I’m sitting on a beach lounger in Malibu. It’s a cloudy day, overcast and somewhat gloomy. I haven’t been outside in months, hardly counting the several seconds a day I exit my apartment to get into my car. I dig my feet into the sand, the texture of it between my toes, a feeling I can trace back to my toddler years.  Does sand absorb our feelings as well as the curve of our soles?

I’m wearing shorts old enough to be called vintage, beat-up flip-flops, and a large, oversized Notre Dame sweatshirt. The sweatshirt belonged to my grandfather, who passed away a little over a year ago. I wanted to wear it to the beach, where he was happiest.

I think about him at least once a day. He smelled like Dial soap and the musk of old books. I remember the cadence of his laugh, how he loved to whistle show tunes in the aisles of the grocery store, and his love for Breyer’s peach ice cream. He had been present for all of the significant milestones of my life, and I was positive he inspired my love for reading. But our similarities would only increase as I got older.

My grandfather was chronically ill for most of his life. He fell down a flight of stairs in Chicago at twenty-six and broke his back. He needed over a dozen back surgeries, but it would only lead to more pain. Despite suffering from chronic pain his whole life, he never used it as an excuse to lash out at us. I only remember him being kind, as quick with a joke as with a compliment.

I remember the first time I spoke with him about this pain. I was seven and sat in the kitchen with him and several siblings. I asked my brothers, “What was the worst injury you’ve ever had?” Michael talked about his bike accident, Jim mentioned a football tackle gone wrong, and I launched into too many details regarding the time the merry-go-round at school hit me in the jaw. My grandfather quietly added, “For me, it would have to be when I injured my back.” I remember feeling embarrassed for asking, thinking he would be annoyed by my tactless question.

I needn’t have worried; he rarely lashed out in anger. He described his whole world shifting after the fall and how it shaped the trajectory of his life and work. He was an associate professor of American History and would have to lie down on the floor of his office to get relief between classes. He taught for over 30 years and never once gave up.

I didn’t know it then, but our lives were about to take a similar path.

I was an athletic kid growing up. I loved pushing myself to my limit and enjoyed the camaraderie organized sports entailed. I was a gifted student, and loved to read and write. But so much of my development was arrested. I suffered from severe depression and anxiety as a child, and I did not know how to regulate myself emotionally. I became obsessed with getting as far away from home as possible. I loved my family and friends, but was desperate to prove myself.

When I was twelve, my dad took me to Barnes & Noble and started building my library. He bought me Jane Eyre, Great Expectations, The Iliad, and The Turn of the Screw. My father believed reading was the gateway to higher intellect and intelligence and assured me there would always be money for books. I took his words to heart, eager to impress him with my love of books.

When I started high school, I was determined to get good grades. I played basketball, painted, and participated in various clubs. I was an odd teenager, happier with my nose in a book and a quiet weekend alone than at parties. Not that I was invited to parties. I isolated myself as a teen, and knew if I earned good grades, my parents would be proud of me. Pursuing knowledge promised me the answers to all of life’s questions, and I was confident I could mold my future through rigorous study. My parents reinforced this idea, constantly instilling in us the importance of a college degree.

All my life, I have been told that becoming educated is the most critical aspect of a college degree. I didn’t know what I wanted to do with my life, but I would work hard to figure it out. I had plenty of time to settle down into a career. How naïve and silly I was to think this. When you’re young, the future always seems eons away.

I loved college. I finally felt like I belonged with my peers, no longer the awkward and shy girl I was in high school. I made a fantastic group of friends and became the captain of the Indiana University Women’s rugby team. I felt invincible, ready to take on the world upon graduation. But at the start of my senior year, I injured my hip while training during the offseason.

This was before “Obamacare,” and I didn’t have health insurance to get an MRI of my hip. I did my best to cope with the pain, icing and stretching the muscles, thinking I had strained it. Unfortunately, I had torn the cartilage and would not be able to fix it for six years.

After college, I worked as a nanny, a legal assistant, and an assistant controller. I wouldn’t say I liked all of these jobs. High school and college didn’t prepare me for confrontation, and I reacted poorly to managers or bosses lashing out verbally. School had taught me if I performed well, studied, aced my classes, I would do well. Even though I knew the real world was nothing like school, it didn’t sink in until I entered the workforce in 2010. I was used to authority figures operating under the guidelines and rules enforced by the American education system.

This meant I was rarely exposed to apoplectic rage. All of my teachers in high school were women, and my college professors seldom raised their voices. But in the real world, in the business world, so-called professionals do not always lead with respect. To make things worse, unfortunately, I graduated at the worst possible time for a millennial, right on the heels of the worst economic recession in U.S. history.

Working for men has always been hard for me. I have been terrified of them my entire life, afraid of their tempers and disappointment. I would freeze up whenever my bosses got angry, utterly petrified, and unable to move. I could not rationalize my fears away; I could not use logic or reason to convince myself everything would work out.

It got so bad I started collapsing and fainting at work. I had to quit my job as a legal assistant because the anxiety and fear I was stewing in made me sick. The doctors called it “psychosomatic fainting” or “vasovagal syncope.” It is defined as “a temporary loss of consciousness caused by emotional distress or physical triggers.” I hated how weak the diagnosis made me feel. Why couldn’t I be like everyone else?

The two years I spent working post-graduation were some of the hardest I have ever experienced. I was book smart, but I wasn’t street smart. I have always struggled with problem-solving, math being one of my weaker subjects, and I could not keep up with the stress. I hated my jobs, taken out of desperation for money and not for passion. I started researching graduate schools, intent on finding a career I was passionate about. Surely, graduate school would fix everything. I decided to pursue a career in film and television. I was convinced this would fill the hole inside me.

Graduate school was terrific. I moved to Los Angeles in my second year, and upon graduation, I had a job lined up at a production company in Culver City. I was 26 years old, had a master’s degree from a great school, and I was finally working towards my passions. I felt incredible and finally, FINALLY, on the right path. It was also the first time I had health insurance and benefits. After delaying treatment for five years, I decided it was time to get my hip correctly checked out.

After multiple tests and imaging scans, it was decided I needed surgery to repair torn cartilage in my hip. My first year in Los Angeles ended with that surgery; my future was bright and shiny. Little did I know it would all come crashing down. The surgery was technically a success. However, it triggered a rare neurological disorder known as Complex Regional Pain Syndrome.

The pain was overwhelming, and at times, it felt as if my right hip and leg were on fire. I ended up in the hospital a dozen or so times after my diagnosis, the pain a tsunami of agony barely held back by pain management. If my CRPS was a natural disaster, the treatments made available for “coping” with it were akin to “thoughts and prayers” by the government: they did nothing. Sometimes, I felt as if I was on fire, and to put out the flames, the doctors offered teaspoons of water. How could they not realize this wasn’t enough to calm the raging inferno inside my nervous system?

I spent the next seven years in agony, my career stalemated and put on the back burner. Luckily, I could work remotely, an option unheard of by most working professionals before 2020. In those seven years, I lived in survival mode. Any energy I had was committed to treating the pain. I slept with an ice machine next to my bed and a freezer full of ice packs at my feet. I did everything I could to distract myself from the pain. I wrote, exercised, and expressed myself through art.

I had fallen from grace at age 26, the same age my grandfather had fallen down a flight of stairs. Was I genetically destined to be just like him? Always in pain and held back by agony? I was determined to keep going; I WOULD be just like him. I promised myself I wouldn’t lash out at loved ones due to my pain. I would not use it as an excuse to mistreat anyone, and I would find a way to fix myself.

I finally returned to work in 2022, transitioning from film and television. Things were going well; I could finally drive my car consistently, and my life felt back on track. I work as an office manager for a marketing and branding company, and even though this is not my dream career, I am working again. After seven long years of agony, I finally felt as if I could move forward.

But things took a turn for the even worse. My psychiatrist died in August 2023, and the doctor who took over my care did not want me to take the meds I had been prescribed. I took a combination of antidepressants and an anxiety medication called clonazepam. He started tapering me down from the clonazepam, half a milligram at a time, from September 2023 until December 2023.

The period between September 2023 and March 2024 was some of the worst months of my life. I was riddled with anxiety, heart palpitations, severe sweating, loss of appetite, and intense body tremors. However, the physical side effects were nothing compared to the psychological ones. A voice deep inside my psyche constantly told me I was worthless and pathetic and that I was never going to be happy again.

The negative thoughts, depression, and severe anxiety made me feel like a stranger in my own body. I could not remember what it felt to be happy and content, and I looked forward to locking myself in my apartment each night. I was angry and frustrated all the time, and I developed agoraphobia.

I took a break from work and was put on medical leave in December after injuring my hip again. I stopped seeing friends, took an extended break from improv comedy (one of my joys in LA), and completely isolated myself from colleagues.

The agony of anxiety is the fear it instills. The break from work required I look deep within myself, an action I had not genuinely done since the onset of my diagnosis. I had been living in survival mode for so many years I had not done the psychological work required to let go.

Letting go and forgiving myself for all the years I spent in pain sounds simple. But it has taken me almost ten years to achieve. Through therapy and self-examination, I have learned the hardest of truths: no one will hate you more than you hate yourself. This is why we must love ourselves—love yourself like you would your own son or daughter.

I spent a decade in physical agony and seven months in psychological agony. Pain demands to be felt, and my body made sure I did. I will admit a dark secret. I would take the physical pain I experienced for the last ten years over the mental anguish any day. Physical pain, you can use your mind to overcome and endure. But when your mind and psyche are distressed, it doesn’t matter how informed you are: your brain chemistry can’t be rationalized. I would find myself immobile with dread and fear. A fear so potent it was as if a toxin was coursing through my veins, rendering me utterly still with terror.

I haven’t felt that kind of terror since I was a child. These episodes forced me to look inside my heart and mind. I had spent seven years running from the pain, hating myself for being fragile and hurt, for needing so much and so often, because I had never found the reason why I had this disease.

Up until this point, I assumed I developed CRPS because of bad luck. CRPS isn’t genetic, but how I experience my pain is. According to the National Library of Medicine, “studies have shown that genetics can account for up to 50% of the variance of chronic pain. People who are more closely related are also more likely to have similar pain perceptions” (James, Sabu “Human Pain and Genetics: Some Basics”.)

This means my grandfather’s pain, the way he suffered from chronic nerve pain, passed on to me. We did not have the same physical ailments, but how did our nervous systems react? We were nearly identical. This realization overwhelmed me and ultimately allowed me to heal. The initial injury was not my fault. The pain was not my fault. It. Was. Not. My. Fault.

This was a crucial step in my mental recovery. Forgiving my body and mind allowed me to get the rest I needed and accept where I am in my life. I don’t know what the future holds for me or where my career is heading. But I am still fighting and showing up every day, and that is enough.

I stare at the ocean before me, the saltwater breeze carrying the sounds of children laughing by the surf. I finished writing this in my journal and finally checked my phone. My friends have made it to Malibu and have texted asking where I am sitting. I smile as I text back, the siphoning of these words a desperately needed catharsis.

I lost my grandfather last year, and I lost myself this year. But I still have him in my memories, in the shared collective of grief and love between family members. And I have me, my health, and my present. I cannot change the past, but the future is constantly in flux.

I stand up from my chair and begin trekking down the sand in search of my friends.

Life is good.

Citations:

James, Sabu. “Human Pain and Genetics: Some Basics.” 13 Nov; 7(4): 171-178. http://www.ncbi.nlm.nih.gov