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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