It was the biggest leap of faith I could possibly imagine. After almost eight years, I left my job as a litigation attorney without a back-up plan because I knew deep in my bones that I could not stomach the work I was doing for a moment longer. I was ill in a myriad of ways – I had been diagnosed with rheumatoid arthritis; I underwent back and elbow surgery the same year due to chronic pain issues; I had debilitating migraines; the list goes on. I also frequently suffered panic attacks and bouts of depression that rendered me unable to leave my bed, contemplating how much better off my loved ones would be without me. I had been meditating for several months and it became clear that I would not be shown the next step until I let go of my job and everything that came along with it.
Now, for a girl who never does anything without a Plan A, B, C and usually D, this was an enormously uncomfortable challenge. How would I pay the mountain of debt from my school loans and the bills that resulted from my husband’s illness and the fallout after his death? Where would I live? What was I going to do? Most importantly, who was I without my identity as an attorney?
I did not have answers to any of these questions when I decided to quit, but the physical and emotional consequences of continuing to do something that was so diametrically opposed to the woman I had grown into through my experience as a care partner for my late husband that doing barely felt like a choice. I could either continue bartering my life away in 0.1 billable hour increments that made me feel like I was selling my soul with each passing hour, maybe making partner at my law firm and perhaps hitting all the “right” markers in life, or I could do the scariest possible thing and leave it all behind for the unknown. It was a classic conundrum of following the devil you know versus the devil you don’t. Ultimately, I opted for the latter.
The consequences of my decision were immediate and drastic. Gone was the nice apartment in the suburbs; instead, enter a storage unit piled to the roof with the things which at one point seemed so important, and the incredibly humbling experience of moving home with my family at 34 years old. In leaving the area where my husband and I had lived, gone, too, were the daily reminders of our lives together. I saw friendships which I believed would withstand the test of time and distance fade away once the convenience of shared interests was gone. I had to call many of my debtors and explain my circumstances, asking for a reprieve so that I wouldn’t have to file for bankruptcy.
Once the daily distraction of playing a character I was not ever meant to portray was over, my own obsessively self-critical mind resurfaced with a vengeance. Now, it had always been there, but without anything else to take up my energy I became laser-focused on my flaws. Even though I could see the absurdity of all of it, it felt like there was nothing I could do but watch in horror as my “inner asshole” pointed out every ounce of extra fat, the ever-increasing number of wrinkles on my face, my too-thin lips, etc. The mean girl that lived in my brain finally had free-reign and she was going to make the most of it. I was not entirely sure that she would not destroy me before this was all over.
Every day I entered my meditation not from a place of quiet openness, but rather labored anticipation of when I would finally receive the inspiration I was looking for. I thought if I sat with the Universe and behaved well enough, I would get the answers I was looking for – and in a timely and appropriate manner, by my definition! I wanted desperately to be shown what job I was supposed to find, the one that would perfectly support my desire to use my tragic and profound life experiences for the benefit of others while also providing enough of an income to live on comfortably. First, days passed… then weeks… then months. No e-mail from God came through with the answers I was looking for. Instead, I was continually asked to recover from the trauma of the last few years, rest and wait. UGH.
Aside from my negative self-image, the idea that in order to be loved and valuable I had to prove my worth was pervasive. My fear of financial insecurity was almost too much to bear. The more time went by, the more tempted I was to give up on the strong inner knowing that I was meant for a bigger life than the one that safely fit inside the lines but made me woefully unhappy. I spoke to a legal recruiter who had endless amounts of options for me, if I was willing to sacrifice my dreams and play by the rules I had outlined for my own life years earlier. I have been tempted to do so more than once. “Maybe it will be different this time,” I hear myself saying repeatedly. “Maybe because I have changed, my perspective will be new and it won’t seem so bad.” But, even typing that out now, I get the restless, sick feeling in my gut that alerts me when sirens of danger are sounding. I know what the definition of insanity is, and I don’t want to go down the familiar road to inevitable misery.
The only thing that seems to make any sense in this period of change is to focus on what my true passions are. Starting this blog might seem like an insignificant step to some, but it has allowed me to use my love for the written word to explore my own heart in ways that I was unable to before. I traveled to Chicago for the annual meeting of the American Association for Cancer Research as a member of the Scientist <-> Survivor Program where I learned about the science of cancer and its treatment so that I will be a more effective advocate. I spoke at a first-ever “Cancer Perspectives” event to a company that is designed to support patients through cancer treatment and survivorship. As I write this post, I am on a flight to Washington, D.C. to participate in “Head to the Hill” with the National Brain Tumor Society where I will meet with my congressional representatives to push for research funding for the brain tumor community. I am the busiest unemployed person I know of.
In spite of the continuing challenges, I am more grateful every day for having enough faith in myself and my own intuition to abandon the path I thought I was supposed to be on. I worry less about where I am going to end up and am more excited that I could move literally anywhere and do anything. My inner asshole still pokes at me, but she is quieter these days. I am beginning to know who I am and what is important to me, both of which entirely eluded me after Patrick died. I actually can see the value in who I am without it being tied to what I do. I know that I have personal and professional experience that will make me a huge asset wherever I end up, be it in an ashram or another law office. And, perhaps most importantly of all, I no longer worry about what anyone else thinks about the choices I am making. This is the freedom I have always been searching for in jobs, men, clothes, and “stuff.” I am almost convinced that who I am has nothing to do with any of those things. Almost.
I heard recently, “You don’t have to do something just because you said you would.” Changing course doesn’t mean that I am flaky or that I am a failure for not following through with my plan. It means that I have changed because my life was irrevocably changed the day Patrick had his first seizure.
I understand that not everyone feels like they have the “luxury” of making drastic changes like those I have – I have gotten this reaction a lot from people in my life to my choices. They have bills and responsibilities! I get it. I thought I was destined to be imprisoned by these, too. The truth is, you always have a choice. It might mean having to humble yourself, change your lifestyle, and giving up things that are not only important to you but define you. It will hurt. It will be terrifying. But it just might be the best thing you ever did.
I involuntarily became a part of the brain tumor community after my husband Patrick’s deadly glioblastoma diagnosis in 9/2014. About a year after he died in 7/2015, I became an advocate and began working to advance progress toward better treatments and ultimately a cure by pushing for more research dollars and meeting with my congressional representatives to push public policy aligned with that goal. The most meaningful part of the work I am doing has been the relationships I have built with other advocates who come from all areas of the brain tumor space: patients, care partners, scientists, physicians, and others impacted by the life-changing and often life-ending diagnosis.
I have learned so much by interacting with those one the front lines of the disease, and the lessons extent far beyond the brain tumor landscape. One of the most controversial topics that I often see people bravely confronting is end of life and one’s wishes surrounding the same. I see courageous patients posting their own advanced directives on Twitter to the #BTSM (brain tumor social media) community to educate others on what these look like. I listen to conversations being had about quality of life versus extending life merely for the sake of quantity of life. I watch people confronted with the very same illness that my sweet Patrick was who are navigating the progression of the disease with such grace and dignity that I am in awe.
In our highly death-phobic society, it seems that those tough conversations are rarely had until one is faced with mortality itself; but even then, it often feels like too much to face. In the most tragic circumstances of all, those discussions are never had until it is too late.
My experience with Patrick’s illness and death was, unfortunately, just such a tragedy. Before Patrick suffered the first grand mal seizure that put him in the ICU and ultimately led to his diagnosis, he was the picture of health. At age 54, Patrick had not had an alcoholic drink in over 25 years. He quit smoking almost two decades earlier. He rarely, if ever, went to the doctor, not just because he was stubborn but because he really had no need to. He exercised regularly and his diet consisted primarily of high quality protein, cruciferous vegetables, and fruit in limited quantities. He looked easily ten years younger than he was – the man had six-pack abs, for crying out loud. He worked in tech sales at a San Francisco start-up company and regularly traveled the world. I was many years his junior, so for similar “I’m-healthy-so-let’s-not-talk-about-sad-stuff” reasons, we never had a conversation about what we wanted in the event something went terribly wrong for either of us. I had learned a couple of months before his first seizure that Patrick did not have a will or trust set up. As a lawyer, this seemed extremely irresponsible given the fact that he was previously married with two young adult children, and I had urged him to get this done, but that was as far as our discussions went and he had not heeded my advice.
We had no reason to suspect that Patrick would go from a vibrant, independent provider to a person who required 24/7 care overnight. But that’s exactly what happened, and we were not ready when it did.
When Patrick first went to the hospital, we did not discuss the potential serious consequences of a dire diagnosis because we were told that he did not have one. The well-intentioned doctors were wrong, and within weeks Patrick underwent a craniotomy and received the diagnosis of GBM, a Grade IV tumor with a median survival rate of 15 months. By that time, I was so shocked, confused, devastated, and otherwise befuddled that the idea of having a conversation about Patrick’s wants and needs for his future given the circumstances was almost too painful to broach. It was not until the fourth hospital Patrick visited in the first two months that the first doctor even asked us whether he had an advanced medical directive, and suggested we get one in place, which we did.
I know that I was a large part of the reason we did not have clear and unemotional dialogue about the realities we were facing and what Patrick wanted. I had the common but extremely naïve belief that having those conversations meant that we were “giving up” on Patrick’s treatment, and resigning ourselves to the fact that he would not make it. I remember one time Patrick looked at me with tears in his eyes and said “I want you to find a nice man, Lisa. You’re going to have to date again someday…” Instead of responding with kindness and empathy, I shut down the conversation and sternly cautioned him to not think that way because he was going to make it. He quickly backed off, and never brought it up again.
In hindsight, this interaction was one of the biggest regrets I still have from that time. I wonder how different things might have been if I had been willing to hear him. I wonder if he would have been in less emotional pain if I had allowed him to talk about the fact that he was likely going to die. I wonder if my blatant refusal to accept reality made it harder for him to accept his own death.
It isn’t just talking about dying, either. It’s also talking about what happens afterwards, to the ones left behind. If we had, I wonder if I would have suffered less once he was gone. I was constantly walking around in anguish wondering how Patrick would feel about how I was trying to move forward and live my life. How would he feel about me leaving the home we shared? When should I stop wearing my wedding ring? What would he think if I ever decided to date again? I didn’t know how to honor our love and be okay at the same time. I didn’t know, because I didn’t ask when I had the chance.
Our failure to have those important conversations put an extraordinary amount of pressure on me has Patrick’s primary care partner. I arranged for him to see a lawyer to set his affairs in order, but because of complicated dynamics with Patrick’s family, I sent a friend with him to the appointment to avoid the appearance of untoward influence. This resulted in his wishes being incorrectly outlined in the documents, causing additional conflict among the family for almost a year after he died. I second-guessed decisions about his medical treatment, which by the end I was completely in charge of as his medical proxy. The constant pressure of Patrick’s illness and feeling responsible for my failure to “save him” was a huge contributing factor to my diagnosis with PTSD months after his death.
Waiting until the end to talk about the end poses the unique risk that your loved one won’t be able to meaningfully participate in those conversations. In Patrick’s case, his tumor caused him to suffer from expressive aphasia, which is the partial loss of ability to produce language, in his case due to his seizures. As a result, communication was often difficult and it was not always clear that his words lined up with what he wanted to say. This worsened with his disease progression, and I often think about how the legal issues might have been averted if we had done this early on.
By avoiding tough conversations, you can also open the door to criticism and skepticism from others who question whether your loved one was in their “right mind” when decisions were made. Although we had been planning to get married long before Patrick was ever sick, Patrick did not discuss this with his family for fear of what they would think. We decided to get married towards the end of his life when we realized we did not have much time left. I remember getting a call from a social worker at Patrick’s medical facility after we had decided to get married. She told me that Patrick’s sister was trying to get the doctor to make a statement that Patrick did not have the legal mental capacity to agree to marry me. His doctor made it clear that although his ability to express himself might be compromised, he was still able to make important decisions. It was a painful and unnecessary diversion for what was otherwise a beautiful and special day.
There is a fine line between having faith and hope for a positive outcome and being completely blind to reality. Hope and delusion can be two sides of the same coin. I was well-intentioned in my denial. I wanted to “keep the faith.” I did not want either of us to give up. Nonetheless, our failure to plan for the worst while hoping for the best made everything so much harder than it needed to be.
The truth is, none of us is getting out of here alive. It feels like we are all walking around avoiding having these difficult discussions with others, or even acknowledging how we feel about this ourselves, because we are afraid talking about it will some how hasten death’s arrival. The kindest gift you can give your loved ones is clarity about what you want. Remove the guesswork. Grief can make even the best people angry and spiteful, and behave in ways you would never imagine. Do not let your fear of dying give anyone room to question your wishes.
Lisa O'Leary is a lawyer, cat mom, widow, sports enthusiast, truth seeker, soul searcher, meditator, and consciousness practitioner who is actively engaged in quieting down the mind to allow the song to play.