I did it.
At long last, I have managed to return to “real” life. I am working full-time as a lawyer again. I am teaching spin classes, loving every moment of grueling sweatiness in front of a candlelit room. I have continued my volunteer work as an advocate, most recently attending the “End Well” conference in San Francisco, a day-long symposium focused on making the end of life experience more patient-centered. I am active in my recovery program, sharing my experience on how to get and stay sober with several beautiful young women. I am working with a personal trainer who challenges me at every one of our twice weekly meetings. I am regularly hiking trails that six months ago I could barely have completed. I remain focused on my spiritual practices, and though the attention they are given wanes occasionally, I don’t have to step too far out of line before I am gently (or violently, as the case may be) reminded of their necessity.
I am busy nearly all of the time. My life is full. I am content. I feel good about myself when I look in the mirror. I am so proud of the progress I have made, and so grateful that the Universe has seen fit to allow me to rejoin the human race.
So, naturally, it was also time to throw a wrench into the mix and start dating.
I had once dipped my toe into the online dating app world about a year and a half ago, and found the experience to be miserable. All the potential suitors I “matched” shared little in common with me, nor was I much attracted to them. I went out with one guy who half way through our second date started repeating stories, and I realized he had already reached the end of the “who am I” conversation. I was shocked – I mean, I wasn’t even through adolescence yet! The truth was, I simply was not yet ready at that point to date; the pain of losing my husband Patrick to brain cancer still too fresh. It was no wonder that everyone I found little or no connection with anyone. After a few terribly dry dates and a grand total of two weeks, I swore off dating apps for what I thought would be forever.
It all started just over a month ago. One of my close girlfriends told me she had just joined a dating app – and not just any dating app, but the very one that I had solemnly and a bit self-righteously declared myself too good for just a year prior. She shared with me the first few interactions, and they didn’t seem so bad. All that week I kept getting nods from the Universe that it was time to try again, which I first tried to ignore. Gradually, these nods became more persistent, and more obvious. “Really?!” I remember asking the Universe out loud. “Why on Earth would I subject myself to that nightmare again?” The answer, it seemed, was because it was time and there were lessons for me to learn.
That weekend, I was out to dinner with two of my closest friends, a couple who met on one of the most well-known dating apps. They were a great success story: completely in love, married, and expecting their first child. We started talking about dating, and how it might serve me to try and “put myself out there again.” Finally, I conceded that they had a point when they asked “What’s the worst that can happen? You don’t enjoy it, and you delete the app again.”
Somewhat begrudgingly, but with a notable hint of amusement, we downloaded the app on my phone during dinner. They picked out all the pictures I should use and helped me to keep my “profile” (read: sentence-long blurb without any real possibility of providing insight into who you are) light and funny. I am not sure why, but I didn’t expect to match with many people – but within a couple of hours, I had over a dozen connections. I was immediately overwhelmed! How was I supposed to manage talking to one person, let alone all of them?! I didn’t have the emotional bandwidth for that! Sensing my panic, my kind and patient friends told me not to worry, and that I did not have to talk to any of them if I didn’t want to. They reminded me that I was in charge, that I was the prize here, and that my self-worth was not tied to the outcome of any of these interactions. It was just what I needed to hear, and I took a deep breath, and said my first “hello’s.”
The very first guy I talked to was handsome, funny, and witty. He was also interested in meeting up in person right away which, although it caused me to take a hard gulp, I really appreciated because I honestly had no interest in texting some random person for weeks on end without it materializing into anything. I have real friends and real relationships for that! I also have zero interest in playing mind games with people, or wasting my time.
We set up our first date for the next day, and it went great. We talked for hours. There were a few things that gave me pause, but I tried to give him and the situation the benefit of the doubt. We went out again the next day. And the next. It was like a three-day long crack binge of attention that I had not experienced since the early days with Patrick. I also knew intuitively that it was completely unsustainable; no one could ever maintain that level of engagement because, you know, we have lives to live! I saw my historical pattern with relationships of jumping in with both feet without a life vest immediately repeating itself, and although I knew this was probably not going to turn out like I wanted to, but I went with it anyway. All I wanted was another hit.
It was not long before his true self started to be revealed. I realized that he had lied about several things, some really important, and some of those white lies that you don’t even know why someone bothers lying about because they don’t have to. Within a few weeks, I felt like I had been kicked in the teeth, and I knew there was no way that I could continue to see him without completely compromising my own integrity and self-worth. It felt crushing, because even though our interaction was so short-lived, it had been intense and in some ways amazing. I found myself wrought with disappointment. The desire to close my heart off again came strongly, but I refused to do so. I know the best way I can make amends to myself for the years of self-abuse and punishment is to remain open to whatever the Universe wants me to experience, no matter how long that is or how it turns out. Instead, I took my licks and kept moving.
One of the most important lessons I learned from that first experience was that I walked in as sort of a doe-eyed ingénue – I believed that because I have spent so much time working on myself and being comfortable with unapologetic authenticity, I made the incorrect assumption that the people I came in contact with were doing the same. It was naïve, and very far from the truth. Most people don’t spend as much time in their entire lifetime on a solitary self-appraisal as I have in the past year. Many don’t have the tools to handle stress and conflict in the healthy ways I have learned, which necessarily do not involve drugs or alcohol. This does not mean that I hold myself out as being above anyone else; rather, I just know that my self-awareness and desire for deep, soulful connection is not shared by not just the dating app population, but most of the world. And you know what? I am fine with that, because there is not a single part of me that feels like I need someone to be okay. I am no longer looking for validation. As I have shared in the past, I am not motivated by “checking the boxes” off of society’s mandated list of successes. I get to be 100% me, all the time. Take it or leave it. I’m good either way. What an incredible gift.
I have since been on a lot of dates. I have met some wonderful people. I have learned a ton about what I am really looking for in a partner. I have had experience in not just setting my own healthy boundaries, but holding them because I know that I am worth it. I have learned how to share my story about being a widow in a way that I am comfortable with. I am finding that it is the most refreshing feeling in the world to be able to share meaningful conversation with absolutely no attachment to where it may or may not lead.
I have also had several first date fiascos and strange interactions, which one would have to expect when engaging with perfect strangers. One person insulted me by suggesting I had too much time on my hands to respond to his messages. When I called him out for it, he tried to back peddle harder than Lance Armstrong and it rapidly devolved into a series of messages ending with "If you don't reply you're missing out on the best sex you ever had." I had one guy not only allow me to split the check (which, to me, is a faux pas if YOU asked ME on the date and it is the first time we are hanging out) but then spent five minutes figuring out how to divide the rest of it, after which he applied a gift card to only his portion of the bill. Another time, when a waiter asked if I wanted another drink and I politely declined, my date dismissed me and said "No, she'll have another" and proceeded to spend 30 minutes talking about motorcycles and muscle cars, barely pausing for breath. I just keep reminding myself that dating is one huge, weird social experiment, and that all of this experience is excellent material for a future book!
After losing Patrick, I did not know if I would ever be capable of connecting with people again. I now know that I am, and that it does not have to be scary because I don’t have to take it so seriously. On my 35th birthday last month, I celebrated with a single candle on my cake, because my wonderful friends reminded me I’m brand new again. I get a fresh start. It feels really, really good.
I woke up just before 2 AM today, wide awake. As someone who has suffered from insomnia on and off for most of my adult life, this isn't an entirely new experience; but, considering what an emotionally draining week it was and how I barely made it to my bed to pass out tonight, it was somewhat surprising. I can usually sleep through the night when I am this tired.
It was four years ago today that my late husband Patrick had his first seizure that led to his diagnosis with glioblastoma. And, it just hit me it's not just the date that is significant - it was just before 2 AM when Patrick's voice roused me from my sleep, finding him sitting on the floor, looking through me instead of at me, saying things that could not be described as words because of the small but deadly tumor that was growing in his right parietal lobe. The exact time I woke up tonight.
The memory of the subconscious is an incredible thing. Apparently, I have some processing to do that is more important than a few extra hours of rest.
This has been a difficult week for me and my family. My 4 year-old niece went to the emergency room last weekend with a 106 degree fever that was making her hallucinate and ask my sister to get the "ooey gooey stuff" off of her. Just two days later my mom got really sick and was admitted to the hospital overnight. (They are both feeling much better now, thankfully.) Seeing my mother in a sterile, artificially lit room lying on a bed donned with overly-bleached sheets was terribly triggering for my PTSD, which I so intimately relate to Patrick's illness and death. The beeping of the monitors, the alarms going off in other rooms, the intermittent shouting of an unruly patient (which thankfully this time was not MY patient), the white board where my mom's pertinent information was kept and where I drew pictures of flowers and bunnies to try and make her smile - it was all too familiar. As I pulled a chair up next to her bed, I felt my pulse speed up. I lowered myself slowly while the overwhelming dread and panic bubbled up under my skin so palpably I thought it would come out my pores. I took slow, deep breaths and tried to hold space for my own pain and discomfort, as well as for the fear and concern I could feel emanating from my parents. It was hard, but I did it using the tools I have worked hard to accumulate.
I have spent a lot of time since losing Patrick, particularly over the last year, contemplating my own mortality. I truly believe that I have accepted the fact that someday, sooner or later, I am going to die. If I have any say over the manner in which it happens, I hope that I will be able to die well. I want to remain focused on quality of life rather than quantity. If I have a prolonged illness, I want to engage palliative care early and often. If curative treatment fails, I want to bring in hospice to assist me and support my loved ones. Thinking about these issues has brought me a surprising amount of peace.
What the experience of this week has showed me, however, is that I still have a long way to go when it comes to accepting the mortality of the people I love. I have not been able to approach the subject with the same measured detachment that I have been able to attain for myself. As I listened intently in that hospital room while my parents recounted everything the doctors told them, I found it incredible difficult to resist the temptation to morph into "crusader mode," donning my cape and letting everyone know what they needed to do. That is exactly what I did with Patrick. I thought if I just managed everyone and everything that was happening well enough, I would be able to control the outcome. I wanted to secure MY outcome, namely that Patrick would miraculously be healed and we would live happily ever after. I was so driven by this obsession that I was perpetually disappointed in what I perceived to be a lack of help from others, failing to see that I was not allowing anyone to help in a meaningful way lest they upset the delicate plans I had in place. I unwittingly caused myself and those well-intentioned people who were afraid to cross my path so much suffering because I could not, and would not, accept an end result contrary to the one I wanted.
There is a part of me that is terrified that losing someone close to me again will actually kill me. Losing Patrick almost did. It is the same part that caused me to isolate myself for years in the wake of his death in an act of self-preservation and a twisted hope that if I didn't let anyone get too close I wouldn't fall apart when they were gone, in one way or another. That scarred, broken piece of my heart went on high alert when I saw my mom in that hospital bed. It wanted to announce "Good news everyone - I am here now. You can all rest easy. I've got this." I sensed, though, that this was an opportunity to try something different. Instead of fighting the feelings and emotions that were being stirred up, I was able to observe them. I did not have to stifle them by taking over control and making other people feel small and insignificant.
This does not mean that I have to sit idly by, ignoring the experience I have as a patient advocate that makes me uniquely qualified to help my mom or anyone else who seeks my assistance. Hardly. She will be the first to tell you that I have still been pretty insistent in offering guidance for navigating the system as it relates to her follow-up care. My experience has given me insight that is useful, and it is important for me to offer it when it is asked for and welcomed. But, what it does mean is that I am able to sit with what's happening without taking responsibility for it. I can finally see that I am not going to be the determinative factor in how things turn out, good or bad. What a relief to realize that I am not God!
When I was three months sober, I had the serenity prayer tattooed on my side: "God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference." This week's experience allowed me to live that prayer in a way I have not before been able to. I cannot change the fact that the people I love will be broken, hurt, sick, leave, and die. What I can change is how I respond. I am grateful to the Universe for yet another opportunity to discern the difference.
Starting over is hard.
When life falls apart, inevitably after the grieving, healing, and recovering comes a period of rebuilding. Once you figure out who you are, you have the chance to start again and mold your life into what you want it to be. It is exciting. It is unnerving. If looked at through the right lens, it can be seen as the most incredible opportunity. But, it can also provoke a ton of anxiety, poke at old patterns of self-doubt and insecurity, and feel totally overwhelming.
It has been three years since I lost my husband Patrick to brain cancer. I have come farther in the past year than I ever could have imagined. I followed my intuition and left a job that left me physically and emotionally sick. I faced a leveling of my ego as I let go of the identities that defined me. I learned to listen to the quiet voice that shows up in the stillness of meditation which has never steered me in a direction of harm, and I trust that it never will. I took responsibility for my physical health and started treating my body like it was the only one I will ever have and acquiescing to what it asks for, whether that is rest, nourishing food, or vigorous exercise.
Of course, all of this positivity has inevitably been accompanied by the deep pain that seems to be necessary for me to grow. I have intentionally removed myself from most social situations because I have been emotionally unavailable to build meaningful relationships. My life has revolved mostly around solitude interrupted only by brief interludes of human contact, enough that I don't feel completely disconnected from humanity but not so much that I might evoke feelings that precede attachment. This has worked for me for a long time, but recently I have started to feel the pull to open my well-guarded heart again to not just the spirit of the Universe, but also to other living, breathing human beings. This, my friends, is scary territory.
I met Patrick more than seven years ago, and I had eyes for no one else from that point forward. Before that, I spent several years being single, mostly because I hate the awkwardness that is dating. I don't like playing games. I am uncomfortable dealing with people who aren't up front about how they feel. I don't like not knowing where I stand with someone, or wondering whether I am breaking some unwritten rules of engagement because I decide to call someone that I want to talk to without waiting a certain amount of days. As a general rule, what you see is what you get with me, and I have never had a desire to submit to society's protocol on dating. As a result, I just avoided it entirely, save a few bumbling, inelegant forays into the field that often yielded little but discomfort. It's no surprise that my pattern with relationships tends to be establishing mutual attraction, immediately followed by "Let's move in together!" It is my unhealthy but surefire way of avoiding the ambiguity of dating by rushing straight into a serious relationship.
After Patrick died, for the first couple of years I was perfectly comfortable with the idea of becoming an old cat lady who never again risked the excruciating pain of a broken heart. I felt that our love story was beautiful and significant enough to last a lifetime and there was, therefore, no point in putting myself back in a position to experience such extraordinary loss. I had such a huge amount of work to do on reconciling with the woman that was loved by Patrick and the one who was left behind that the very idea of dating again was untenable. Given my past-described experiences, I was fine with the prospect of perpetual singlehood for my remaining time on this planet.
Over the past year however, as my spiritual practice has grown, I have started to realize that there are certain lessons that cannot be simply absorbed through osmosis, watching other people in their relationships while keeping myself safely at a distance. It is easy to feel spiritually evolved while sitting alone on a mountaintop. It is an entirely different challenge to maintain the sense of peace I have found while actually interacting with other human beings. People are unpredictable. They might feel one way one minute, and change their mind the next. They cause hurt feelings. They poke at the dark places in my subconscious that still seek to keep me perpetually restless, irritable and discontent. Why, for heaven's sake, would I voluntarily expose myself to that kind of uncertainty?
The answer to that question has become glaringly obvious: because without allowing for the possibility of the pain that comes when things inevitably end, whether voluntarily or not, I will also never experience the beauty, growth, and wonder that accompanies the phenomenon of coexisting with a partner. Simply put, my soul has a lot more to learn in this lifetime, and part of that learning will necessarily involve a romantic relationship.
This all has started to become clear to me over the last few months. As it did, I started facing questions that I imagine most widowed people deal with: how do I honor the love and relationship with Patrick while still moving forward? How do I bring up this critical experience which has molded me into who I am today to potential suitors without appearing like I am stuck in the past? How can I reconcile my genuine belief that Patrick was my soul mate with the prospect of allowing someone else to walk beside me in this lifetime? How do I avoid the pitfall of constantly comparing the life I once had to the one I have now?
In the past, these questions were enough for me to crawl under the covers and hide from the world, sheltered from confronting them but also prevented from experiencing the real joy that comes with sharing life with a partner. Today, because I want to live my dharma and participate in the spiritual evolution I agreed to undertake on Earth, I don't have to let my fear of these unanswered questions stop me from moving forward in a meaningful way. I have learned how to hold space in my heart for Patrick and our love, a place that is so sacred no one can touch it and that is not in danger of being replaced. I have let go of my worry about what other people will think about me when they see me holding hands with someone else for the first time. I have accepted in the core of my being that Patrick would want me to experience love again and that doing so does not constitute a betrayal of what we had; in fact, it is quite the opposite. I think that the single greatest way I can honor my love with Patrick is by living and loving.
This does not mean that I am going to jump back into old patterns and start actively seeking out a partner. As Seinfeld would say, "Not that there's anything wrong with that," but it's just not where I am at. It is enough for me to simply wake up in the morning with a clear head and ask for the Universe to help me open my heart a little more each day. The rest will take care of itself if and when the time is right. If it turns out that this intuition is wrong and I actually am destined to be a cat lady, that's okay with me, too. I am content with myself and I know that I am enough all on my own. The most important thing is that I acknowledge every day that I am allowed to be happy, and that I accept whatever form that takes. I'm sure this seems like a simple and obvious premise to many, but it has taken a long time for me to get here, and I am extremely grateful.
About a month before Patrick died, in a moment of clarity, we talked about what was going to happen to me when he was gone. I told him that life wouldn't matter anymore. His response was, "You have to make it matter - if you don't, who will?"
It's 3 AM. I stare at the ceiling in the dark, nothing more than a black haze. I try to control my breathing as I feel my heartbeat speeding up. The lump in my throat grows, slowly at first but progressively quicker, until it starts to feel like I am being choked. I count to ten meditatively, letting my thoughts go where they will. Then I count to ten again, and again.
The darkness starts to feel foreboding. It jogs memories of the blackest night of my life where death came and stole my loving husband away from this world years ago. The quick beat of my heart starts to feel like palpitations. The space under my breastbone begins to tighten in increasingly painful, unrelenting contractions.
I start to feel afraid of the dark, like a child who is just learning to go to sleep without a nightlight. I turn my bedside lamp on and switch the TV to some terrible reality show that I have already seen for background noise. I hope against hope that this will be enough to quiet the frantic thoughts running through my head to allow me to go back to sleep.
I wonder briefly if I am having a real cardiac event, but the experience has become familiar enough to tell me otherwise. No, this is a good old fashioned panic attack.
Despite feeling quite the contrary, this not going to kill me. It's just going to make me miserable and scared for long enough to temporarily drain all of my energy. You might think after how many of these I have had, once identifying the source of my symptoms I would be able to simply take a deep breath and let it go. As if knowing the rational, fact-based reasons for these sensations would be sufficient to make them dissipate.
Too bad that isn't how it works. As a wise person once said, "Self-knowledge avails us nothing."
After laying in bed for over two hours, I decide to hit the earliest spin class I can at my cycling studio. It may not fix it, but it might give me a brief reprieve while I focus on not falling off my bike. No such luck. The thoughts continue to fire without ceasing. "Okay fine, I'll go to the gym next!" I spend another hour lifting weights, trying to make my body so tired that my mind can't possibly keep up the barrage of commentary. And still, it continues. I do manage to physically exhaust myself enough that I collapse on my bed upon returning home for almost two full hours. I wake up to a moment of quiet before the chest pain starts again, this time accompanied by beads of sweat on my forehead and nausea in my gut.
Hours later I manage to put on some clean clothes and drive myself to my favorite local coffee shop. Lord knows I don't need any caffeine, but I do know that sitting alone in my bedroom will not help this pass any faster. I watch people come and go. Some look happy, some look stressed, some look indifferent. I know that I have no idea how anyone actually feels, because I look completely normal. All the while, my anxious mind and heart do backflips and keep me right at the edge of a full-blown meltdown.
Eventually, and thankfully, the physical symptoms start to subside, though my brain continues to incessantly run through my self-created list of problems. What are you going to do with yourself? How are you ever going to make enough money to sustain an uncomplicated, quiet life without taking another job that leaves your soul painfully unfulfilled? What if you never feel better than this? My inner asshole, who has been relatively contained as of late, is making up for lost time.
There is some benefit to having years of experience with these often debilitating episodes with anxiety, the most important of which is knowing that it WILL pass. Sometimes it takes days, even weeks, but without fail it always improves. Even looking back at some of the most poignant episodes of panic that occurred when I was diagnosed with PTSD a few years ago reminds me that as excruciating as this feels, it is nowhere near as bad as it once was. In the past, I was not able to leave the house when this happened because a single encounter with an angry person on the freeway would send me spinning out of control. Today, I carried on and practiced as many healthy tools as possible to manage my way through. I didn't eat a sheet cake, instead nourishing my body with exercise and food it likes. I didn't go on a shopping spree for things I don't need with money I don't have. I didn't start a fight with anyone to distract myself from the real source of my discomfort. I sat with it, all damn day. And it's not gone yet, even as I write this.
The reason I share is because anxiety is an invisible foe. It might be afflicting that person who just cut you off on the road, the checker at the grocery store who wasn't friendly during your exchange, or your boss who blew up at you over a seemingly harmless mistake. Or, it might be the girl sitting across from you at the coffee shop, smiling through her pain and just trying to survive one more day. I hate cliche sayings, but the one that certainly applies here is "Be kind, for everyone you meet is fighting a hard battle."
Brief moments of humanity have kept me from falling over the edge more times than I can count. Extend kindness wherever you can. Love your people. Be the most compassionate toward those who throw pain and anger your way, even if it's hard. Because you just don't know.
Anniversaries are hard.
It has been three years today since I said goodbye to my husband and the love of my life, Patrick. Three years since holding his hand as the last breath escaped his lips. Three years since I felt his embrace, touched his skin or saw him smile. Three years since he burst into our home in a fit of excitement over something or nothing, because he was so full of life that the 'nothings' were just as important as the 'somethings.' Three years since he stood in front of the TV doing a silly dance because he knew it would make me laugh. Three years since he called just to tell me how much he loved me. Three years since he looked me in the eyes in that way only he could, already knowing what I wanted to say without uttering a word.
Three years is one thousand ninety-five days. Not that I'm counting.
To be honest, most of the time now I'm not counting. I am pressing forward. I have completely readjusted my priorities. I left a job that was unaligned with my soul. I spend most of my time pursuing spiritual goals rather than material ones. I am still overly careful with my tender heart, but I am learning to let people in again - because that is what Patrick would want, and it's what I want. I don't spend every day in morbid reflection anymore over what might have been if he had never had that seizure; if the doctors had been right the first time, and he hadn't had the most aggressive brain cancer known to mankind; if we had gotten a chance to live the life we hoped to have. I am taking gentle care of myself in every way possible. I am regaining my physical and emotional strength so that I can rejoin the stream of life in the most meaningful way I can. I am proud of the progress I have made and the willingness I have had to face the pain head-on, sober, without ceasing. I have never given up even when I wanted to, or when the desire to be removed from this world felt stronger than the one to stay. I have survived.
But today, I am sad. And that's okay.
What follows is an excerpt of the words I shared at Patrick's Celebration of Life, which was held a few weeks after he died in the room where we first met. I felt compelled to share this so that those of you who did not have the privilege of knowing him in this life might be able to understand in some small way the impact he had on everyone around him.
Patrick always said that he felt like God took both of us, faced us toward each other, and said “Here. This is what you’ve been looking for.” We both knew it would be complicated, but we also knew it would be worth it. From the beginning our relationship was built on mutual respect, a commitment to a lifetime of service to others, and a friendship deeper than either of us could imagine. We met in our recovery fellowship. I remember where I was when I first saw him. There was just something about Patrick O’Leary – I knew my life was never going to be the same.
When we had been dating for a little less than a year, Patrick took his kids to Disneyland for three days. This was the longest we had been apart since we started seeing each other and I literally threw him a welcome home party because I missed him so much. On the door of our apartment, I put a sign that said “Baby, I love you because…” and laminated all of these little pieces of paper with reasons on them. I found the papers in an envelope in one of his boxes, and I would like to read what it said because it gives a small idea of how much he meant to me.
BABY, I LOVE YOU BECAUSE …
You make me feel like the only person you can see, even when we're in a crowded room.
You're as silly and goofy as I am.
You have the biggest heart of anyone I've ever known.
You always want to take care of me in every way you can.
You always tell me how beautiful you think I am, even when I'm a hot mess and you know it.
You always want to spend your time with me.
You're not afraid to talk about our future.
You love me enough to want to spend your life with me.
I know I can trust you with everything, especially my heart.
You're a great example to me of what it means to be a sober member of our fellowship I'm always encouraged to be better because of you.
You're willing to do whatever it takes to help me, no matter what.
You're always thinking about ways to make me happy.
You make my lunch every day and do endless little things to show me how much you love me.
You love being in recovery as much as I do.
You make me feel like I'm a priority all the time.
You forgive me when I'm unforgivable.
You love me even when I make huge mistakes.
You stick with me while I try to figure out how to be the woman you deserve.
You never give up on me.
You're sexy as hell.
You believe in me.
You love your family, especially your kids, in a way that most people never experience.
You're loyal and faithful.
Your kids are awesome.
You allow me to be a part of every aspect of your life.
You're patient with me.
You're my safe place.
You protect me and I know I don't have to worry about anything when you're with me.
You're hilarious and make me laugh so hard my stomach hurts on a regular basis.
My heart is not whole when you're gone.
I get butterflies in my stomach when I think about you.
You get me in a way no one has ever gotten me.
When I picture my life, I can't see it without you.
You're incredibly generous with me and everyone you know.
Did I mention you're sexy as hell?
You're always thinking about my happiness and what you can do to make my day brighter.
You're constantly being of service to others.
You remind me that I'm an example to others, whether I like it or not, and it helps me behave better.
You love chocolate and cheese as much as I do.
We are the same person (and I’m awesome).
We love all the same things.
You love my kitties.
You want to build a life together.
You don’t mind when I dance and sing like an idiot. I think you actually enjoy it.
You’re better that what I pictured when imagining the man I would end up with.
AND FOR A MILLION OTHER REASONS …
I love you with all of my heart.
When Patrick and I had been dating for about six months, we got a pair of swallows tattooed on our shoulders – we each had one. The meaning behind this was that swallows mate for life, and even if one of them dies, the other never has another mate. We knew, after that short amount of time, that we were soul mates. I knew that he would always be “the one,” the true love of my life.
In August 2014, Patrick and I took his kids on an amazing vacation to Maui. We drove the road to Hana, explored waterfalls, swam with sea turtles, took surfing and stand-up paddle boarding lessons. There was no indication that anything was wrong – in fact, he was in pretty much the best shape of his life. We had no idea of what was about to happen, and that our lives were going to be turned upside down forever.
On September 15, 2014, I woke up at 2:30 in the morning to Patrick sitting straight up on the floor speaking really loudly, but everything coming out of his mouth was gibberish. I called 911 right away, thinking that he was having a stroke. He had two seizures on the way to the hospital, which led to a medically-induced coma for 36 hours and four days in the ICU. After that came surgery, months of hospitalizations, radiation, chemotherapy, rehabilitation – the list goes on and on. And while there were some impossibly hard moments, some of which lasted for weeks at a time, I was constantly amazed at the grace and dignity he displayed through all of it. When he came out of his surgery to remove the tumor and was in the recovery room, the first thing he did was crack a joke about how his surgeon was about 12 years old. He made sure that he had his daughter go out and buy me presents for my birthday because we were at in the hospital. He was constantly concerned with how I was, how his family was, and what he could do to make US more comfortable. And that, my friends, was Patrick. Even when he was faced with a diagnosis of terminal cancer, his first thought was how he could help those around him to get through it. While the ten months of his illness were brutal, I wouldn’t trade it for anything. It was the greatest honor of my life to hold his hand every day and let him know how loved he was.
The night he passed, it was just the two of us together. I knew he was still fighting even though he was slowing down. Through my tears I managed to choke out, “I love you, honey. I’m going to be okay. You can go now.” And at that very moment, he took his last breath.
Patrick truly was the best thing that has ever happened to me. He taught me through his example how to be selfless, how to love passionately, how to conduct myself with dignity and grace in the face of the most extreme adversity I could imagine. I knew I wanted to marry him long before he ever got sick, but there were so many times I was afraid that we would never get to see that day. The fact that we were able to get married just six weeks before he passed and committed to love each other forever was a testament to his strength and amazing spirit, and his refusal to lie down for anyone or anything. He changed my entire life. On our wedding day I promised that I would love him every day for the rest of my life, no matter what happens. I intend to honor that promise. I believe that our love story did not end the day he died. He’s with me every day. If you’d like to hear how he’s been visiting me, just ask. And if you’re wondering whether it’s okay to talk to me about him, PLEASE DO. He’s all I want to talk about, so don’t hesitate because you think it will make me too sad.
One of the first doctors who treated Patrick in the ICU was so caring and loving to both of us, and he kept in touch with us long after Patrick was no longer his patient. He sent us a card that I would like to share, because I believe it sums up who Patrick and I were together.
“Dear Patrick and Lisa,
I hope that this card finds you both well and in good spirits. I wanted you both to know that since the very first time I cared for you both, I have always been amazed with the incredible love and devotion you have for each other. Living through cancer is an experience only those who have lived through it can understand, but to do so with the love, commitment and grace you have shown for each other speaks to your incredible will and strength. I just wanted you both to know how much I admire you both and am inspired by your love for each other. Please accept this small gesture of my thanks for your friendship.”
I always said Patrick was larger than life. The fact that he was taken far too soon confirms that I was right. I know he’s up there, watching over all of us, and fulfilling the next phase of his journey undoubtedly with a huge smile on his face and his hand stretched out to help wherever he is needed.
Patrick, please save me a seat next to you at the big meeting in the sky. I promise to make you proud.
These words are as true today as they were three years ago. For those of you who think that sharing this means I am dwelling on the past, or that I haven't moved forward, all I can say is you're wrong. Neither Patrick or I are holding me to the standard symbolized in our puppy love tattoos, but I will always, always love him with a fire that burns deep in my soul.
Love does not die when the incarnation of this human form ends. I continue to honor Patrick, today and every day, by living the best life I can manage and holding space for the hole in my heart that he left behind.
To my bunny, sweet pea, honey, baby, love bug, goobey bopkin head, and all the other silly names I called you - I love you to the moon and back, forever and ever, amen.
I have been thinking a lot about the concept of "home," and what it really means to me. I am sure this is being stirred up as I have spent many months setting up temporary residence with my family, all of my things in a storage unit hundreds of miles away, not feeling particularly rooted to any place or anyone. This question naturally comes up as I shed each of my identities, one by one - lawyer, widow, and even daughter, friend, and auntie.
What do I think of when I picture what "home" is? In the past, it has always conjured up visions of a physical structure, one where my possession are housed, where I go to lay my head at night. But, I have moved so many times since leaving my family for college that I began to question whether it could possibly be the actual brick and mortar that made me feel like I was home. With a few exceptions, I have moved almost every year for the past 17 years, and I certainly have not spent that entire time feeling homeless. If not the structure itself, was it the stuff inside? Well no, that couldn't be it either, because I am constantly acquiring and getting rid of things and I have but a few items left from even several years ago let alone my childhood.
When I started doing some casual research on the subject of home, familiar themes popped up. "A home is a foundation; a place where everything begins." "Home is a safe haven and a comfort zone." "Home is a place where we can truly be ourselves." There were, of course, other ideas that were more directly tied to the concept of a "house" rather than a "home" (i.e. "A home is a place where we build memories as well as future wealth"), but I was more interested in the responses that evoked feelings rather than facts because I have established that, at least for me, home is not the building I live in, nor the things I put inside.
What words do I associate with home? Safe. Comfortable. Peaceful. Warm. Calm. Love. Love - yes, maybe that is what it is all about. As a child, I envisioned my home being where my family was. More recently, it was where my late husband Patrick was. But what about all of the years that I lived alone, or with roommates whom I had no relationship with apart from our physical proximity to one another? I don't remember having a constant feeling of being without a home in those situations. Actually, it was quite the contrary when I lived alone - those years were some of the most grounded I have ever felt.
Another one of the words that popped up frequently in my search was "stable." I constantly saw people talking about how their lives were going to unfold, from vacations they would take to families they would start, once they had a "stable home." According to the Merriam-Webster dictionary, "stability" is defined as "the property of a body that causes it when disturbed from a condition of equilibrium or steady motion to develop forces or moments that restore the original condition." So, it would seem that many people regard home as something that is unchanging and reliable; something we can count on to stay the same, regardless of the circumstances life throws at us. Right there, it should be obvious that this concept of home is a dangerous one, because there is no way to secure life with a safety pin at any point, tethered in time to remain unaltered. As soon as something unexpected occurs, in this scenario the sense of security that home brought would be violently yanked away leaving the person again drifting aimlessly through space. This idea of home is nothing but an illusion, because it assumes that things cannot, will not, and should not change.
I was recently in San Diego for my annual trip where I visit friends and celebrate another year sober. (This time it was ten years, which still blows me away. I know what an absolute miracle it is, and I don't take it for granted anymore.) While I was there, I spoke about my process of letting go of attachment to the different roles I have engendered for myself, and just how hard -- but how freeing -- it has been. A close friend of mine commented that she does not have attachment to her job in the way I did, but that instead her attachment was to her family. I cringed a little when I heard this, beautiful as the intention behind it may have been. What happens if the family unit falls apart at some stage, or a relationship is irreparably damaged? What happens when (not if) members of the family die? Who are you going to be when your husband gets ill, or even when your children are grown and leave the house? Will your sense of home be gutted as well?
Also during my visit, another friend was packing up and getting ready to sell her house. Her husband mentioned to her that the change would be hard, as this was the place where they had all three of their young children; where they took their first steps, formed their first memories, and started becoming tiny people. Having moved out of my childhood house after my freshman year in college, I recalled my own experience with this painful process. I was completely devastated at the time, and angry at my parents for making a decision to leave. I thought, "You can put all of our stuff into some new place, but it will NEVER be home." Now, of course, it has been 16 years since that move and the house they now live in unquestionably has all the feelings that our first house did.
The hardest detachment from "home" that I have ever experienced was when I was forced to move out of the apartment where I lived with Patrick. It was not only where we had built a life together, but it was also where we had gotten married, where I cared for him during his blisteringly painful experience with brain cancer, and, most importantly, where he died. I felt like I was somehow betraying him in leaving, but minus his substantial income and the disgustingly high rent in the Bay Area, I was no longer able to afford to stay. I remember tears streaming down my face as I packed not only our things but the hope of our future into countless boxes. I had to have a loving friend come and take the things of Patrick's to be donated, because I could not stand the thought of watching someone carelessly unload what I had come to view as our lives into a dusty bin to be redistributed. It certainly did not feel like just "stuff." It felt like memories being stripped away from me, replaced by fear that someday it would be as if this part of my life never actually happened.
When I left Northern California in November of last year, I expected my stay with family to be short - maybe a month or two. So, I put all of my worldly possessions inside a 10x15 foot storage unit which is completely full from floor to ceiling with stuff, all of which at some point seemed incredibly important. The largest items are the couch and living room tables that belonged to Patrick. When he was sick, we rarely talked about how it would all end, but one day he looked at me with tears in his eyes and said "I want you to have the sofa." We held each other and cried, as this was his first real acknowledgment of his mortality and the fact that the end of his life was drawing near. Patrick spent almost all of the days he was sick on that sofa, aside from the times he was in the hospital. It was where we laughed, where we cried, where we loved - and my attachment to that piece of furniture has been real. It was symbolic of our love story, of his death, and of my own journey back from the devastation of his loss. Much like when I gave away many of his clothes, I was afraid that letting go of the couch would be like losing him all over again.
For the last few years I have been believing my own delusion that I will again have a home once I move into a place with that sacred sofa. I have been grasping to hold onto a life that no longer exists by holding on to the things that represent that life. What I have refused to see is that no matter where I put that couch, Patrick will never again sit on it. We will not laugh together watching "Elf" at Christmastime. I will not find him lounging there with the Warriors game paused because he knows I don't want to miss a minute. By continually dragging the evidence of our lives with me wherever I go, I am actually causing more harm to myself than good because it allows me to continue relying on people, places and things to give me a false sense of security.
So if it's not the stuff, the people, the actual building, what - and where - is home to be? The answer, for me, is as surprising as it is painfully obvious. The only place that home can possibly exist is within myself. It is the quiet, peaceful place where my soul can rest comfortably no matter where I am. It relies on no one, on nothing, to be okay. It is not dependent on having even basic physical or emotional needs met. Home asks nothing of me, least of all the impossible request that the facts of my life remain unchanged. It needs no specific location, or even roots at all. It is not rattled by wandering the planet without a fixed address, because it does not demand one. Perhaps most importantly, it does not need anyone else to play a part in my story, and it exists whether others come or go. All it needs is me.
It turns out that home is, in fact, where the heart is.
I am hereby calling out all the garbage I have been seeing on social media and in the news regarding mental illness and suicide. Why? Because it's ignorant, misinformed, and downright dangerous for people who this very moment might be contemplating ending their lives.
When news broke about fashion designer Kate Spade committing suicide yesterday, so did my heart. As someone who has dealt with mental health problems and has gone through prolonged periods contemplating my own end in this way, I knew how dark it must have been for her. I don't ever pretend to know exactly how someone feels, whether they are happy, sad, or any other emotion, but I certainly can empathize with feeling like there is no way out. In those times, for me, I believed that the pain I was drowning in would never end. My dreams had been dashed. It was like someone had set fire to the roadmap I had drawn for my future. I could not see how my life would ever be okay. Suicide seemed not just like the most favorable option - it often felt like the only option.
I have been through several dismal epochs that evoked suicidal ideation, the most recent of which followed the death of my beloved husband Patrick to brain cancer in 2015. I was diagnosed with PTSD six months after he died after suffering from severe depression, panic attacks, extreme avoidant behavior of people and places that reminded me of him and his illness, nightmares, and reliving his death and the days leading up to it as flashbacks. These were only some of the symptoms I was dealing with related to my mental health. On the physical side, my chronic pain was inflamed so severely that I underwent surgery on my elbow and my back in 2016, with several other operations recommended; I was diagnosed with rheumatoid arthritis; I had serious migraines almost daily. You get the picture. Oh, and my cat died of cancer. Throw some salt on the wound, why don't you.
I was not at all in denial of the severity of what I was going through. I had been in therapy weekly since two weeks before Patrick's death. I was active the recovery program that had helped me maintain my sobriety for many years. I sought spiritual counsel whenever and wherever I could. For a long time, I was on medication for anxiety and depression. I was engaged in every possible activity that I could think of to treat my mental and physical illnesses. I had the love and support of my friends and family. I had a good job as a lawyer and I was trying so very hard to be okay.
And yet, every single day I wanted to kill myself.
In the day and a half since the news about Ms. Spade broke, I have been hearing the ever-so-convenient narratives that suicide is the most selfish act one can possibly do; that it comes from a place of not caring about your loved ones; that it is somehow a moral failing by someone who is bereft of God; et cetera, et cetera. I feel a genuine rage brewing inside of me every time I see one of these ill-conceived anecdotes. While I cannot speak for the departed and have no delusion that I can vouch for everyone with mental illness who has been visited by these thoughts, in my experience there is absolutely nothing selfish about suicide. It is, in fact, the complete opposite. While I knew that the people in my life would experience sadness and loss, I truly believed that they and the rest of the world would move on and be better off without me. I felt like a terrible burden. I was ashamed of my constant struggle in and out of bouts of depression. I was embarrassed that I had to repeatedly go on short-term disability because I could not keep up with the rigors of my job. I looked at the mass of financial debt from my student loans and saw no way out, particularly given my inability to consistently work. In my mind, suicide would not have been an act of selfishness, but instead an act of desperation, with no other motive other than making the pain end.
The other frustrating part of this news cycle is the immediate need to find someone to blame. Reports are coming out that she and her husband had been planning to file for divorce. Critics are immediately theorizing that her husband mistreated her, or somehow drove her to this. I believe this is another terrible side effect of our death-phobic society, namely that we always have to pin liability on someone when there is a tragedy. I get it, because I did it when Patrick died. I blamed myself for not getting him into a clinical trial, for not noticing signs of illness sooner, for honoring his request to stop treatment when he decided he'd had enough. The truth is, however it arrives, death eventually comes for us all. We would do a lot better to recognize the tremendous shock and loss that her family is going through than to entertain our sick and useless instincts to assign fault. Blaming her husband is no more true or useful than blaming her.
When someone is injured in a car accident or has been diagnosed with cancer, most people are quick to offer condolences and help. Not so with often invisible mental illness. If one is brave enough to admit such suffering, she is often met with blank stares, awkward silence, and changing the subject. We are told to stop wallowing in our grief. It is suggested that all we have to do is exert our willpower, and - POOF! - all will be fine. We are not able to take time off of work to heal because of deadlines and quotas. Most people don't know where to go to get help. People who are in marginalized and under-served communities have no resources for mental health because it is one of the least prioritized medical issues. Although there have been some improvements over the years, the stigma about mental illness strongly persists. Then, someone commits suicide and we are all shocked. There is no understanding that the person was sick. Instead, people speak in hushed tones at the funeral, speculating about who is responsible instead of celebrating the life of someone who was invariably so much more than the way she died.
To those of you who have not been touched directly by mental illness, consider yourself fortunate because almost everyone has at least some attenuated connection. Instead of obsessing over the details of someone's suicide, try to exercise compassion for everyone involved. Hold space for the pain of those who are grieving.
If you are struggling with thoughts of suicide, please consider reaching out for help. Call the National Suicide Prevention Lifeline at 1-800-273-8255. Most importantly, know that you are not alone. I have been within seconds and inches of ending it all, and I consider it mostly luck that my fate has so far turned out differently. It is never too late to get help, until it is.
My heart goes out to Ms. Spade's husband, daughter, family, and all those who loved her.
Have you ever had a moment where all of a sudden, the chaos of your life quiets and everything is perfectly calm? As if you've been given a glimpse through a window that previously was made of opaque, frosted glass, but without warning is now crystal clear? I haven't had many of those moments, but when I have they have changed the course of my life in drastic ways. As I write this, it's happening, and it feels too important to keep to myself.
I have written a lot about the pain of my life experiences - getting sober; the constant trials of an eating disorder; falling deeply in love and then losing my husband after his brutal battle with brain cancer; leaving my chosen profession as an attorney because it felt so unaligned with my soul's purpose; humbling myself as I stood on the brink of financial ruin; and letting go of my attachment to who I thought I was in order to discover and fully embrace who I am. It has often felt like I am dragging myself face-first through the mud, fingers bleeding, dirty, lonely, and broken. I have felt so lost, carrying the constant weight of having and endless abundance of love and healing to share but with nowhere to direct it.
There has never been any question that my own suffering would somehow be transformed into a powerful message of hope and redemption that can help others navigate their own trials. I have firmly believed that I am on a journey to turn my pain into purpose - so much so that this is tattooed on my skin! - but I couldn't see past the immediate physical and emotional misery enough to feel the warm light on my skin that is provided by complete surrender of one's will to the Universe.
I am not ready to talk publicly about the specifics of what I see for the future. Honestly, the details are not even important - details change all the time, and to obsess over them would be taking this divinely inspired message hostage and asserting my will over the outcome. Maybe it will materialize exactly how I am picturing it. Maybe it won't. For once, it doesn't matter to me. What is important is what is happening in this moment, and that is what I want to share.
I am fully present in my body.
I feel like my heart is bursting.
I have deep reverence for every one of the scars on my heart because they will allow me to change the way others approach their own suffering.
I respect my human form, and look at it with immense gratitude for carrying me in spite of the abuse it has been subjected to in various forms for many, many years.
I honor the perceived imperfections of my physical appearance, from the wrinkles on my forehead to the extra weight that doesn't seem to want to leave my waistline, because they are serving a purpose that I may not yet understand.
I am not afraid of what will, or what won't, happen.
I don't care if my life looks "successful" by conventional American standards.
My heart is open to moving forward and receiving love in whatever form that takes, with the unmitigated understanding of the risks involved.
I am allowed to dream bigger than what seems possible, because I am capable of handling anything that is thrown at me.
I can heed the call to a higher purpose because the Universe will provide me with what I need, which may or may not be what I think I want.
I don't have to ask myself or others "Is this weird?" when I am getting direct guidance from God, because I have learned to trust that I am not being steered anywhere that will cause me harm.
I don't have to understand why everything happens, or obsess over making sense out of it all.
I have been being prepared to take this seemingly drastic turn in my life for years, and it has taken every one of the events that I thought might kill me to make this possible.
Now, I am completely aware that I have not somehow evolved past the point of crippling self-doubt that will inevitably attempt to derail me. I am far too familiar with my tendency to sabotage myself when things get scary to believe that magically this has been removed. I also know that the subconscious mind hates change and I will (not may) struggle as I begin this new walk. But today, I have been given a reprieve from the incessant inner critic. Instead, I hear the voice of a confident, talented, loving woman encouraging me to breathe into this moment of peace that has been a long time coming. She is louder than any other noise I hear, or any distraction I feel. And she's here to stay.
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.