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.
"I miss you so much," I whispered, tears streaming down my face.
"I know," he said gently.
"It has been really hard for me without you."
He paused, and while lightly squeezing my hand, said "It doesn't have to be."
This was the actual dialogue between me and my late husband Patrick that happened during the first dream where he visited me since he died. I woke up abruptly, grabbed my phone, and wrote it all down. It was 2:26 A.M., just two months ago. I don't remember many details of the dream, but I continued my note and wrote: "There is a deep knowing on his part of how I have suffered. He has an intense desire to communicate that I don't have to live this pain anymore. He wants to free me from the guilt associated with moving forward."
The concept of "survivor's guilt" is something that I thought applied only to events like car crashes or natural disasters. According to Wikipedia, survivor's guilt is "a mental condition that occurs when a person believes they have done something wrong by surviving a traumatic event when others did not." I did not know that this could apply to living through the trauma of my husband's brain cancer and death. Of course, I also did not know that these events would lead to my diagnosis with post traumatic stress disorder - and apparently survivor's guilt is defined as a significant symptom of PTSD. This was just one of the many unexpected consequences that appeared in the fallout after Patrick died, but it has been one of the most difficult to manage.
I have talked a little about my experience with the guilt only those left behind will feel in my earlier posts. But, since it has become one of the most pervasive leftovers of the grieving process, it seemed important enough to spend some time delving into.
I spent years putting Patrick on a pedestal before he got sick, so when he became ill, all I could think was that Patrick was a better person than me. He spent his life serving others in our recovery fellowship and literally saving people from the brink of death. He had two beautiful children who were his world, and he was theirs. He was handsome. He was funny. He was in impeccably good shape for any age, let alone a man of 54. His biggest vice was the obscene amount of Irish cream he put in his coffee every day. Why would he, of all people, be delivered the grave news that he had glioblastoma, the worst type of brain cancer with a survival rate that all but guaranteed he would miss out on what could have been the best years of his life? Why should he have to suffer the indignity of slowly losing his ability to take care of even his most basic needs, all while spending much of his remaining time unable to communicate due to the aphasia caused by his tumor?
I cannot tell you how many of my waking hours were spent wishing that I could trade places with Patrick. I wanted to take away his suffering. If I could have, I would have gladly made it my own. I think that part of the reason why I took it upon myself to be his care partner, and to be at his side without fail through every day of his illness, is that at some level I believed that I was the one who deserved to be sick. For all of my adolescence and adult life, I have dealt with depression, anxiety, and a multitude of addictions. Before Patrick, I made terrible choices in romantic relationships. My first real boyfriend was a violent, practicing (as opposed to sober) alcoholic and our relationship ended in a restraining order. I thought I was destined for my happily-ever-after with my second boyfriend, but unfortunately he spent as much time romancing other women as he did wooing me. Despite graduating second in my class from law school and making a good amount of money as a litigator, I truly felt I had nothing to show for my career choices besides chronic migraines and a mountain of debt. I did not have any children. I did not see any significant mark I had left on the world.
Shouldn't it be me?
It didn't make any sense. And for me, with the eternal just-figure-it-out lawyer mind, it had to make sense. I felt like I could make it right by fixing him. Patrick would be the miracle, I told myself. I just had to do my part, which was to be his advocate, get him the very best medical treatment, and love him every step of the way. It would be like my penance for all of the crappy things I had done in my life. I repeatedly promised God that if he would make Patrick whole again, I would be as good of a person as he was. Patrick would survive, and things would go back to normal.
But he didn't. He died.
Beyond the normal grief of losing the love of my life, I was completely wrought with the shame of not doing my part. I didn't "fix" him. I thought of a million scenarios where things might have turned out differently. Maybe if I had insisted that he have a CT scan or MRI at the hospital when he was diagnosed with vertigo, three months before the seizure that led to his GBM diagnosis... Maybe if I had gotten him to UCSF sooner... Maybe if I had found the right clinical trial... Maybe if I had forced him to continue treatment when he decided he had had enough... maybe, maybe, maybe.
I tortured myself with these "maybe's" for a long time. The logical side of me knew that the real cause of Patrick's death was the catastrophically aggressive tumor, which I could have had nothing to do with causing. But try talking logically to a person who is in the throes of grief and see how far it gets you. All I knew was that the scales were not evened, and that I did not want to be left behind. I wished that death would come find me and take me back to him. I did not deserve to make it, if he didn't.
It was not until much later that I realized there is no "good person" exception for life's tragedies. There is no grand tally board keeping score, determining that if you just do the right things you will be immune from catastrophe. I found tremendous solace in the book "When Bad Things Happen to Good People" by Rabbi Harold Kushner. Kushner had lost his young son to a cruel disease and found himself struggling with his faith during the grieving process. In an article describing the book, Kushner writes "God does not cause our misfortunes. Some are caused by bad luck, some are caused by bad people, and some are simply an inevitable consequence of our being human and being mortal, living in a world of inflexible natural laws. The painful things that happen to us are not punishments for our misbehavior, nor are they in any way part of some grand design on God's part. Because the tragedy is not God's will, we need not feel hurt or betrayed by God when tragedy strikes. We can turn to Him for help in overcoming it, precisely because we can tell ourselves that God is as outraged by it as we are." (Read the full article here.)
The notion that God was as upset by what happened to Patrick as I was helped me in extraordinary ways. I could not do business with a God that allowed him to suffer while letting me walk free, or worse, caused his suffering. Instead, I could work with a God that grieved with me, and wanted to help me survive my own pain. This may be offensive to people who live by the platitude of "Everything happens for a reason," but it worked for me. I don't actually believe everything happens for a reason, or at least a good one. Sometimes, shitty things happen to the best possible human beings. This has been one of the most important lessons for me, and one that has gradually lifted the weight of feeling both responsible for Patrick's death and guilty for still being here.
Just like there is no grand tally for the living, there is no score being kept on how well you grieve. It is not true that finding moments of happiness means you are a bad person, or that you did not truly love the one you've lost. Some of the worst pain of my grieving has come immediately after enjoying myself, when the guilt is so thick that it feels like it is dripping from my pores. It comes from that same place the "maybe's" live, and it isn't helping anyone, or making my score higher. And, newsflash to self: being miserable will not bring Patrick back.
Earlier this week I drove up to the Bay Area, both where I grew up and where my love story with Patrick took place. I had been avoiding the area of town where Patrick and I lived, got married, and where he died, ever since I had moved out. Every time I had gone near it I would be overwhelmed by massive anxiety which more than once developed into a full-blown panic attack. This avoidant behavior is typical for PTSD, and I was not interested in tempting fate. But, throughout the four-hour drive, I kept getting the distinct feeling that I needed to go to the place we were married. I tried ignoring it, but it got stronger and stronger the closer I got. Since I have been trying to practice following my intuition in the course of my healing, I decided to heed the call, even though I was so afraid of what would happen.
As I entered the driveway of the apartment complex, I looked straight at the bridge over the pond where we held our wedding. The weeping willow tree which served as our backdrop was as brilliantly green as it was that beautiful day in 2015. I parked my car and slowly walked the pathway onto the bridge, where I stopped. I closed my eyes, struck by a wave of memories, but there was no panic. I remembered the look on Patrick's face when he saw me on that bridge that day. I remembered looking out at our family and friends as we vowed to love each other forever. I felt pulled to keep walking, to visit the home where we said goodbye. I stood outside the door and stared, my breath catching in my throat. I sat on the stoop and closed my eyes again. I remembered it all. Laughing and running hand-in-hand to the car. Excitedly hurrying to the apartment at the end of the workday because I could not wait to see him. Watching him pull up in his fancy new BMW which he assured me was not the result of a mid-life crisis. And later, pushing him outside in the wheelchair once he was no longer able to walk to make sure he got some fresh air every day. Bathing him. Feeding him. Holding him as the life left him. Loving him, loving us.
In that moment, I felt Patrick's presence as strongly as I have since he's been gone. I felt us. And then, a soothing but firm voice said, "Okay Lisa. It's done. It's over now. You're going to be okay."
I was taken aback by the significance of the moment. I gathered myself and I stood. As I walked away, I felt lighter than I had in years, still choking back tears. I got in the car and one the songs I used to sing to Patrick when he was sick was playing on the radio. I got to an appointment and when I walked in, another of our songs echoed through the waiting room. There were endless reminders that day, releasing me gently back on my own.
I know that Patrick wants me to be happy. He has given me permission to let go of my guilt and to build whatever kind of life brings me joy and meaning. I now have my own permission. And it's time for me to live.
It was three years ago today that Patrick asked me to marry him.
We were in his hospital room. He was laying in bed, and I occupied my regular spot beside him. While so often Patrick was plagued with confusion and anger from the highly malignant tumor growing in his brain, this was a good day. He was as clear as he had ever been since the last day before the seizure that changed our lives forever.
"Will you do me a favor?" he asked.
"Of course," I replied.
Patrick looked up at me with the sweetest expression, full of love and hope. "Will you marry me?"
My eyes immediately welled with tears. I said yes. We cried together. My next thought was, "I hope he remembers this!" Luckily, he did. We were married two months later on 5/24/2015. He took his final breath on 7/11/2015.
When you lose someone, there are so many anniversaries of happy moments: birthdays, when you met, engagement, marriage. When that loss involves a chronic illness, there are a lot of painful ones, too: first seizure, date of diagnosis, brain surgery, when hospice was brought in. After more than two and a half years, I often wonder if I will ever forget any of these dates, good or bad. So far, they are all still etched in my memory. Each time one arrives, an ache in my heart is ignited that burns as deeply as ever.
This morning I was going through my phone to write down all the notes I have jotted down since Patrick died, many of which involve specific encounters with him. There have been a lot of them. (Ask me about the time when he called me two months after he passed away. No, I am not kidding. There was a witness!) I came across something that I wrote while on a flight to San Diego last year, when I had a moment of clarity and gratitude for all that our love and his loss has taught me. It feels like the right day to share, so here it is:
"If today was my day, I would be fine with that. I have lived a good life. I have done what I believe God would want me to do. I have loved deeply and known that love in return. I don't know what more I can ask, actually. I understand the word serenity and I do know peace. In this very moment, I have peace.
I thank you, God, for my life today. I thank you for the incredible blessing that was Patrick. He changed me forever. He believed I was funny, and smart, and beautiful - and he told me every single day. He believed in me and saw things in me that I didn't even know existed, and I may have never seen them if he hadn't told me. We had our issues but I never doubted how much he loved me. What a gift.
Today it is my job to tell myself those things that Patrick told me: that I'm intelligent, and capable, and worthy of being loved. He believed all of that so honestly and wholeheartedly, and I trusted him so much, that I hope if I keep trying I will believe it someday. Patrick was a very sharp guy. He had to be on to something.
I am not being punished. I am not a bad person. I am a good person who had a terrible thing happen. Because of that, I know there will be good again in my life. Patrick would have it no other way. I have no doubt he is up there putting in a good word for me.
For a long time I thought that this wasn't what I signed up for. But you know what - it is exactly what I signed up for. No one ever told me my life would get perfect by getting sober and doing my best to live in alignment with the spiritual principles of recovery. Now, I may have heard differently, or expected differently, but what they told me was that it would get different. They said I would be given a set of tools that would allow me to deal with life on life's terms with some degree of dignity and grace. Precisely to what degree that is depends directly on whether I am living in fear or in faith.
There have always been things I just knew I couldn't stay sober through. One of them was getting married. I did. Probably the biggest was losing a spouse. I mean, I wouldn't blame myself if I drank over this. But I don't have to. There has never been a question in my mind that drinking was not going to help me here. That doesn't mean I have sat on some spiritual cloud - quite the opposite, I sat in my bed watching "The Real Housewives" and eating my feelings for months. But I haven't wanted to drink. If I didn't believe in miracles before, I have to with that one.
Give it back. Say yes. Show others that they, too, can survive the trials they face. Help as much as possible, as often as possible. The day they throw the dirt on me, I want to have cultivated a beautiful garden of a life so that when I see Patrick on the other side, the first thing I can say is "I have so much to show you" and know that he will be proud of what he is about to see. And so will I.
Maybe it doesn't get better. Maybe we get better."
About a year after Patrick died, I had my rings resized to wear on my right hand. Most of the time, I don't wear my engagement ring. Today is different. Today, I'm still his and he's still mine.
There is a lot I wish I had known about grief before having to learn the hard way.
Everyone has experienced different degrees of loss in their lives, whether it is a significant relationship that ended via divorce/break-up/death, a dream job that turned out to be not so dreamy, or having to sell the house you always wanted because of a personal financial downturn. One of the most significant lessons I have learned in my life is that every change is a loss, and every loss brings grief. Grief is not an experience reserved for the loss of human life, though this is of course what society normally associates with grief. This also seems to be the only experience that we are given some latitude to grieve, and even then, we place arbitrary timelines and "stages" on the experience so that we can wrap it all in a nice little bow and put it away when we decide that the boxes have been checked.
Before losing my husband Patrick to brain cancer, I had gone through various losses in my life, like we all do - grandparents, family friends, etc. Based on those experiences, I believed in the American model of grieving, namely that you go through five distinct stages (denial, anger, bargaining, depression, and acceptance) for about a year, after which you move on with your life. I had very little else to base my knowledge of grief on. I don't know about you, but growing up no one talked about grief, except in those hushed conversations next to the tuna casserole at a memorial service where people speculated about how the immediate family was doing. The idea of actually discussing grief with those family members was considered taboo and inappropriate. I learned that talking about it would just make it worse for them, and I didn't want to be the jerk who was causing someone even more pain. So, when in those situations I would just awkwardly hug the grieving person, spout platitudes like "I'm sorry for your loss," and hurry back to my paper plate of hors d'oeuvres.
Naturally, when Patrick died, I expected to go through approximately one year of hell before emerging and getting "back to normal." As anticipated, every event of that first year was painful and draining, but it was survivable based on my belief that all the firsts would be the hardest and then I would be okay. I was able to continue working as a litigator because the law firm was tolerant of my inability to hit my billable hour quota. People looked at me with concern, squeezed my arm, and told me everything happened for a reason. (I could get into an entire post on how much I hate those overused, B.S. statements, but I'll leave it for now.) I knew that it was okay to feel terrible, that this was "normal," and that it would all be over soon.
I mentally approached the one-year anniversary of Patrick's death with both dread and hope, almost like I was about to graduate from grieving school. I had done everything that had been asked of me in therapy. I had continued to show up in my recovery support groups and stayed sober. I was convinced that fearlessly facing my pain would be the price of admission back to my life before everything went so horribly wrong. It was as bad as I had ever felt in my life, but the relief I was praying for would come soon, right?
Wrong. So, so wrong.
That first anniversary came and went. The anticipation of a respite from the agonizing emotional and spiritual pain was almost palpable at times. I waited for it to come. And waited. And waited some more. About a month later, I finally learned the truth: grief looks nothing like what I thought it would. It is not linear. There are not distinct stages. Even if we do experience each "stage," which I did, passing through them once does not mean we can simply check them off our list and move on to the next. And we definitely do not graduate from the experience because a year, or any other made-up time frame, has passed.
Finding out that my outline for grieving was completely false was terrifying. I began to fear that since I missed my self-imposed deadline for getting better, I would simply live in that pain forever. I would never be okay. As a result, that second year was, in a lot of ways, even worse than the first. In addition to the feelings of depression, angst, fury, and every other negative emotion you can imagine, I no longer had hope that it would change. As a result, this was when my behavior became really self-destructive. Although I maintained my sobriety, I tried to anesthetize myself in any way I could, including spending a ton of money I didn't have, alternating between eating ALL. THE. THINGS. and strict "discipline" (read: deprivation) which ignited my long history of disordered eating, and numbing out binge watching terrible reality shows instead of interacting with other human beings. It was bad.
It wasn't just me, though, who thought I should be "better" after a year. My bosses lost patience with my inability to keep up with the minimum billable hour requirements, evidenced by the passive aggressive sad faced emoji which began to regularly appear on my monthly billing report. I started feeling like the people in my life were done hearing about my grief, which may or may not have been the case, but it was enough that I started answering "I'm fine" when people asked if I was okay rather than telling the truth. I could not stand feeling like I was being inauthentic, so I withdrew more and more from my relationships rather than lying about what was really going on. I thought I was protecting myself from getting hurt, or hurting the people I loved, by closing off my heart. I did not want to make anyone uncomfortable with the fact that I was not okay.
No one told me that once I had worked through the initial grief of losing Patrick, there would be a separate, equally painful grieving process for the life I thought I was going to have. I had to say goodbye to the idea of me and Patrick as a power couple, buying a great house, starting a family, and taking on the world together. We will never go on that trip we planned to tour his family’s roots in Ireland and where I lived in Italy. We will not walk hand-in-hand down Cannery Row in Monterey each year on our anniversary. I had to acknowledge the reality that not only is Patrick gone but so, too, is each of these plans for our lives. Sometimes I will go for weeks feeling okay until some previously repressed memory, or plan, or whatever will pop up that feels like I’ve just been punched in the stomach. Every time this happens, I have to allow more space to grieve.
One of the most shocking lessons I have learned about grief is that feeling good can be just as difficult as feeling bad. There was a part of me that felt extremely guilty when I started feeling better. I kept hearing that the pain of grief was the price paid for love, so it seemed like a betrayal of that love to feel anything other than agony. I watched myself take steps forward only to sabotage my own efforts because it felt wrong to be happy. I didn’t know that was “normal,” too. I just thought I was going crazy.
The experience I have with grief has repeatedly led me back to this question: Why is it so hard for us to talk about death and grieving when it is literally one of the only human experiences that we all have in common? The facts of our lives will vary person to person, but we will all deal with death and dying. Why do we pretend like we are somehow going to be immune? Do we ostracize people who are grieving, either intentionally or unintentionally, for no better reason than to deny our own mortality?
I have concluded that, in general, our culture sucks at dealing with death and dying. I don't see the point in trying to make it sound more elegant than that. As a result, we cause problems in all kinds of ways. We don't get wills or trusts drawn up because we think we are too young, or we don't have any money to worry about. We don't talk about our wishes should something happen, so when (not if) something does, the burden of difficult decisions is placed on the shoulders of our loved ones. This often leads to fighting among the decision makers who cannot separate what they would want for themselves from what they think we would want. It can lead to nasty arguments about who the decision maker should actually be which can, and in our case did, increase the trauma of an already painful situation.
I am not naive. I know it would require a major cultural shift to start talking about death and dying openly. That does not mean, however, that I have to perpetuate the custom of silence on this issue. I believe the process of grieving Patrick, while it would have always been terrible, would have been less frightening if someone had told me that the journey would be entirely unique to me, and that no one could accurately predict its course or duration.
It should be noted, too, that it might be the case that a year actually is what you need to grieve a loss in your life. Or maybe it's less. That doesn't mean you're not doing it right, or that something is wrong with you. The point is that grief is so deeply personal that no one can tell you what it's going to look like. The best thing that we can do is allow ourselves to feel exactly how we feel. We can give ourselves permission to completely ignore the well-intentioned people in our lives who tell us how to "feel better." We don't have to feel guilty and compare our situation to others, qualifying every one of our feelings with "Yeah, but it could be worse." It can always be worse - that does not mean that our feelings aren't valid and worthy of giving them the time to process.
If you have suffered a loss, I hereby give you permission to take whatever time you need, by whatever means necessary, to grieve. Be angry. Allow yourself to feel pain and joy simultaneously. Scream. Eat the sheet cake. Just please, keep going, because it will change. I cannot promise that life will ever look like it used to before your loss – mine doesn’t. But it won’t always be so dark.
If someone in your life is grieving, tell them you love them instead of telling them what to do.
When someone is diagnosed with a deadly illness, I think we can all agree that the only focus should be on the patient and ensuring they receive the best care possible. The fight should be against the disease, not corporate bureaucracy.
When my late husband Patrick landed in the hospital after his first seizure, we had no idea what we were in for. Aside from absolute ignorance of the disease of glioblastoma, we were about to face what was sometimes equally daunting: Patrick's insurance company. At the time of Patrick's diagnosis, I was in my fifth year as an insurance defense attorney. I had practiced in various fields (medical malpractice, insurance coverage, personal injury, workers' comp, etc.) so I was well-versed in insurance company policies and objectives. I knew that denying requests for treatment was par for the course and that most of my job was essentially saying "no." I was aware that keeping costs as low as possible was incentivized for claims adjusters. Even with all this first-hand knowledge, it never occurred to me that the corporate behemoth would apply this model to someone battling a brain tumor with a five-year survival rate of around 5%. No, the insurance company would do right by him... wouldn't they?
Just three short months before Patrick's seizure that eventually led to his GBM diagnosis, I woke up one Sunday morning to find him sweating with his head between his knees on the edge of the bed. His face was ghost-white. He was barely able to speak, but was able to get out that he was dizzy. I tried to help him stand up and he stumbled to the ground. I was terrified. I asked if I should call 911, and became even more alarmed when he said yes. That was the first of what would be innumerable ambulance rides, with me following closely behind in my car and frantically calling family on the way.
When we got to the ER, Patrick's symptoms seemed to have subsided somewhat. He continued to have severe dizziness when he leaned his head back or forward, but his cheeks had started to redden and he was not perspiring so much. They did basic blood tests and when those came back normal, although there was absolutely no explanation of what happened, the doctors simply diagnosed him with vertigo and sent him home with a prescription for Meclizine, which is essentially an over-the-counter medication to treat motion sickness. They did no CT scan, MRI, or any other diagnostic study to find out what caused his symptoms. If they had, I suspect that they would have found the lesion that would be diagnosed as GBM soon thereafter, and realized that he was actually experiencing a focal seizure. But no - this time, they shooed us out as quickly as possible, and I did not even realize that I could insist on more being done.
Patrick was a life-long Kaiser member, so that was where he was first taken to the hospital in 9/2014 when he had his first grand mal seizure. As I shared in an earlier post ("From Disaster to Tragedy"), his initial hospital trip resulted in a 72-hour medically induced coma to stop the seizures. At that time, the doctors collaborated and decided that what they were seeing on the MRI was not a tumor and sent him home directly from the ICU after four days. Less than a week later, he returned in another ambulance and this time a tumor was clearly spotted. We were told that he would need to be immediately scheduled for brain surgery at another Kaiser campus in the Bay Area to remove the tumor. And so it began.
Because of Patrick's psychotic episodes following his seizures, Kaiser's best idea for treatment was tying him down like an animal on his hospital bed and sedating him to the brink of unconsciousness. It was absolutely barbaric. On one occasion, his blood pressure dropped so low that it nearly killed him. Had I not been sitting at his bedside constantly observing the beeping of the monitors, it probably would have. I watched his numbers plummet and ran to his nurse, requesting immediate assistance. I was brushed off but I did not back down, demanding she come look. She looked at me, clearly irritated, before following me back to his room. When she looked at the monitors, her eyes widened, and she ran for the doctor who hurried in and halved the dose of the sedative. They all stayed close for the next few minutes while Patrick's pulse and blood pressure returned to normal.
I was not without sympathy for the nurses, doctors, or anyone within earshot of Patrick's room during his episodes. He was extremely loud, violent, and as strong as the incredible hulk. I remember when he bent the metal rail on his hospital bed like it was made of clay after waking up in restraints. After he broke the bed, they brought in a replacement, and I watched three large male staff try to force the bent rail back into place to no avail. (Patrick was quite proud of the picture of the bent frame that I took. It was his favorite conversation piece with visitors.)
It was after the near-death episode with Patrick's blood pressure that I knew that we had to get Patrick out of Kaiser. They refused to start his radiation until the seizures were under control, and no matter what combination of medications they tried, he continued to have them. This was when I started requesting that Patrick be transferred to UC San Francisco, only 30 minutes away and one of the leading facilities in the country in treating brain tumors. I was convinced that the doctors at UCSF could either figure out how to stop the seizures, or at least start his radiation while they tried. Even with what little I knew about GBM at the time, I was aware that a delay in starting his radiation would make a quick recurrence all the more likely, and I did not want to take any chances.
Even Patrick's care team was in agreement that they could not help him and recommended sending him to UCSF. The insurance end of Kaiser, however, refused to allow Patrick to transfer, telling me that they would only pay of out-of-network treatment if there was some specific type of treatment or care that Patrick needed that Kaiser could not provide at their facilities. This was the first of many experiences where Patrick's doctors and I conspired on how to get the care he needed provided by his insurance company. His Kaiser doctor said that UCSF would have the ability to hook Patrick up to a continuous EEG machine to monitor his seizure activity, but there was another Kaiser facility in the Bay Area that had that type of machine. Patrick was shipped off to that location where he remained for another week, enduring the same cruel and inhumane treatment all the while.
This was the third occasion where Kaiser hospitalized Patrick for at least eight days and discharged him in "stable" condition only to have him return after another seizure within 48 hours. I had had enough. I sat down and wrote a letter to Kaiser chronologically laying out Patrick's sub-par treatment course. I used every single legal buzz word in my arsenal, from "bad faith denial" to "gross negligence," to lay out my case for Kaiser approving his transfer to UCSF. It finally worked, and within 6 hours of giving the hospital the letter, Patrick was on a waiting list for a bed at UCSF.
After three days on the list, a social worker came in and told me that Patrick could not get approved for the bed at UCSF because he had no insurance. Apparently, Patrick's employer had mailed his COBRA healthcare materials, but we had not received them and did not know that he needed to elect to convert from group to individual coverage. So, his insurance lapsed and he was kicked off the waiting list at UCSF. I spent the next 36 frantic hours talking to his employer, their insurance company, their intermediary third-party administrator, the hospital administrators at Kaiser and UCSF, and Lord knows who else doing paperwork and overnighting checks to get his insurance reinstated and back-dated to the day it had been dropped. All the while, Patrick was in the middle of an episode, screaming bloody murder every time I left the room. Finally, it was sorted out and Patrick got back on the waiting list, but it was another six days before a bed opened up and he was able to transfer.
I wish I could say that once Patrick got to UCSF the fight with Kaiser was over, but it was far from it. Patrick's care team at UCSF was constantly having to justify why he needed to stay there instead of going back to Kaiser. I remember once having a phone call with Kaiser's out-of-network manager who was telling me that Patrick would be transferred back to Kaiser the following day because their doctors could manage his care from now on. Never mind that the UCSF physicians did not consider his seizure condition stable, or that they stated it would be detrimental to him to force another change in location where he would experience more confusion and likely compromise his already precarious mental state. This manager was the coldest woman I had ever spoken to. There was no empathy in her voice as I cried and pleaded for her to do what the doctors at UCSF were recommending. It was not until I pulled the lawyer card and started using those buzz words again that she relented and agreed to approve him to stay for another week, when we would inevitably have to repeat this same drama again. Which we did. Over and over.
One of the cruelest abuses by the insurance system came about two months before Patrick died. We knew that Patrick had life insurance through his employer, and I realized that we had never gotten any paperwork about it. I contacted his employer, who again referred me to the TPA managing their insurance. I was informed that along with the package of COBRA documents that had never arrived, there was information about how to maintain Patrick's life insurance policy which had a hard deadline that had long since passed. I was stunned, but was sure that there must be something that could be done about it. Wrong again. Even though we had not received the documents, the only duty of care that the insurance company had to meet was to prove that they put the materials in the mail. After that, their responsibility was extinguished. It did not matter that we lived in an apartment complex where the mailman frequently put things in the wrong mailboxes. There was no requirement that the mail be sent certified so that there would be some sort of record of receipt. It did not matter that Patrick had brain cancer and even if he had received the mail, would not have been able to read it or understand its contents. All that mattered was their record of an envelope going out, and that's all it took to eliminate their liability for the three years of Patrick's substantial salary that should have been paid to his two adult children. The absolutely callous lack of heart disgusted me.
From the very beginning it struck me just how difficult it was to navigate the ins and outs of the insurance system. It was sometimes almost impossible for me to know what to do, and I had been working for insurance companies for years! It made me angry that claims adjusters were making decisions about Patrick's care instead of his highly specialized physicians. What business did they have holding his life in their hands when they had no medical training? Why did they not care what was best for him? And what about all of the patients who did not have a loved one who was not only a lawyer but able to take a leave of absence from work to sit at their bedside day in and day out, advocating for their care?
After Patrick died, going back to work for insurance companies and defending their constant decisions to deny care became incredibly difficult. Every time I found a technicality that would allow a client to refuse to pay for a CT scan, I thought about that visit to the ER when the doctors did not order one for Patrick and how that might have changed the course of his illness. What if my winning brief defending a surgical denial was the reason that someone was never able to go back to work? What kind of impact would that have on the patient's family and loved ones who were bearing the financial, emotional and physical burden of caring for the injured worker? Don't get me wrong - there are plenty of people making fraudulent claims and treatment providers who overprescribe and scam the workers' compensation system, so the insurance companies rightfully need defense attorneys to operate as a check on these abuses. I just could not stomach being one of them anymore.
Initially, my grief was so thick that I could not do anything outside of basic functioning and pretending to still be human. After the veil started to lift a little bit and I began to process all that had happened, I decided I needed a way to channel all of the energy associated with the experience. I started looking up brain tumor organizations and came across the website for the National Brain Tumor Society. There was a brain tumor walk benefitting NBTS the next month and I contacted the regional director to find out how I could get involved.
It was love at first walk. NBTS is a wonderful organization which is doing everything possible to advance research and advocacy for the brain tumor community. I attended their annual gala in Boston in 11/2016 and was completely inspired by the passion and dedication of its members and those living with brain tumors. I became a member of the planning committee for the Bay Area Brain Tumor Walk. In 5/2017, I attended my first "Head to the Hill" event in Washington D.C. where more than 300 volunteer brain tumor advocates from all over the country converged to meet with our state government representatives to push for additional funding for research into GBM and all other brain tumors. I became a member of the Pacific West Regional Advisory Board who assists NBTS with the development of strategies, initiatives, and programs that grow the organization's presence in California, Oregon and Washington. I attended their annual Scientific Summit in Boston in 10/2017 where I learned so much (often way above my pay grade) about NBTS' Defeat GBM Research Collaborative. Additionally, I volunteered at the Society of Neuro-Oncology's Scientific Summit in San Francisco which afforded me not only the opportunity to share about NBTS with the wider brain tumor community, but to see some of Patrick's doctors who became like family in the months we lived in the hospital.
Most recently, I became a stakeholder with the Brain Cancer Quality of Life Collaborative, where we are focusing on optimizing palliative care for those with brain cancer. I was also selected to attend the American Association for Cancer Research's Scientist Survivor Program in Chicago this May, a unique program designed to build bridges and unity among the leaders of the scientific and cancer survivor and patient advocacy communities worldwide. I am looking forward to learning to become a more effective advocate and bringing much-needed attention to the brain tumor community.
What Patrick went through was horrible on every level. I found it absolutely unacceptable that the insurance companies involved throughout his illness and death did nothing but make things worse for not only Patrick, but those who wanted nothing more than to ease his suffering. When someone is fighting to live, the last thing anyone should be having to worry about is paperwork, deadlines, and denials of reasonably recommended care. I am constantly plagued by the question of how to incentivize insurance companies to become part of the patient care team so that they are motivated to fund not only standard of care treatment but clinical trials that will eventually provide an end to the suffering of the thousands of people diagnosed every year. No one dealing with a terrifying and deadly illness should be treated like Patrick was. We can, and must, do better.
Like every other area in my life, I don't know where my advocacy road will lead me. I do know, however, that I am built for this kind of work. Nothing has given me a greater sense of purpose than sharing my experience with those who find themselves joining a community that none of us ever asked to be a part of. If all of the years in school and the hundreds of thousands of dollars in student loans were for the sole purpose of making Patrick's journey a little lighter, it was worth it. But I have a feeling it is bigger than that.
My involvement with NBTS has brought both purpose and meaning to a sometimes desolate existence. I have forged friendships with those living with brain tumors who fuel my fire for finding better treatments and ultimately a cure. I have been touched by other care partners who are currently walking along side of the diagnosed, as well as those whose journeys sadly ended like ours. Is it difficult to grow to love incredibly beautiful, brilliant, talented people whose futures are as uncertain as Patrick's was? Yes. Is it worth it? Absolutely.
For those of you who are grieving the loss of a loved one, or a marriage, or a job, or whatever other transformational change life has thrown your way that leaves you feeling lost, my advice is this: find your people. Fight for them. Show them, and in turn yourself, that none of us is in this alone.
I don't know about you, but I am pretty tired of trying to live up to expectations. They come from everywhere: public opinion, social media, our friends and families, and ourselves. When I say this, it does not mean that I am lazy, nor does it mean that I intend to sell all my worldly possessions to move to an ashram. (Not that I haven't thought about that. I have. Regularly.) What it means is that I have spent almost my entire life trying to be the person I think I am supposed to be with very little concern for who I actually am. And you know what? I'm OVER IT.
When my husband Patrick passed away, I found myself smack dab in the middle of a scene from "Runaway Bride." In that movie, Julia Roberts plays Maggie Carpenter, a lost, chameleon-like woman who has no trouble finding a man to marry her, but repeatedly dashes away from the aisle at the last minute. Richard Gere's character, Ike Graham, is a reporter who is doing an up close and personal deep dive into her character after being fired for writing about her without any actual investigative facts to back up his claims. In getting to know Maggie, Ike interviews all her ex-fiances about who she is and immediately recognizes a distinct pattern: Maggie morphs herself into whoever she thinks her partner-du-jour wants her to be. An example of this is the fact that when Ike asks each of the former flames about how Maggie prefers her eggs prepared, every one of them answers that her favorite is the same as their own, which of course are all different. Finally, Ike confronts Maggie, and shouts in exasperation "You don't even know what kind of eggs you like!" Maggie sets out on her journey of self-discovery and tries all different kinds of eggs before settling on which is her favorite. Just like any good rom-com, Maggie triumphantly announces her selection to Ike, and they live happily ever after.
If only finding out who you are were as simple as sampling six different plates of eggs. Sigh.
I have often used this silly but useful story to explain what it was like for me after Patrick was gone. We had become such an "us" that my individuality was all but completely absorbed into a life of "we." When he died, it didn't just feel like I lost my husband, best friend, lover, and confidante. It felt like I died as well, because it appeared that without "us," I was nothing. I wished over and over that God would take me quickly so we could be reunited, not just because I loved and missed him, but because I needed him for my life to be meaningful.
I had nothing but the best intentions when I poured myself into our love story. I was single for a long time before we got together and I had worked HARD to find self-love and acceptance. When we started dating, I did not even see those bits and pieces of "me" fading into "us." I have always worn my heart on my sleeve and prided myself on being devoted and loyal, so neglecting my individuality in favor of defining myself by the love of someone else felt natural. There were times when I realized we had become so intertwined that perhaps we were pushing the co-dependent barrier, but I was too happy to have finally found my person to care. It never once crossed my mind what I would do if suddenly he was gone, whether it be by death, break-up or otherwise, and I was left with just me again.
All of this might sound sweet, romantic even. It did to me. But the truth of it was that it was not healthy, and when that abrupt end came, I was totally screwed.
It wasn't just my relationship with Patrick that defined me, though being loved by someone certainly felt like the most tangible evidence that I was enough. It was my career as an attorney. If I am being honest, I went to law school because I thought I was stupid my entire life. I was diagnosed with a severe learning disability when I was 19 years old, during my sophomore year in college. I had been able to compensate during my adolescence (because, it turns out, I actually am pretty smart!) but I always felt that I had to work so much harder than everyone else just to keep up. I did horribly on standardized tests because I always ran out of time and got confused. So, when the opportunity came to attend law school, it fit really well into my quest for external validation. I thought if I just had the right job title, with the right initials after my name, then I would no longer feel that way about myself.
It turns out that my ingenious plan for overcoming my academic insecurities did not work. I graduated second in my class from law school, but I was always convinced that it had somehow been a mistake. When I struggled to find a job, it did not occur to me that perhaps it was because it was 2009 and the economy had completely tanked - no, it was because I did not go to the right school, or because people could tell that I was not as intelligent as my transcripts might suggest.
Aside from romance and academic prowess, I was definitely defined by how physically fit I was (or, more accurately, how I perceived I wasn't - even when I had the makings of six-pack abs!) I could go on about this one forever, but if you want more detail, take a look at my last post called "When Your Inner Child Is an Asshole." The point is, no matter how many of my goals I attained, or how much outside confirmation was thrown my way, it was never enough. I still constantly compared myself to my loved ones, and don't even get me started on what I would see on TV and social media. I saw my friends getting married, having babies, getting promotions, buying houses, and doing all the things that our culture suggests are essential landmarks. By those standards, I was an abject failure.
Within a couple of years of Patrick's death, I began to realize just how deeply rooted my feelings of inadequacy were. They controlled everything I did. They kept me in a job I hated. They kept me living in a geographic area that made me feel like I was drowning in concrete. I was surrounded by similarly exhausted people who seemed to be living miserably in order to have the "American Dream." It felt like a nightmare to me.
I find that my greatest spiritual and emotional growth is always ignited by serious pain. I was in some real, dark, might-not-make-it-out-alive discomfort. Finally, instead of berating myself for all the ways my checklist looked incomplete, I was led to ask a different question: What if we measured our worth not by our achievements, but by our willingness to live outside of society's mandated list of "accomplishments?" What if instead of checking off the boxes - go to college, get married, have children, etc. - we actually took the time to get to know ourselves well enough to decide whether the items next to those boxes were what we actually wanted? If that is what society valued, I hardly think that I would stay in a situation that left me waking up daily with a sense of impending doom.
It was through a massive leveling of the ego that real change started to happen in my life. I let go of the career that might have made it acceptable for me not to have the marriage/babies/white picket fence. I moved home with my parents. I stopped treating the meals I ate like some sort of emotional reward, and conversely every workout like a punishment. I surrendered to the fact that I could no longer forcefully use my will to make my life look like what it "should." I started to see that, for whatever reason, my soul has different things to accomplish in this life than those around me. I began repeating a mantra given to me by one of my many spiritual guides who said "God's first priority is your healing and progression, not your resume."
The second I stopped depending on people, places and things to be "okay," life began to look a little brighter. I started to feel like I was able to get small breaths above water. I began to plug into the energy of the Universe to guide me, and let me tell you, it is showing up for me in ways that leave my mind boggled. I am doing things that I never thought I could because of fear of judgment by the world, including writing this blog and teaching my first spin class yesterday. For the time being at least, I am no longer motivated by the need to control my destiny and check the right boxes. There is so much freedom in letting go of what others, or even that scared little girl in my head, might think.
I realize now that I am not on a journey to get back to who I was before "I" became "us" with Patrick. It is so much bigger than that. I am discovering who I am and what I want for the very first time. I am laying a foundation of being grounded in the seat of my higher self instead of being crushed under the weight of that inner asshole who tells me I alone am not enough.
Whether or not I am ever led to a loving partner again is not my primary concern. Neither is my job title, my address, or the number on the scale. What matters is that I know how I like my eggs. And this time, I won't forget it.
I have a problem.
There is this person in my life who is constantly trying to steal my joy and drag me down. She talks to me in a way that I would not dare speak to another human being. She berates me, tells me why I am not good enough/smart enough/skinny enough, and never misses an opportunity to compare me to others, always letting me know that I am "less than." She is more or less the definition of a jerk.
Now, I know what you're thinking. Why on Earth would I allow someone like that in my life? Cut the cord! Tell her to kick rocks and leave you alone! Her behavior is despicable and altogether inexcusable. Be done with her already!
But here's the problem - she lives inside my head. Unfortunately, evicting her is not that simple.
There are a lot of names she goes by. Some call it the ego, others the inner child or the small self. I not-so-lovingly refer to her as my "inner asshole" because, well, the shoe fits.
My inner asshole is not an actual person in the human form sense, but she is just as real as the person sitting next to me in the coffee shop. Some of my very first memories involve her. When I was in 7th grade and my ballet teacher told me I was too muscular to be a dancer, my inner asshole told me that what she meant was I was fat. That same year (apparently not a good one for me), I had a math teacher who literally told me I would never be good at math. My inner asshole told me that I was stupid in every subject, not just math, and I don't think it's any coincidence that I never, ever was able to understand math throughout the rest of my schooling. When I gained my "Freshman 15" (okay let's be honest, more like 25) in college after quitting competitive swimming, my inner asshole told me I was a disgusting embarrassment and that the best solution would be to start throwing up my food. This led to years of bulimia and brought me more than once to the brink of suicide when I was too ashamed to look myself in the eye. In a desperate effort to just SHUT HER UP, I engaged in years of high-risk behavior, which often took the form of drinking until I blacked out to get some relief. That's what alcohol and drugs did for me - they gave me a brief respite from the agonizing chatter of my inner asshole whose entire purpose seems to be to convince me I will never, ever be enough.
Since I got sober in 2008 and chemical sedation of my inner asshole was no longer an option, I have spent years of my life and thousands of dollars on self-help books, experts, support groups, and anything else I could think of to try and control her. I thought if I just spent enough quiet time in meditation, or learned the right affirmations, or lost enough weight, or [insert other behavior here] ... then I could be rid of her. I would finally be able to kick this villain out for good, who has been living rent-free in my head for 34 years. I have wanted desperately to figure out how to make her behave. I have pleaded with her to be kind, and when she wouldn't listen, turned to the Universe to ask for relief. "Please God," I would say, often aloud on my knees. "I beg you - please make her leave me alone."
Sometimes, my inner asshole quiets down long enough for me to enjoy myself. That's when she is the trickiest, because I actually think I've finally outsmarted her and she's gone. I start to stand a little straighter, engage with people around me more, and do things that she has told me I'm incapable of. And boy, does that feel good! So I push myself a bit more to step outside of my comfort zone, little by little. I feel empowered even more! I have won!
That is, until something happens that hits a nerve that has not yet healed from my past. Suddenly, she's back. DAMN IT. She's telling me how clearly I haven't worked hard enough because if I had, this wouldn't be happening. She would be gone if I wasn't such a failure. Just like that, it's as if she never left.
This cycle has repeated itself for as long as I can remember. It is exhausting. But, there is some good news to be had - I think I have finally discovered the most effective tool in my arsenal for dealing with my inner asshole. It is not what I expected it to be, namely some forceful use of the will to eradicate her from my life. In fact, it's the exact opposite.
When my inner asshole starts to rage, the best thing I can do is absolutely nothing.
I know that sounds ridiculous. It seems counterintuitive, at least to me. I have always been a "do-er," not a "be-er." Society tells us that our value is measured in our accomplishments, and mastering my inner asshole has been a seemingly unwinnable battle. But the truth is, I have no greater chance of shutting up my inner asshole by exerting my dominance over her than I do of beating a world-class fighter in a boxing match armed with nothing but sheer willpower, having never gotten in the ring.
The truth is, I have to give my inner asshole space to exist. It is like a little boy who starts sobbing when his favorite toy is taken away - would it be effective to start shrieking over him, telling him he has to be quiet? I am sure there are some that would say yes, you have to show him who's boss, and if that works for you, great. For me, I would say absolutely not. Sometimes, he just needs to cry it out. Would I judge his character and think that he is weak, foolish, and undeserving of love and support? Never. I would allow him the space to have his moment, knowing it will pass. I would accept the tantrum for what it was without judgment. If he needed it, I would console him. So why is it so hard to do that for myself?
When I lived in Italy after college, I was an indoor cycling instructor and absolutely loved it. Over the years I got more involved in weight lifting and cross training, but after a series of injuries I was forced to find something lower impact that would not involve constant pounding on my joints. A couple of months ago, I decided to get back into spinning, and fell head-over-heels in love with a boutique cycling studio in San Luis Obispo. The vibe is amazing and the owners have truly cultivated an environment based on support and self-care that makes me feel safe and honored. So, when they told me they were going to be piloting a new instructor training program, my initial reaction was excitement - how awesome would it be to get back up on the podium and encourage other riders? I signed up and was so looking forward to getting started.
And then, my inner asshole decided to attend the first training with me.
As soon as I saw the other five girls who were to be going on this journey with me, my inner asshole saw her opening. They were all younger than me. They were all skinnier than me. They were the girls I had always aspired to be but could never quite measure up to. What the hell did I think I was doing there? "No one wants to look like you, Lisa!" she told me. "You're like the bad "before" picture on an Instagram fitness journey!" I conjured up mental images of my wedding day less than three years earlier, remembering that I was many sizes and pounds smaller than I am now. Never mind that I was quite literally starving to death at the time of my wedding. For the eight months before, during my husband's brain cancer journey, I was living on Red Bull, protein bars, and anxiety, because the stress made it almost impossible to eat. No, somehow the fact that I had "let myself go" after he died conjured up all of those old feelings of uselessness and embarrassment.
Normally, my inner asshole's tantrum would have either directed me to make up an excuse to leave immediately, or to bow out for the rest of the program. I would have felt perfectly justified, and given myself permission to not put myself through the inevitable mind-f*ck that would follow if I completed it. Honestly, if that had felt like the right thing to do, I would have. But it didn't. I knew that this was the next act of radical self-care that would be required of me on my path to self-acceptance. So, I strapped in for the ride, knowing that it would at times be excruciatingly painful.
Throughout the program, I gave my inner asshole permission to feel however she needed to feel, without getting attached to those emotions. When some photos were taken of me on the podium and posted online, I cringed as she told me how fat I was. When some of my song profiles did not go exactly according to plan, I allowed my heart to sink and I heard her when she called me a loser. She told me that I am a lawyer, not a fitness expert, and I had better just knock it off and get back to what I know whether I hate it or not. But this time, I didn't tell her to shut up or try to out-shout her. I acknowledged her feelings, and let them pass. And pass they did, every time. When I felt that tightness in my gut that is so often intertwined with a tantrum by my inner asshole, I made a conscious effort to relax and release them. I started to realize that the feelings were not real. Finally, the saying "feelings aren't facts" was making some sense.
Over the weeks of the program, I started to feel more and more confident, realizing that I can bring more to the room than a perfect body. I can bring kindness. I can bring strength. Every one of the challenges I have faced, whether real or imagined, makes me more well-suited to inspiring people to become the best version of themselves because that is what I am trying to do in my own life. The truth is, I have overcome far greater obstacles than the fear of being judged for my imperfections. (I will note here that every single one of the beautiful women in this training group also brings SO MUCH MORE than a tiny waist - they are each kind, incredible people who I have had the pleasure of getting to know!)
Today was the last day of our training. My inner asshole showed up at the end, because all of a sudden the possibility of really getting up in front of a class full of strangers instead of my supportive ladies became real. She told me, again, that I am not good enough - that maybe if I lose 20 pounds I could consider teaching. She had me in tears before even walking out of the studio. So, on my way home, I let her cry. I recognized that underneath all of her bluster, a greater part of my soul wants nothing but the best for me and my physical, emotional and spiritual health. That is the part of me that I am interested in nurturing.
I used to say that I hoped someday my inner asshole would be nothing but an unpleasant memory, like the first time I tried oysters and they made me violently ill. I have started to feel, however, that the concept of hope simply means that I am refusing to accept circumstances as they are today. The more that I search for external validation, whether it be a certain number on the scale, the right feedback from riders in a spin class, or the "perfect" job, the less likely I will ever be happy. I have spent my lifetime subscribing to the belief that I have to earn love and respect from not only other people but from God, because Lisa in and of herself is not enough. The more that I understand that my presence on this planet gives me inherent worthiness, the better off I am.
For now, my inner asshole is still a part of my experience. As long as she is, I am going to work on allowing her to do what she needs to do to work out her issues rather than trying to shove her face in the sand. And the next time she has an opinion, I will simply thank her for sharing.
What's Left of Me
What followed Patrick’s death was a blur. Life as I knew it was over. My purpose was gone. I had no sense of self anymore. Worst of all, I felt responsible for his death in a way. I had made it my mission to save him - and I failed. I thought I was being punished for the choices I had made in life in some way. Never mind the fact that he had been diagnosed with just about the worst possible thing you can have - nope, somehow it was my fault. All of those negative thoughts that ran my life for the years before I got sober felt like they were being broadcast on a loudspeaker 24/7. Guilt dripped from my pores.
Immediately after Patrick's death, the rage of his family which had been present and palpable throughout our relationship and his illness was unleashed. They accused me of stealing money from him. They enlisted the lawyer who I had hired for Patrick
set up his estate to come after me. The details are not important, but it was ugly. I was horrified that anyone would think I would do something so terrible during the time I acted with more integrity than perhaps ever in my life. Eventually, I relented, because I could no longer mentally handle the fighting. I also knew that no matter what I did, they were never going to love and accept me. I had to let go of the hope that somehow, someway I would be able to convince them that I was not the image they conjured up of me. I had to accept that their opinions belonged to them and had nothing to do with who I am, nor were they any of my business. Letting go would require a lot of painful work, but it was necessary for me to move forward in any meaningful way.
I started grief counseling about two weeks before Patrick died. About six months later I was having constant nightmares and flashbacks that became debilitating. I could not find my way out of reliving those last days of his life. I was diagnosed with PTSD and had to take another leave of absence from my job. Yet again, I felt like a failure because I could not just "get my sh*t together" and function like a normal person. Everyone else was moving on with their lives and I couldn't. Truthfully, I don't think I wanted to. It was like holding the pain was evidence that our love was real, that it had not all been a dream that turned into a nightmare. I was afraid that if I allowed it to become anything but a festering scar that somehow I would be judged even more harshly. I underwent several months of intensive hypnotherapy to work through the memories and make them less terrifying. I was depressed to the point of suicidal most if not all of the time - not in an actively-planning-my-demise way, but in a "You know, if this ended, that would be fine with me" way. I am pretty sure that I would not have survived the two years after he died without my therapist.
It was suggested to me that I try a grief group, which was a short-lived endeavor. I was the youngest widow/widower by over 20 years, and I got sick of people telling me "Oh sweetie, but you're so young - you have your whole life ahead of you to move on and find someone else." They actually said that with straight faces, thinking it was somehow helping me. I was disgusted. I didn't want a long life without Patrick. I actually found myself jealous of those in their latter years because, I thought, at least they are closer to being reunited with their partners! At least they got to live out their love stories!
I had more rage inside of me than I am normally willing to admit on a public level, and it was killing me. But, the lights needed to stay on, and with all of the debt I incurred over the year I spent out of work, I kept pushing on. I was in survival mode, and did whatever I could to not drive off a cliff. For a while that involved buying all the things and putting myself into even more debt. I had three surgeries because of my chronic pain, including on my back which was bad for years but destroyed by the months of transferring Patrick in and out of bed, but I was never free of that pain. I was diagnosed with rheumatoid arthritis and the joints in my hands were so swollen I could hardly move them in the morning. I got a full back piece tattoo in his memory and several other smaller ones. The amount of ink I had done was pretty astounding, even for me. It was my fearful ego's way of begging me not to forget.
One of my strangest coping mechanisms was buying sheet cakes and eating them for every meal until they were gone. I bought a LOT of cakes, people. I literally started going to different bakeries because I thought the employees would notice how often I was there. I remember once a bakery worker asked me if I wanted to have anything written on the cake. I almost screamed, "Yes, have it say 'My F*cking Cake!" but instead I quietly declined while avoiding eye contact. It was so sick, and so much like my behavior when I was drinking. But, I did what I had to do to keep my eyes on the road in front of me. (It turns out, though, that I'm not alone - if you haven't seen Tina Fey's Saturday Night Live sketch on #sheetcaking, I highly recommend Googling it.)
For two years, I sought guidance from everywhere I could think of – my recovery mentor, my therapist, an energy healer, numerous doctors, a naturopath, and a life coach, to name a few. Every single one of them in some way, shape or form told me that the answers would come through prayer and meditation. I did not have any interest in that answer, so I continued my search through different sources, but it all turned out the same. It seemed there was no getting around seeking healing through the Divine.
After a great deal of soul searching, I realized that it was on the day of Patrick’s diagnosis that my faith in the Higher Power which had gotten me sober and carried me through all of life’s challenges, died. I figured that if this was “God’s plan,” then I had no use for or interest in God. For two full years after Patrick died, I wanted nothing to do with God/Source Energy/the Universe, whatever you want to call it (I use these interchangeably). It was the loneliest time of my life, because not only did I shut out God, I shut out those closest to me. Deep down I knew everyone in my life would eventually leave, so I thought that if I kept people away, the pain would be less. Of course, all this did was further my depression, and allowed those dark places in my mind to live freely in the open.
Finally, in July 2017, there was a crack in my hardened exterior and the light of my Higher Power started to creep back in. I had been meditating using an App on my phone at the suggestion of a friend for a week when I heard “I’ve missed you.” I broke down and sobbed. I felt the love pour back in, realizing it had been with me the whole time, but patiently waiting until I could receive it.
For the past few months, I have gone from shunning God to completely living in faith. I have known that I hated my job for a long time - years, in fact. As a litigation attorney, my job was literally to fight every day. It was so contrary to the needs of my soul that it finally made me physically sick. I spent the entire month of September 2017 with severe nausea and being unable to eat on a regular basis. I went to the hospital once where they said I had gastroenteritis, but it just would not get better. Tests showed an enlarged liver, but my functioning was fine. I also was having a terrible flare of my rheumatoid arthritis, which had been relatively well-controlled. Nothing explained it, except for severe stress and soul sickness. I could literally no longer stomach the work of helping insurance companies save money on workers’ compensation claims after having to fight tooth and nail for Patrick’s care when he was sick. Being a part of the insurance defense grind where my worth often felt distilled down to a sad-faced emoji on a monthly billable hour report was not just making me unhappy – it was killing me.
Through meditation, I learned that I was being asked to take a step out in faith. The Universe was telling me that it was time to leave my job, and that I was not going to be able to see what the next step was until I did so. It was also made clear that I should not renew the lease on my apartment I shared with two roommates – another unhealthy situation, through no fault of theirs – which ended in November. I was terrified, but I knew that I would not be able to move forward until I let go of my attachment to being a lawyer and the identity I had worked so hard, and put myself into so much debt, for. This truly was asking a lot of a girl who never takes a step until she can see the next dozen, but it had to be done. So, I had a conversation with my boss, who was far more supportive than I expected. She applauded my bravery and told me I would always be welcome back. I left that job after five years, put all of my things in storage, and moved to the beautiful Central Coast of California to take some time for myself.
Nothing, I repeat NOTHING, in my life looks the way I thought it would. Or should. I was supposed to be married, having babies, making partner in my law firm and buying a house. I wasn't supposed to be a 34 year-old widow with crushing debt and equally debilitating emotional trauma. It just isn't supposed to look like this. But it does.
So, here I am. I don't know where my story is heading. I do believe that if I continue to seek to expand my awareness and consciousness, and focus on my desire to bring love into the world, the next step will become apparent. At least I hope so. It's certainly on its own timeline and I have no say in the matter. I am just doing the footwork as a soul occupying this body and learning not to judge what it looks like.
Today marks 2.5 years since Patrick's death. I still miss him every day, though the experience has evolved. It used to be like walking around as an open wound where anything that touched me was excruciating. Now, it's like getting hit on the funny bone - something will strike the Patrick-sized hole in my heart and it will hurt like hell, but the pain subsides faster and doesn't constantly live on the surface most of the time. I think he would be proud of the person I am today and the dramatic change from living a life from a place of control and fear to one of surrender and faith. I didn't hide from my grief. I have done the necessary work. I have accepted that some of it will always be there. I have gotten to the guts underneath the grief that still need some attention. More is being revealed.
All I have to say to the Universe at this point is bring it on. If I have not been irreparably broken yet, I see no reason to believe I won't find my way out of this period, too. I've got this.
Perhaps this is the start of my book after all.
"Wait, are you talking about... cancer?"
They say that life can change overnight, and it did. Horrifically, terrifyingly, irreparably – it did.
In August 2014, we had just gotten back from a two-week vacation with his kids in Hawaii. Patrick surfed, hiked, and was the absolute pinnacle of health. He had been experiencing some strange symptoms over the past few months, including one trip to the emergency room for what was diagnosed as vertigo, and no one even thought to do a CT scan or any follow-up. Just take some anti-nausea medicine, they said. Maybe it's an inner ear thing, they said. We kept on looking for a house and living life as before.
Then, on September 15, 2014, at around 2 AM I heard Patrick talking loudly from our living room. I walked out and saw him sitting straight up on the floor. Every word that came out of his mouth was complete jibberish. He was looking at me, but it was like he was looking through me. I can barely get the words out on the page even now, over three years later. I thought he was having a stroke and immediately called 911. When the paramedics arrived, they were asking him questions, and he could not really answer. They pointed at me and asked, “Do you know who she is?” to which he shouted “Yes!” But when they asked him my name, he just stared off into space. He was immediately taken to the hospital, and on the way he had two grand mal seizures. He was put into a medically induced coma for 72 hours, during which time they ran test after test. At the end of four days, they told us that there was some kind of mass in his brain, but that the image was obscured because he had a bleed. Nonetheless, their neurosurgeons had reviewed everything and decided they did not think it was anything unmanageable. They were convinced that he would be able to recover.
They were wrong.
Patrick had another seizure the next week. This time, the MRI was clear – he had a lesion, which I did not even know meant a tumor. On October 7, 2014, the day before he was scheduled to undergo a craniotomy to remove what they could, the neurosurgeon came in with the results of the new, advanced MRI. He told us that they wouldn't be sure until the pathology came back, but that it looked like a Stage IV astrocytoma, also known as glioblastoma. The surgeon said that once Patrick healed from the surgery, he would need to be fitted for a mask to start radiation, along with oral chemotherapy.
"Wait," I gasped. "Are you talking about... cancer?"
That is how naive I was. Up until the day before his surgery, I never even considered that we were dealing with cancer. Patrick was going to heal from this. It was going to be a tough recovery, but we would get through this together. We would be able to get married, have babies, buy our house, and come out the other side, stronger than ever. Suddenly, everything stopped. I could barely breathe. I knew absolutely nothing about the illness, but what I did know was that Patrick’s older sister died of the same thing 11 years before. She only made it four months after diagnosis.
Patrick went through a gruelingly long surgery and got into the recovery room. The first thing he did when I saw him was crack a joke that his surgeon looked like he was 12. It was so encouraging to see him smile and laugh. He was so tough for everyone all the time.
A week later, the pathology was back and our worst fears were confirmed: it was the big monster. A GBM. The one that killed his sister and had a median survival rate of 14 months. I stopped reading the statistics right away when I realized just how bad they were.
From then on, I took everything I had learned about being of service to others in my recovery and put it into action. I made it my mission that Patrick would know every day how loved he was. Patrick spent half of his life dedicated to a fellowship and sharing his experience, strength and hope, saving countless lives in the process, and I saw this as my chance to pay that back. I promised him I would never leave him. I never did.
I took a leave of absence from my job and committed to being with him throughout the process. This was often incredibly difficult, as Patrick had an extremely complex problem with focal seizures that caused him to suffer from long periods of psychosis. Initially, the facility he treated at didn't know how to handle him and would simply put him in the ICU, heavily sedate him, and tie him up in four-point restraints. I fought like hell with his insurance company and finally got him to UC San Francisco where some of the best and brightest minds in the world did everything they could to help him. Collectively, he spent over five months as an inpatient in the hospital.
Often, Patrick was not Patrick. He was mean, angry, and violent. He said things to me that he would have never said to his worst enemy. He accused me of sleeping with everyone who walked in the room, not limited to the men. I knew it was the tumor, but it looked, talked, and sounded like him – it was hard to separate the two. He told me in his lucid moments about how tortured he was during those times. He saw blood dripping from the walls. He thought a nurse's dog was in the ICU was pooping all over the floor and he was furious that no one would stop it. He slowly walked the halls of UCSF, with me and his sitter following behind, shouting "Save yourselves!" to the rest of the neurological unit because he thought all the nurses and doctors were "on the take." He ripped IV's out of his arms and was a semi-frequent "code grey" because he was so combative. The times at home were much the same, often worse, but I did not talk about it for fear that he would be institutionalized - and I was having none of that.
I remember one time a friend was visiting when Patrick was no longer ambulatory. I had just gotten him back into bed after washing his bedding, handing him a thermos of chocolate Boost, which was one of the only ways to ensure he got sufficient nutrients. For no apparent reason, he got that look in his eye and he threw the container at me. I watched the brown liquid splatter all over the newly washed sheets, the wall, and me. My friend looked horrified. I gulped and quietly got him back into his wheelchair, stripped the bed, and put the soiled linens back into the washing machine.
On another occasion I returned from a short errand while our friend Thom stayed with him, who was one of the only people who could handle him. I walked in, greeted by that look, and he started calling me a vulgar name repeatedly. I thanked Thom for his help and said he could go, tears streaming down my cheeks. Usually, Patrick would have these episodes and he would go to sleep with no memory of it when he woke. This time, he did not even go to sleep, and about ten minutes later touched my arm tenderly saying, "Baby, what's wrong?" I did not always keep my cool, and I said "Do you not remember what you just said in front of Thom?" He didn't, and insisted I tell him. I did. He began to cry uncontrollably, rocking back and forth saying "How does that happen?!" over and over. I have never seen him look more devastated. When I realized he had absolutely no recollection of what had happened only moments earlier, I held him and we sobbed together.
I am not telling you this because I want you to feel bad for me, or to think Patrick was a bad guy. I hope by now you know that Patrick was an AMAZING man. I am talking about this because it was the truth of our experience. The tumor had a life of its own. I lived for the moments when he was my sweetie, and he always came back from those dark moments.
In spite of those extreme challenges, we also experienced moments of true joy. Patrick asked me to marry him when he was in the hospital. At the beginning of May in 2015, he made the courageous decision to go on hospice, because he did not want to be in the hospital or feel like a science experiment anymore. We planned our wedding in a week. I bought my dress online and picked up his digs at the mall. Thank goodness he had taught me how to dress him, because he was VERY particular about fashion. My friends got the flowers. Our invitation was a group text message. On May 24, 2015 we were married on a bridge over a pond at our apartment complex. My brother-in-law performed the ceremony with our closest family and friends present. He had a really good day that day, and so did I. It was perfect.
Unfortunately, brain cancer has no regard for the newly married, or any of one’s plans. The day after Patrick's 55th birthday, he went in to his last eight days of decline. I gave him morphine around the clock to keep him comfortable. I opened our doors to loved ones who needed their final moments with him. His family was present as he was read his last rites.
In the end, I was holding his hand when I tearfully said “Baby, I love you. I’m going to be okay. You can go now.” And he did. At 4:26 AM on July 11, 2015, just 48 days after we said “I do,” Patrick died in my arms.
The Best of Times
My mom always says that I don’t do anything half way. My relationship with Patrick was no exception. In the months that followed Patrick and I left each others’ side as little as possible. He moved in “temporarily” while he was looking for a place, and after a while we realized that we spent nearly every waking minute with each other so it didn’t make much sense for him to leave.
For Patrick, while it was a very exciting time and he felt so grateful to have found happiness in our relationship, every day dripped with guilt for his decision to get a divorce. Because we started seeing each other shortly after he made that choice, I became the target for everyone’s anger and blame. Patrick’s ex told everyone that I was the cause of their relationship falling apart. The rest of the family seemed to believe that I was simply a home wrecker, nothing but a tawdry affair and a product of Patrick going through a mid-life crisis. This was a much easier narrative for everyone to accept, I suppose. It couldn’t have been further from the truth, but it was a corrosive thread in our relationship that never completely went away.
For me, I suddenly found myself in a very serious relationship with a real grown-up. The people I dated in my teens and twenties were just varying degrees of immature douche-baggery who cheated on me, prayed on my incessant insecurities, and couldn’t have made me feel more terrible. To be fair, I wasn’t exactly a peach to deal with while I was in those relationships. I struggled for years with an eating disorder based in self-loathing and constantly found myself in relationships, both romantic and otherwise, which devalued me even further. When I got sober, I decided that I needed to be single for a while to try and “get my sh*t together” enough to be with someone. Unfortunately, the motivation at that time was still because I wanted to be with someone, and not because I truly wanted to be an independent woman.
When I met Patrick I had not been in a relationship for over four years. All of a sudden, here I was with Patrick – the larger-than-life personality with looks to match. I had zero experience in relationships other than one filled with drama and co-dependence, and I quickly found my insecurities creeping back in. I thought he was too handsome for me, too successful for me, too sweet for me, just TOO. He, on the other hand, found himself with a woman more than two decades his junior who was smart, successful, and funny (his perception, not mine) and he thought I was TOO.
That “too-ness,” as I call it, gave us a lot of trouble. While we had both been sober for many years, we each had a long history of anger and jealousy that seemed to be incited easily when anyone of the opposite sex had the audacity to talk to either of us. Suddenly, some of the things that most attracted us to each other started causing real problems. We were both so social, probably a little bit flirty, and we would end up accusing each other of engaging inappropriately with people. It was brutal.
That is not to say it was all bad – far from it. Patrick showed me love in a way that I didn’t know possible. He looked at me like I was the most beautiful thing that he had ever seen. He spoiled me rotten. He took me on beautiful weekend getaways. He made love to me - it was never just sex. Even when it was hot and steamy, which it pretty much always was, he would look into my eyes and connect even in the most intimate times. He cared about me. He wanted what was best for me. He LOVED me.
See, Patrick had this huge heart. For years he stayed in his prior marriage because his kids were his whole life. Suddenly, he was free to feel, and to love, and to be the man he was at his core. I was the recipient of all of that pent-up passion and I was the luckiest girl I knew. Even though the circumstances were difficult, Patrick always said that if we just held on for a while, things with the outside world would sort themselves out. Family and friends would come around, he just knew it. In the meantime, we lived in our own little happy bubble. It was us against the world and I loved it.
It wasn't perfect by conventional standards, but it was my perfect.
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.