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.