2021, The Year I Found My Heart

How do we identify who we are? I believe most of us have a mental hierarchy of the things that make us who we are. Our jobs, our passions, and what drives us. I have a sneaking suspicion that many of us are not living our most authentic, meaningful lives. The state of the world, especially amidst this global pandemic, has left so many people struggling, living day to day.

Not too long ago, I lived a fairly common life for a 30-year-old woman. I had a full time job, I had an apartment of my own, and a garden out front. I read books and spent time with my friends (virtually, as was safest for the circumstances of the state of the world). For the most part, I lived a sort of “normal,” yet delicately numb life. I had very little meaning attached to my existence. My work was the only contribution I was making to the world. And once I punched out at 5 o’clock, all of that “meaning” would flutter right out of my head. I believed myself to be happy. But even then, I felt a sort of hollow void in my chest. I knew, intuitively, that I could be more. I wish I could say I brought these unconscious thoughts to the surface, and did the work to be who I wanted to be. But instead, my body made this decision for me.

On August 5th, I had my first seizure. I had been dealing with some irritating problems for a few months. Nothing too alarming. I was having trouble sleeping. I developed a tremor. I had an appointment scheduled with my doctor to discuss these things. Neither Greg, my partner, nor I could have prepared for what followed. After having this seizure Greg brought me to our local ER. I was there for three days. I had an EEG, an MRI, a CAT scan, and a nurse in stained scrubs came into my room and took about fifteen vials of blood. I gave a urine sample. An exhausted neurologist came in and did a dispassionate and rushed exam, and proclaimed me healthy.

During my stay, I had seizure after seizure and got nearly no sleep. My only comforts were a stuffed horse we had brought, and Greg by my side. He often climbed into my narrow bed to soothe me, wipe my tears, and sing me to sleep. Eventually, we decided to leave the hospital, against medical advice. We agreed that being there was only increasing my building anxiety and insomnia. I had obediently participated in every test that was suggested. I tested negative for COVID, and had my vaccinations. There was no reason to stay. To this day, several months later, I have no diagnosis. I continue to suffer these symptoms. A side effect of the multiple seizures was that my right leg had simply stopped working. To this day, I can only twitch my thigh muscle, with extreme effort.

Once released from the hospital, armed with some generic information about epilepsy and insomnia, I contacted the HR department at the college that I worked for. We had been in loose contact throughout this episode, and I was promised that my health came first, and to give an update when I could. I called our representative, Tricia, expecting to be put on short term disability.

She asked me how I was, and I described the hospital stay, relayed that there was no diagnosis yet, but I was thankful to have a job. Medical insurance at this time was, obviously, extremely important. Tricia’s response was simply to tell me that the college had no choice but to separate, as she so bluntly put it. I was left with no severance, COBRA, and a simple “best of luck” from the institution I had worked so hard for. I instantly felt my life crash around my ears. I could not continue the conversation, and Tricia had to ask me several times if I understood, until I found my voice again. Stripped from my only source of income, I started to panic.

Around this same time, I was having issues with several of my friends, who were frustrated with my situation. One person, who I had thought of as a very close friend, told me that I was surely making all of this up for attention. A few others simply stopped talking to me. I realized, with an intense wave of grief, that my role in these people’s lives was to provide a homey atmosphere, home cooked meals, and all of the weed they wanted. My very best friend, Sarah, who I have known for almost 15 years, was one of the few that stuck by my side. She has been a godsend, my angel, my rock. Without her by my side, I do not know how I could have survived these past few months.

In a matter of hours, I had lost my job, my medical insurance, and several friends. I was left, stripped bare, faced with an unsolvable problem - how was I to live? How was I to pay my rent, my utilities, groceries, and pet supplies? I was facing this horrific panic, while mentally and physically dealing with this illness. Throughout it all, I was also experiencing an identity crisis. I did not recognize the face looking back at me in the mirror. I often felt as though my body was a separate entity from my mind. I began dissociating through each day. I was left without my friend group, my job, the uninhibited use of my body, and had very little social support. I was floating through the world, sucking up air and releasing nothing but anxiety and tension to all of those around me.

How had I gone from an employed, relatively happy, able bodied woman, with a full social life to a miserable lump of a person? Greg and I would often go out on weekends to hike or explore parks and walking trails. In the space of a few heartbeats, all of these identifiers had vanished. So what did I do? I spent a few days mourning who I used to be. I slowly learned how to navigate my apartment, and naturally found my boundaries - I could not, and still cannot, go up and down stairs without help. I did some very deep thinking, journaling, and talking with Sarah and Greg, and my brother Chris, my only family.

Finally, I wiped my tears and got to work. I had to relearn how to simply exist. I reached out to NYS and requested every available program for help. I exhausted every inch of my mind, trying to figure out how to make a living. It seemed utterly impossible. I was unable to leave my apartment, drive, or even keep a regular schedule - seizures had taken over my daily life. They were completely debilitating, happening at seemingly random times.

I closed my eyes, and let my mind lead me to a solution. I had always enjoyed writing, and suddenly it came to me - it was so obvious. I could write freelance! Sarah, also a part time freelancer, was an enormous source of guidance and wisdom while I started out.

With a flexible schedule, and jobs I could browse and apply for at my leisure, I felt I had overcome the most urgent of my battles. It took some time to find work, build up relationships with clients, and a lot of late nights writing, whenever I had the energy. I worked as hard as I could. I slowly built a portfolio, created scripts to speak with my clients and future clients, and learned to accept criticism with grace. I accepted every single job that I was offered. Many of them were days and days of work, with pay that came to just pennies per hour. It was, and is, painstaking work. But it filled me with purpose, and it gave me a reason to wake up in the morning.

As my income and savings shriveled, I conferred with my landlady. She blessedly agreed to work with me, accepting rent in installments throughout each month. I felt like I could breathe, and address the next, obvious, step. I had to compile a team of doctors and do as much research as I could to find out what could possibly be wrong with me. I spent many sleepless nights reading books and message boards online to find someone, anyone who had experienced anything like this. With no luck, I took to my pen again, and started a blog. It got some attention, and I was soon receiving messages from people who have had similar struggles. I had found my tribe.

For so long before this, I relied solely on Greg, Sarah, and Chris for social needs. And now, I have regained the deep, visceral need for people to connect to. We would commiserate together, sharing stories and leads on good doctors, new studies, new information. We often got very personal with each other. The thin veil of anonymity on the internet allowed myself, and my new friends, to speak freely, without fear of judgement. I listened to, absorbed, and cried with some of them. I shared my own worst fears and also my passions. A very kind woman learned of my love of houseplants, and contacted me, asking for my address, so she could send me something. I expected a card.

Instead, I was brought to tears to find a package of about a dozen clippings of various plants, all lovingly wrapped in damp paper. The beauty of giving had awakened something inside me. I knew I had to work harder. Despite all of my research, compliance with doctors, and acceptance of any and all work I could find, I was still extremely mentally drained. I was depressed, I was scared, I was afraid of losing the last few people who stuck by me. I had struggled with thoughts of ending my life. I was miserable, working myself to the bone for pennies, coming to terms with my seemingly permanent mobility issue. My relationship with Greg was suffering. He was doing his own research, and sent me studies and encouraged me to engage in self massage, mirror therapy, anything he could think of. None of these things resonated with me in the way that they should have. Bless his heart, he was, and is, doing his best. But he has his own job and social life. And as I tend to forget, no one, not even those closest to us, have unlimited spoons. Receiving that gift, from a generous person I met online, was the catalyst I needed, to wake myself up. I found the sheer generosity of humanity, and it drove me to put myself back together. I needed to learn how to be and find strength from within.

To this day, I do not have a diagnosis for my ailments, despite the work of my medical team. I have watched, helpless, as my entire life crumbled. Out of desperation, determination, and (fleeting) self love, I have managed to redefine who I am.

I took up yoga. Through my research, it was clear that I was in desperate need to reconnect to my body. I began painstakingly searching for instruction online for ways for me to enjoy the benefits of yoga without the use of my leg. As I practiced, I found myself learning so many invaluable coping mechanisms. I looked forward to my sessions, and scheduled myself to practice once in the morning, and once at night before bed. Many days I do much more than that. I could feel myself growing stronger. Being stuck inside, with very few ways to exercise safely, yoga did for me what I did not feel possible. I was reaching inside myself, and slowly closing the gap between mind, heart, and body. I learned breathing techniques and mindfulness. I found specific sequences of stretches and poses that I rely on when I feel especially panicked or stuck. Now, after several weeks of constant practice, I cannot imagine my life without yoga. Despite a lifelong battle with accepting and loving myself, I was learning to do it at my lowest time of my life. And best of all, I was given the opportunity, and allowed myself permission, to rebuild myself into a better me.

I write a journal, and carefully keep my files organized by month. I write an entry every single day. The effects that this has had on my mind have been indescribable. By taking the time to write every day, I found myself growing mentally tougher. I am so much better now at identifying what I am feeling, and why. I am thinking more clearly, despite the dozen or so medications I take daily. I am learning to take the time to take care of myself. In my old life, I worked my 9 to 5, and then spent my evenings zoning out, numbing myself with television, playing on my iPhone, and marijuana. Although I did not have the insight I have now to realize it, my life had nearly no meaning. Now, while struggling with this debilitating illness, I have found meaning. I rebuilt my life within a matter of months. I learned to earn income without a traditional job. I learned to reconnect with my body. I learned to reconnect with my mind. Through tragedy, I have clawed my way up and out.

Today, I lead a very different life, driven by my heart. I practice yoga and journal every single day. Whenever I can, I donate to my local food pantry, and to the womens’ shelter in my city. I have started, and continue to organize a virtual book club. We read as widely and as meaningfully as possible, and the conversations that have sprung from these texts often leave me breathless. My mind, previously numb, was hungry for information, for stimulation. I truly believe that this illness, whatever it is, has given me the greatest challenge of my life, a double edged sword. Through tragedy, I have found peace.

I continue to struggle every day with seizures and the lead weight that is my right leg. Whatever this is, if it takes me, I will go down howling, cursing, and fighting. God willing, as long as my body does not fail, I can be certain that following my heart and living my most authentic life will keep me safe.