On My Nerves

I can feel my leg burning as I slowly wake. My head is resting on my boyfriend’s chest. Fire blooms inside my right hip and thigh and spreads down my calf. I am desperate to put it out, but something blocks my attempts. There is heavy pressure on my right hip, fanning the flames and igniting my nerves into an inferno of pain. I am still half asleep as I reach for the troubling mass leaning against my leg.

It is my cat.

I nudge her away and grab my leg, agony pulsating through my long shapely leg. To everyone around me, on the outside, I am a beautiful woman - a girl who could have been “a model.” Oh that sweet irony burns deep inside, the ugliness of disease and atrophy preventing me from being able to walk properly for the first three years of this horror show. A model? Please, I am more like Dr. Jekyll and Mr. Hyde, dual personas that take over. But my "Mr. Hyde" is a fire demon unleashed when the pain becomes so intense I require a bathtub of ice to quench the flames.

I have a rare neurological disorder known as Complex Regional Pain Syndrome (CRPS). It was discovered during the civil war, but 99% of doctors today have never heard of it. It is a pain disorder. Patients develop it after an accident, trauma, surgery, etc. Typically a few weeks after the accident, their nerves betray them into thinking the trauma they experienced never ended. Their nerves tell their brain that their limb or body part (or their entire body) is mortally wounded and in extreme pain. Pain signals are sent to the affected area, warning the patient 24/7 of this “catastrophic injury” long after the original injury or surgery has healed. According to McGill University’s pain scale, it is the most painful disorder on the planet, beating amputation of a digit and non-terminal cancer.

How I developed CRPS is very interesting. Most people twist an ankle, fall down, or they were in a car accident. For me, I had hip surgery to repair torn cartilage after a career in college rugby. The pain started almost immediately. It took six months to diagnose (most patients endure a decade or more for a diagnosis, but I was very lucky) and I was able to start treatments. I received ketamine infusions for a year and a half. I also had IVIG infusions. And I tried a cocktail of different medications. But no matter what I tried, my right leg and hip were still 4 cm larger than my left. The swelling and inflammation was agony.

When people ask me to describe the pain, I tell them to imagine barbed wire tightly wrapped around their leg. Then imagine soaking kerosene onto their leg and setting it on fire. Finally, imagine sitting in a hospital, begging for help and pointing at your fiery leg, and doctors saying to you - “Sorry, there is nothing we can do.” And even as the flames consume you, and you dissipate into ash, your one thought will be, “How can they not see what I see?”

But there are things that I myself can do. I have become an advocate for those with this disease. And I was a writer for a publication dealing with chronic illnesses and big pharma for over four years (The National Pain Report). And there are personal goals I can take on myself. My New Year’s Resolutions for 2021 are quite different from most people’s I would imagine.

It has been 6 years since my surgery. I have progressed since my diagnosis. But I need to do more. I need to believe in myself again. I have lost hope and faith in my abilities to chase after my dreams, because they were railroaded by a terrible disease and I let myself get flattened and I stayed on the ground. I have been slowly picking myself back up, but I need to start moving forward. I will be rougher around the edges, I will be damaged, but I have to find a way to survive in this world.

But even survival is not enough. As a new year approaches, we all start thinking about our “resolutions.” The celebration of New Year's has always seemed depressing to me. We never finish everything we attempted to accomplish in time, we obsess over the mistakes and mishaps we have endured or failed to correct. Or we reminisce about the "mistakes" we gladly followed down the rabbit hole. But though we wish we were Alice, we are not special, nor are we unique in stopping the inevitable: our lives catch up to us. New Year's approaches to remind us where we failed or how we succeeded.

I have never been one to have resolutions. Human beings are creatures of habit, and rarely change who they are. Instead, I make a list of goals. Do not mistake them for the same thing: resolutions almost always include changing your inner and outer self for the benefit of those around you, shrouded in a sense of "I am doing this to better myself." But are you? Are you bettering yourself for you or for society? Or is it for the Facebook likes and the Instagram hearts? For the attention and the gratification? Or are you really doing it to become the person you want to be?

Social Media has ransacked our holidays and taken the meaning out of so many of them. I have had to make so many things private, like planting my own secret garden, tending to it and hoping my flowers, my goals, will bloom. The glare of social media attention could burn my precious work, but could my goals die in darkness? Just how much light do I let in? Should I be more open with others? The darkest secrets I have inside of me, the ones I must bring to light, are “Can I ever live a full life again?” and most terrifying of all “What if I fail?”

These two questions haunt my thoughts like a spectral vortex trapped inside my body, paralyzing my insides and consuming so much of my soul, I have become agoraphobic and trapped in a narrative I have to write myself out of right here. A narrative where I am always in bed, convinced I will never succeed at anything. But 2021 is different. I have found the man I am going to marry, and he accepts every part of me. His love emboldens me and makes me believe I can succeed. His love has resuscitated my heart, and despite the pandemic I am living again, and he has encouraged me to try and overcome the obstacles in my life. Thus, the engine of my life has been kickstarted - now I have to get the rest of me sorted.

This brings me to resolution or goal #1: Make strides to do more at work. I work for an up-and-coming production company in Los Angeles, and I read all of the scripts that come in and provide coverage and notes for each potential project. Coverage consists of a summary of the script and then more specific critiques. These include: Is this well written? How are the characterizations? What is the scope of the project? What is the time period? What is the budget? Would this attract talent? Does the dialogue flow? How is the exposition? Producers count on script coverage because it saves them time from having to read the entire script, and they figure out very quickly if the project is a cherry or a bomb. Now, I have been severely depressed and have allowed myself to get behind in my work, the pain being my excuse. No longer: I emailed my boss today and told him I am ready for more scripts and once I am vaccinated, I will be returning full time (he informed me that no one is at the office currently but it was important for me to take that step). I need to return to my job and step outside my apartment. If I can get back to work, I can rebuild my life.

Resolution / goal number two: I want to move out of my apartment by August 2021, and live with my boyfriend. For the entirety of my disease, I have lived with my two roommates. I have also lived in the same apartment. In my dependency, I feel like Miss Havisham of Great Expectations, haunting my own rooms, unable to let go of the past and living in a haze of pain. My roommates are incredible, but it is time for me to free myself from the confines of what is safe and easy - and instead take a leap.

But this is more than just a leap into a new home, this is a chance to start a new life with the man I love. The ultimate test of a relationship is living with someone, and I have never lived with a significant other before. I must admit, I am terrified. But not for the reasons you might think. I am afraid of being a burden, of having him take care of me, of always being the weakest link in the relationship, but most of all I am terrified of financial hardship related to my illness. Can we provide for each other? These issues cannot be predicted or rushed, hence the “leap” as they say, but I believe that we have the foundation necessary for what is to come. We have love, respect, communication, and we both have mutual desires to work hard.

He is also the kindest, sweetest, most forgiving man I have ever met. He disproves the theory that Angelenos are unkind and standoffish. But like me, he is not originally from Los Angeles. We met because he was my Lyft driver. I could not drive myself to a party I was going to and ordered myself a lyft, and we had such a wonderful conversation that we ended up exchanging phone numbers and went on a date. The rest is history. And despite all the pain I have suffered, the misery and all the hospitalizations, I would never trade or wish my disorder never happened. It would mean he and I never would have met.

This is my New Year’s Revelation: the pain I have felt for 6 years, so severe and at times like my very atoms were being burned to a crisp - it has all been worth it for the love of my life. Love is always worth it. Love is the balm for any pain or aches we have in our or on our body. It can heal anything if we let it. Tomorrow, February 2nd is my birthday, and my boyfriend said he has a surprise for me that I must “decide” if I want. I think that is quite obvious as to what this gift is.

I am going to say yes. I am going to build my life again, with him by my side.