught in the end.

But just in case, please know that I’ll be leaving this world (or my conscious mind) with these wishes and intentions:

For every single person to find warmth, comfort, love and passion; for everyone to live in good health, with pure hearts and compassionate souls, living to make their lives and the lives of those around them better; for everyone’s life to count for something substantial, and for each person’s life to have less pain, no hunger, a sense of peace and a clear and positive place in this world.

Each one of you matters, and each one of you deserves better. The world deserves better. Be better.

All my love,

Kate

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The Importance of Finding People Who “Get It”

By: Katherine Itacy, Esq.

Dated: March 4, 2018

It’s been a long, long journey since I started feeling the symptoms of my spinal disorder in December of 2015. Since then, I’ve retired from my job (today, actually), gone through a number of painful medical procedures and nauseating pain meds, lost a good deal of mobility and had to adjust to a new “quality” of life. It’s made me feel sad, defeated, depressed and downright incensed.

I’m not a person who easily asks for help or admits defeat. I’m not someone who gives up easily or just accepts her circumstances. I fight. I persevere. I persist.

I made it through neurosurgery at the age of four and relearning how to walk. I’ve made it through thirty years of Type I brittle diabetes. I’ve made it through an eating disorder I created from withholding insulin from myself. I made it through a toxic first marriage and an even more toxic divorce. I’ve made it through dozens of surgeries, all of which occurred while running a successful law practice.

But over the last decade or so, I’ve had to start accepting my physical limitations and the consequences that stem from mistreating my mind, body and soul. My idea of what I’m capable of enduring and achieving in this life has changed; it had to. And that royally pisses me off.

While we were still living in Del Rio, Texas, I realized just how angry I was; not so much at any of the doctors that had demonstrated such horrific bedside manner; not at my poor husband, who was simply trying to keep positive and believe that we would find something, anything, that would help alleviate some of my daily pain.

I was angry at myself, at my shit body. Was it not enough that my diabetes was already waging war against my nerves, my hands, my eyes and my breasts? Was it not enough that I face a huge risk of going blind, having a heart attack, suffering from kidney failure and/or having a limb amputated in the future? Was it not enough that I’d been born with Spina Bifida Occulta and a huge lipoma across my entire back? And that the damn lipoma had wrapped around my spinal cord at the age of four and started pulling on it so tightly that the cord was ready to snap? Now, 28 years after having 90% of the lipoma removed, there was something else happening with my spine?

I now had to wake up each day (and in the middle of many nights) in debilitating pain? Be unable to sit, stand or walk for any ‘normal’ period of time? Endure persistent (inexplicable) muscle spasms all over my body? Pain shooting down my sacral area (i.e., ass), legs and feet? Be so tired that I sleep for 21 out of 24 hours or 30 out of 36 hours, leaving me to question whether I’d fallen into a warped version of a Disney movie and in need of a prince to come kiss me awake? Be unable to use my legal mind, which I’d spent years crafting and refining; which enabled me to perform (what I thought was) my calling in life?

I’m lucky. I have wonderfully supportive family and friends. But not a one could fully understand what I was going through; not a one could seem to counsel me through the rage I was feeling towards my own vessel in life.

I’d only tried counseling once before, and that was when I came to the realization that I needed to get a divorce. That thirteen-year relationship had shattered the person I once was, and I needed help putting her back together. It took a while, but it worked, and I finished counseling stronger than ever before.

But as I sought explanations and treatment for my plethora of symptoms from this (then-) unknown spinal disorder, I realized that I needed help once more. And maybe, more than anything, I needed to find a group of people who could really understand my feelings. I vowed to myself and my husband that as soon as we made it to Detroit (our next destination), I would try to find a support group to join.

My plan had to be adjusted after it became clear that we wouldn’t get to Detroit for a while. There were delays in the application process; then a natural disaster and a government shutdown delayed my husband’s training academy. I came back to Rhode Island last June to stay with my parents while Yvens finished up this job change and training. I’m so thankful that I’ve been able to receive outstanding medical care here while I wait.

But the anger resurged. So my primary care physician referred me to a counselor who focused on helping patients adjust to their disabilities. It’s been so constructive to let some of the steam out of the pot, and it’s been really helpful to have my feelings be validated by someone who hears even more tragic and dire stories than mine on a regular basis.

Still, my counselor supported me finding a support group so that I could share my story and hear similar stories from others in comparable conditions.

As I was searching for a chronic pain support group in Rhode Island, I got news that I’d been misdiagnosed for the last 2+ years. What was actually happening to me was a recurrence of my spinal cord being pulled. Yup, I have tethered spinal cord (“TC”) again. Twenty-eight years after it first tethered.

My dad figured I was one of the rarest medical patients to ever live. He always thought my getting TC to begin with was such an uncommon thing. But my new (and totally awesome!) neurosurgeon assured me that I was not alone in having TC once again. In fact, she’d recently released a tethered cord for a patient who went forty years in between his first and second TC!!

The day after I received my recurring TC diagnosis, I took a shot in the dark and tried to see whether a “tethered cord” support group existed on the World Wide Web. Guess what: I does! On Facebook! So I joined the group and took another shot in the dark; I asked its members whether anyone else had recurring TC. Take another guess: several had! And while some of their stories were a bit bleak (e.g., one woman has had FOUR TC release surgeries in the last fifteen years, and anticipates needing more in the future!!!!), just knowing that there were others like me out there was so sadly comforting.

Of course, I hated that anyone had to endure a tethered cord. It can paralyze you, and often messes with your bowel and bladder functioning (as it has with mine), on top of many other things. And up until a few weeks ago, I didn’t even know that what I had was recurring TC. But it’s been so helpful to be part of a community (albeit, an online community, which, up until this point, I hadn’t been the biggest fan of or participant in) where people just get it.

I’d forgotten just how important it is to find and surround yourself with people who get it; who get you. And it doesn’t have to be all of you; I’m not sure I could ever find anyone (other than myself) who has experienced and felt every single thing I’ve experienced and felt. But in times of stress or pain or loneliness or anger or sadness, it’s essential that you be able to confide in, vent to or simply be with another person who understands; who will know just what to say and what not to say; who can tell you, with authority, what has at least worked for them in the past when they felt the way you’re feeling. It can make all the difference in the world.

And I’d encourage you to be that person for someone else when they need help. Remember how helpful friends, family and even near strangers have been to you in the past when you needed a helping hand or a listening ear.

It’s like this past week, when a good friend called to thank me and my BFF Nikki for our most recent podcast episode, where Nikki and I had discussed self-care and self-love. My friend called to say that she had recently ended a toxic relationship, and had really identified with our mention of ending toxic relationships in your life as part of your own self-care and self-love.

Simply hearing that our podcast struck a cord with another person made me feel incredible! Did I discover the cure for cancer? Nope. But maybe I’d reaffirmed for my friend the validity of her decision to end the relationship. Who knows? Maybe it’ll encourage another listener to do the same with an unhealthy relationship in his or her life. Not that I’m out here trying to break people up; it’s just that Nikki and I wanted to share our discussions and our experiences with others in order to make people’s lives better. We wanted to connect with people, and let listeners know that they’re not alone. We want them to know we get it.

Knowing we’ve done that for even one person out there is pretty indescribable. It’s one of the best and most basic parts of being human; it’s the shared human experience.

Be that for others, and know there are others that will be that for you. Not a single one of us is completely alone.

Get it? 😉

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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.