Ten Years

This is not how I pictured it.
 
Ten years ago today, Patrick suffered the first of many seizures that led to his diagnosis with glioblastoma, which would ultimately end his life just ten months later. I have written about the experience of being his care partner extensively. I have worked in grief counseling to process the trauma. I have been ceaseless in my pursuit of uncovering and discovering who I am underneath all the layers of meaningless noise that the world spends so much energy and money to convince us are important.
 
I spent years of my life hardened to the world and everyone in it. I was angry, because anger lives in many parts of my younger self that I used to survive as I grew up and began experiencing the challenges that have come my way. That anger, I now know, is not out to make me miserable – while that might at times be the result, its presence is in fact trying to protect me from the pain of being a deeply sensitive and feeling person in an often cold and unforgiving world. That pain is what I was trying to avoid when I suffered with a severe eating disorder as a teenager. That pain drove me to years of alcohol and drug abuse that nearly cost me everything. Even just the fear of that pain has stolen countless moments of beauty, of connection, and of hope. It has often rendered me frozen in time, unable to move forward, paralyzed in a fraught nervous system that weakens my resolve and leaves me incapacitated. And many, many times it has almost convinced me that life would never get better and the world did not need me anymore; that my suffering would not end unless I took permanent action to assure it would.
 
But in spite of myself, no how matter how dark and lonely it has been, a shred of light always remained just visible enough to keep me here.
 
If I am being honest – and, who am I kidding, I am not really capable of being anything else at this point – some of the most intense anger I have felt over the years has been at that tiny glimmer that refuses to dim, telling me that life will not always be so bleak. I cannot speak to the tragedies that anyone else who might read this has been through, nor will I try to. But I can tell you that ten years – a quarter of my life – have been spent in more physical distress and spiritual crisis than I would anticipate one could survive. Countless doctors, diagnoses and treatments, which have often left me with more questions than answers, drove me into financial and emotional bankruptcy. A career that once defined me had to be torn from my clutches, leaving my hands bloodied and marred from the death grip I used to try to maintain some semblance of control. That career was something I once clung to in order to convince the world, but mainly myself, that I was worth something. Without it, I had no idea how to interact with people around me who asked questions about my life. I constantly felt the need to justify my existence, because we are conditioned from the time we are very small to believe that our value comes from productivity, from money, from whatever you “have to show for yourself.”
 
I am not exaggerating when I say that since that fateful night ten years ago, my life has consisted of one chaotic event after the next. It has been lonely. I have felt isolated. Misunderstood. Disconnected. I am not recounting any of this to garner sympathy; instead, it is simply an accurate assessment of what this decade has been like. So, maybe it makes a little more sense now why I have regularly felt vitriol towards that tiny sliver of hope that has not allowed me to finally throw my hands up, to relent, and to say “Thanks, world, but I have had enough.” It was never about wanting to die. It was always about wanting the pain to stop.
 
I knew at a visceral level that someday I would begin to feel a shift. It started, as it always does, deep within my soul. I stopped trying to impress people, period. Now, do not think that this came simply out of virtue; quite the opposite, it came about because I lost all of the things that we typically use to assess value like money, property, relationships, or even health. It was not until I no longer had those things that I realized how little any of that matters to me. On that drive to the emergency room racing behind the ambulance that carried my love to an unknown future, was I thinking about what kind of car I was driving? Of course not. I just needed it to get me to his side. When we were talking to the care team after Patrick’s surgery and heard for the first time confirmation that what we were dealing with was the deadliest type of brain cancer there is, did my career as a lawyer come up in the conversation? No, because it made absolutely no difference in the trajectory of what was to come. No amount of money, education, or anything else of extrinsic value could give us the only thing we really wanted – more time.
 
Very few people outside of my carefully cultivated and intentionally small inner circle have any clue what it has been life to live daily in my chronically ill body. I have been told both implicitly and explicitly that I need to just “get over it” [insert your choice of “it” here] and go back to work, to stop being a drain on society, to quit playing victim and stop living in the past. Hearing these things used to really hurt. I felt so much guilt and shame over the fact that I could not do the things I had studied and trained to do, and that I had been indoctrinated to believe were all that mattered.
 
It took a lot of work in therapy, in my recovery, in lessons learned from betrayals and loss of relationships to unlearn those things that I once thought were my core values. Instead, those “values” were a product of mass marketing to create a society of thoughtless robots that play by the rules so the people in power at the top can stay there, and the rest of us can believe that we are somehow lacking. My automatic response when something goes wrong – or, perhaps better stated, does not go the way I expect – was to believe that it was my fault. I have spent much of my life far too uncomfortable with the proposition that sometimes there simply is no explanation for why things happen the way they do. While it felt awful to believe that there was something so fundamentally wrong with me that could be blamed for the misfortunes I experienced, that was easier to accept than being unable to find answers via reason or logic.
 
As I let go of those beliefs that were holding me hostage, I also began to let go of my need to prove myself to anyone. I began to feel the freedom that comes with not caring what people think about me. I stopped thinking I was unworthy of love because I did not have the fancy resumé I used to wear proudly across my chest. I realized that if people judged me because my physical and mental health challenges became disabling, that was their problem, not mine. Not everyone has to like me. If someone thinks that I am of lesser value because I am a “childless cat lady,” that speaks so much louder about them than it does about me.
 
The deeply meaningful work I have done on myself has led me to a place where I no longer hate the person looking back at me in the mirror. I sincerely, with every fiber of my being, love her. That is not to say that all of the parts of me that live inside get along all the time. Far from it. I often describe myself as living in a constant state of existential crisis. But as that love for myself began to grow, so, too, did that tiny fraction of hope that kept me alive during the darkest times. I still would consider it an exaggeration to say that my hope is brighter than my skepticism, but it continues to expand.
 
Over the last few months, those internal shifts have started to manifest into external change. After what felt like losing total agency over my life when I had to stop working and move home with family, I was finally able to buy a car again. Wow. Is it a brand new BMW like I had some years ago? No. Do I care? Absolutely not. I am thrilled that I have something that can take me where I want to go. I was able to move back into an apartment and live on my own. Does it come with luxurious features and a mortgage so I can call myself a homeowner? No. But it is mine. It is my beautiful space that I have cultivated to be a sanctuary, a place for continued growth and healing. Everyone who has visited describes it as warm, welcoming, and homey. It is full of bright colors, candles, and pictures of the people I love. My doormat says “I hope you like Taylor Swift and cats.” I have never been more excited about something used to wipe my feet; something that used to mean nothing to me, apart from its aesthetic. Now it reminds me that this life I am rebuilding is no longer based on fear or appearances. It is about celebrating all of me – the good, the bad, and the ugly – and the immense gratitude I have for the opportunities that are coming my way.
 
Without getting into the specifics, because I still get to keep some things just for me, last month something happened that removed the crushing weight of almost a quarter of a million dollars in student loan debt that has driven every single decision I have made in my adult life – every sh*tty job I took, every place I moved, and the impact all of that had on my health. I am still having a hard time integrating this information into my brain and body, because it does not seem real. It was something that I firmly believed was impossible to get rid of, that I would live with until the day I died. And, it would not have been possible to receive this relief if all of the terrible things that have happened over the past decade had not occurred. Oh, the irony.
 
A long dormant part of myself was recently reawakened in an unexpected, and in some ways unwelcome, way. I realized that my heart still had the capacity to love – deeply and completely. Even though it could not work out the way I hoped, it showed me how much I have changed. I do not have to be afraid of becoming the jealous, insecure, fearful woman I was in past relationships – because I am no longer her. I saw that I can meet challenges and conflict head on, and that not every disagreement has to be a fight. I made choices that reflect the woman I am today, who respects other people more than I need to have my own wants fulfilled. I was reminded that feelings will not kill you, even when it seems like they will. Even amidst the vacuous space I am currently in trying to sort through it all, I know I have been through worse and I will get through this, too. I have gratitude for being broken hearted because I know my heart still works. That gratitude is only that tiny sliver right now, and I am mostly still in the throes of grief. But it is there. With time, it will grow. And when the right partner comes along, I am so thrilled that he will get to be with the woman who lived through all of that pain, and who can show up fully without feeling like she just needs that last puzzle piece to be complete. I am that puzzle piece.
 
This is not what I thought my life would look like ten years after that catastrophic night when I looked into Patrick’s eyes and saw our hopes disappear. But I would never trade what it feels like for anything.