I Am Still Here.

Hi, all. It has been a while. Bear with me – we have a lot to catch up on.

My last post, "I'm Not Okay," was written just a few short weeks before the pandemic started in 2020 and my home state of California was put into lockdown. Since that time, I have thought over and over about writing again. But every time I tried, I was stuck. Blocked. And not just the typical writer's block we are all familiar with -- I felt frozen in place, unable to move, not knowing when or if I was ever going to come out of a seemingly endless hole that I fear has still not reached rock bottom. What was I supposed to write about? "I'm Not Okay... Still?" I did not want to admit that. I wanted to have something to write about that lent itself to positivity, which I have had a shortage of for a long time.

If you know anything at all about me, you know that the one thing I refuse to do (okay, I'm pretty stubborn, so maybe not the only one) is represent myself to be anything but who and what I am. I believe in telling the truth, not sugar coating things to make others comfortable at the expense of my own authenticity. This has kept me quiet to my detriment. It has left me alone and isolated, not just as a widowed woman living by myself which has rendered me virtually a recluse for over a year and-a-half, but because I constantly feel like the weight I carry should not be shared with anyone. It seems unfair.

Instead of pursuing my passion for writing and delving into the deeply honest and painful experiences that have been happening since the first COVID lockdown, I have retreated deeper inside, distancing myself from but a few people in my life. Worse still, others who meant a great deal to me distanced themselves from me, without conversation or true understanding, leaving me to grieve the loss of those important relationships. It has not felt safe to talk about. I do not want to be judged. I do not want to have my character questioned. I have worked hard for many years to disregard what others think of me, but here’s the truth: it is me who is doing the judging and questioning. But I know that so long as I continue to draw further away from humanity, the less of a chance I have to become the woman I am meant to be. Staying silent for fear of speaking my truth has not worked. I also know that refusing to accept help and support from those willing to give it can be fatal. So here goes.

I was struck recently by something I heard in one of the virtual fitness classes I take every week. One of the instructors asked, "Do you remember when you prayed for exactly what you have right now?" It stopped me cold. (Well, once I was done with the class, because Lord knows I am not going to stop once I've started.) I do remember when I prayed for what I have right now. When I gave up what felt like not just a job but the career I had been working for and humbled myself by moving back home with my parents four years ago, all I wanted was a home to call my own and some space to heal. I did not care about having a prestigious position, magically pulling myself out from under the crushing weight of student loan debt, or even knowing what the next day might bring. I walked out of that dark space with conviction that somehow, some way I would land on my feet again. It was terrifying, but the relief of letting go of control over the outcome was also the most liberating thing I could have done. I was so proud to have taken those critical steps.

Slowly but surely, I did start to heal. I spent time in silent meditation and reflection on a daily basis. I paid attention to the signs the Universe was sending me, regardless of where they might lead. I trusted that I was not in control of my destiny, or wherever I was heading. In short, I was living my life with faith that no matter what, I would be provided with what I needed. No. Matter. What.

That faith led me to a job that, while it was not saving the world or fighting for social justice, provided me with the means to move back out on my own. It was an easy enough job, and I was able to see that I did not have to burn myself to the ground to prove anything to anyone, because I was confident in my skills and abilities. Was it what I wanted to do? No. But the job did not have a billable hour requirement. A legal job without billable hours?! This was unheard of up until this point in my career. Sure, the subject area did not ignite the passion I craved to motivate me. But my boss was nice, the hours were reasonable, and it gave me time to have a life outside the four corners of my office. At the time, it made total sense. It was what I had prayed for.

I started to open up and trust that I was capable of true connections with other human beings. I built friendships, had a brief and wildly unsuccessful stint in the dating world, and found hobbies that helped me to feel something. I felt empty at work, but I hoped that the something I felt in those relationships and activities would be enough to overcome that dark morass that was ever-present and growing in my soul, which came from the knowledge that I was not doing what I was meant to do. I pushed that aside and stayed busy. I ignored the gnawing in my gut and told myself I should just be grateful for what I had. Nobody likes their job anyway, right?

Then COVID happened. When the pandemic hit and I transitioned to working from home, I lost access to most of the things outside of work that made the work itself tolerable. The cycling studio where I taught classes and the martial arts gym where I did Muay Thai were forced to close their doors. My annual trip to Washington DC to advocate on behalf of the brain tumor community, which I counted on to give me the shot of life I needed to propel me forward every year, was cancelled. Each of these losses felt painful, but I was sure that it would all be over soon.

Sigh. We all know how that turned out.

Without a doubt, I was grateful to have had a job that gave me the opportunity to keep working and stay at home. This was important because for several years preceding the pandemic, I struggled with severe chronic pain and migraines, along with the challenging mental health issues I have discussed in prior posts. When the world shut down, I learned that I was “immunocompromised” from the immunosuppressant medications I take to combat my ever-progressing autoimmune disease, and that I needed to take extra precautions to prevent getting COVID. This meant that aside from my “COVID pod” of about three people whom I knew were taking the virus seriously and my family, I was no longer seeing anyone, except my pharmacist.

With the myriad of issues described above, it did not take long before I began to deteriorate. In spite of my efforts to remain engaged with the world, the longer the pandemic went on, the worse my physical and mental health became. I was in so much pain every day that I would spend hours lying on the floor next to my desk, sometimes trying to read my files and keep working but often being unable to due to my extreme sensitivity to light and sound. I had been diagnosed with a rare headache disorder called hemicrania continua (HC), which literally means “one-sided continuous headache,” a few years prior, so I am not exaggerating when I say I have had a headache for five years. (It is not a "just take a Tylenol" kind of headache. It starts like an ice pick in the back of the skull and gets worse from there, and causes a wide array of other symptoms and neurological problems.) Many days each week these headaches developed into full-blown migraines where I would have to stay in bed with the blinds drawn, forcing crackers and ginger ale into my nauseated stomach to keep my body alive. The range of motion in my neck, which I had been having problems with for years, worsened to the point of being unable to turn my head to the left. Flares of both my autoimmune disease (axial spondyloarthritis (AS), an inflammatory arthritis of the spine) and HC were occurring so often I was having no good days, pain-wise.

The loneliness of isolation, intractable pain and discomfort, and insomnia which to this day gives me an average of four hours of sleep per night began taking a severe toll on my mental health. I fell into a deep depression, as bad as it had been after my husband Patrick died. I was full of anxiety over my health issues and how difficult it was making it to get my work done, though for a time I was able to manage by working at odd hours of the night and on weekends when I would have enough stamina to sit in front of the computer for more than a few minutes at a time. I finally reached a place of total apathy with absolutely no care whether I lived or died, and that is when it hit me like a ton of bricks: I was afraid of my own mind. Again. It was not the profound sadness or panic that frightened me, as they had become some of my closest companions over the years. It was the fact that nothing mattered anymore. That is when real concern arises for me because I do not know how far I would be willing to run with those thoughts. That is the kind of mindset that could lead someone like me to a permanent solution for a temporary problem.

A number of doctors, specialists, and mental health experts attempted various interventions to try and manage my chronic pain and increasingly troubled mind. I had a dozen epidural and trigger point injections in my neck and back. I had Botox in my scalp, neck and shoulder to try manage the headaches, as it is supposed to block neurotransmitters that carry pain signals from the brain. MRI after MRI on my neck and back showed progressive worsening. I cannot count the number of medications that were tried, rendering me a full-fledged science experiment. Nothing was working, and working was becoming impossible. I was forced to go on short-term disability for what I was hoping would be a brief period to “get it together.”

The medical treatments continued, including surgery to have artificial disc replacement at two levels in my neck. More challenging than recovering from my second spinal surgery, however, was and continues to be working on my mental health, the necessity of which was confirmed when my “COVID pod” decided I was no longer a welcome member and any reason to leave the house all but disappeared. In a previous post, I talked about EMDR (Eye Movement Desensitization and Reprocessing), a type of psychotherapy that is designed to alleviate the distress associated with traumatic memories. I have continued this diligently with my therapist who specializes in complex PTSD once, sometimes twice, a week. It is frightening, heart-wrenching, and physically exhausting. I wear a fitness tracker on my wrist which records basic vital signs and shows that when I am “in” a memory we are trying to reprocess, my heart rate jumps to between 190 and 200 beats per minute, all while sitting in an armchair. The physical strain is often more difficult than a 60-minute cycling class. None of this is helped by the ongoing trauma inflicted by the medical system itself which I spend hours each week dealing with, simply trying to get the treatment my clinicians recommend and are supported as medically necessary. Attending to my health is more than a full-time job, but I do not get to bill any clients for my hours. Instead, my bills keep coming, and each minute spent fighting for my care takes a little more of my soul.

As of this writing, nearing a year after my “temporary” break, I have not been able to go back to work. I cannot tell you the amount of guilt and shame I have surrounding what feels like abject failure to live up to what I “should” be. I have realized that this is the real reason I have not been writing. I am embarrassed to watch my peers live their lives, raise their children, run their businesses and take vacations while I sit on my couch, with too much brain fog from the combination of chronic pain and medication side effects to even attempt to read a book. Do not even get me started on the financial toxicity of chronic illness and the interplay with my self-esteem. But I submit to you that this year, while not earning a paycheck and being forced into submission by my body and mind, I have never worked harder in my life. Sitting with my feelings; facing and reliving the most traumatic moments I have ever experienced; suffering frequent panic attacks and flashbacks as I comb through the realms of my trauma-ridden mind; uncovering the terrible beliefs about myself that became so deeply imprinted at such a young age that they have informed almost every decision I have made; unremitting physical challenges from chronic illness which I struggle to accept every day, often at my own expense by overexerting myself in a feeble attempt to prove that I am not as limited as I am; all of these things have been far more arduous and agonizing than studying for the Bar exam, or working in any of the less-than-satisfying jobs with insane billable hour requirements that have comprised my entire legal career.

I used to joke that I always felt like an alien in a room full of lawyers, drowning in suits and pearls that made me feel like I was playing dress up. This was not because of imposter syndrome, i.e. an inability to realistically assess my skills and thinking that I was somehow not smart enough to be among them; fortunately, the work I have done over the years has given me confidence in my capabilities as an attorney. What it really meant was that I always felt so different from the rest of them. And this was not limited to other lawyers - it applied in all areas of my life. It is difficult to figure out how to live in this world when I do not feel like I'm of this world. I have never felt like I fit. Square peg, meet round hole. (I’m peg.)

When I look at my current state of affairs, I have to remind myself that this gut-wrenching soul work is what most people do not dare look at. Our culture teaches us to “suck it up,” “tough it out,” and other maddening ways of telling us to shove the painful stuff down deep where we cannot see it and carry on, business as usual. The refrain that has been running through my mind for as long as I can remember -- "What is wrong with me?" -- has played on endless repeat because I simply cannot do what society says I must, namely pretending everything is okay when I am dying inside.

I know the narrative that runs my twisted thinking needs to be changed. It starts with asking what is right with me, not what is wrong with me. I am learning that my willingness to bare my soul, dissect the ugliness, and dismantle the lies I have been telling myself my whole life does not make me weak. Being deeply moved by life and all its complexities does not make me fragile and powerless. Healing personal and generational trauma at the expense of my own comfort and ease is not something tasked to those unequipped to survive what often feels like an unyielding barrage of assaults.

Since Patrick got sick more than seven years ago, I have frequently said I do not believe the saying “the Universe never gives us more than we can handle,” because it has felt like I have had much more than my share for a really long time. But I must concede that, in spite of it all, I am still standing. When I fall, sometimes I need to lay down for a while, but I always get back up even if it takes longer than I would like and feels like I'm being dragged by my ponytail. I have not resigned myself to my current quality of life because I know I deserve better. I know from the deepest place inside of me that my life experiences, my passion, my education, and my talents are not going to end up wasting away on a couch, serving no purpose other than my own misery. I do not know what it looks like or how I will get there, but I know I am going to be able to help people on a bigger scale than I can contemplate now. What that tells me is that I am not doing life wrong. In fact, I think I just might be the one doing it right.

I am still trying. And I am still here.