I have been thinking a lot about the concept of "home," and what it really means to me.  I am sure this is being stirred up as I have spent many months setting up temporary residence with my family, all of my things in a storage unit hundreds of miles away, not feeling particularly rooted to any place or anyone.  This question naturally comes up as I shed each of my identities, one by one - lawyer, widow, and even daughter, friend, and auntie.

What do I think of when I picture what "home" is?  In the past, it has always conjured up visions of a physical structure, one where my possession are housed, where I go to lay my head at night.    But, I have moved so many times since leaving my family for college that I began to question whether it could possibly be the actual brick and mortar that made me feel like I was home.  With a few exceptions, I have moved almost every year for the past 17 years, and I certainly have not spent that entire time feeling homeless.  If not the structure itself, was it the stuff inside?  Well no, that couldn't be it either, because I am constantly acquiring and getting rid of things and I have but a few items left from even several years ago let alone my childhood.  

When I started doing some casual research on the subject of home, familiar themes popped up.  "A home is a foundation; a place where everything begins."  "Home is a safe haven and a comfort zone."  "Home is a place where we can truly be ourselves."  There were, of course, other ideas that were more directly tied to the concept of a "house" rather than a "home" (i.e. "A home is a place where we build memories as well as future wealth"), but I was more interested in the responses that evoked feelings rather than facts because I have established that, at least for me, home is not the building I live in, nor the things I put inside.  

What words do I associate with home?  Safe.  Comfortable.  Peaceful.  Warm.  Calm.  Love.  Love - yes, maybe that is what it is all about.  As a child, I envisioned my home being where my family was.  More recently, it was where my late husband Patrick was.   But what about all of the years that I lived alone, or with roommates whom I had no relationship with apart from our physical proximity to one another?  I don't remember having a constant feeling of being without a home in those situations.  Actually, it was quite the contrary when I lived alone - those years were some of the most grounded I have ever felt.  

Another one of the words that popped up frequently in my search was "stable."  I constantly saw people talking about how their lives were going to unfold, from vacations they would take to families they would start, once they had a "stable home."   According to the Merriam-Webster dictionary, "stability" is defined as "the property of a body that causes it when disturbed from a condition of equilibrium or steady motion to develop forces or moments that restore the original condition."  So, it would seem that many people regard home as something that is unchanging and reliable; something we can count on to stay the same, regardless of the circumstances life throws at us.  Right there, it should be obvious that this concept of home is a dangerous one, because there is no way to secure life with a safety pin at any point, tethered in time to remain unaltered.  As soon as something unexpected occurs, in this scenario the sense of security that home brought would be violently yanked away leaving the person again drifting aimlessly through space.  This idea of home is nothing but an illusion, because it assumes that things cannot, will not, and should not change.

I was recently in San Diego for my annual trip where I visit friends and celebrate another year sober.  (This time it was ten years, which still blows me away.  I know what an absolute miracle it is, and I don't take it for granted anymore.)  While I was there, I spoke about my process of letting go of attachment to the different roles I have engendered for myself, and just how hard -- but how freeing -- it has been.  A close friend of mine commented that she does not have attachment to her job in the way I did, but that instead her attachment was to her family.  I cringed a little when I heard this, beautiful as the intention behind it may have been.  What happens if the family unit falls apart at some stage, or a relationship is irreparably damaged?  What happens when (not if) members of the family die?  Who are you going to be when your husband gets ill, or even when your children are grown and leave the house?  Will your sense of home be gutted as well?  

Also during my visit, another friend was packing up and getting ready to sell her house.  Her husband mentioned to her that the change would be hard, as this was the place where they had all three of their young children; where they took their first steps, formed their first memories, and started becoming tiny people.  Having moved out of my childhood house after my freshman year in college, I recalled my own experience with this painful process.  I was completely devastated at the time, and angry at my parents for making a decision to leave.  I thought, "You can put all of our stuff into some new place, but it will NEVER be home."  Now, of course, it has been 16 years since that move and the house they now live in unquestionably has all the feelings that our first house did.  

The hardest detachment from "home" that I have ever experienced was when I was forced to move out of the apartment where I lived with Patrick.  It was not only where we had built a life together, but it was also where we had gotten married, where I cared for him during his blisteringly painful experience with brain cancer, and, most importantly, where he died.  I felt like I was somehow betraying him in leaving, but minus his substantial income and the disgustingly high rent in the Bay Area, I was no longer able to afford to stay.  I remember tears streaming down my face as I packed not only our things but the hope of our future into countless boxes.  I had to have a loving friend come and take the things of Patrick's to be donated, because I could not stand the thought of watching someone carelessly unload what I had come to view as our lives into a dusty bin to be redistributed.  It certainly did not feel like just "stuff."  It felt like memories being stripped away from me, replaced by fear that someday it would be as if this part of my life never actually happened.

When I left Northern California in November of last year, I expected my stay with family to be short - maybe a month or two.  So, I put all of my worldly possessions inside a 10x15 foot storage unit which is completely full from floor to ceiling with stuff, all of which at some point seemed incredibly important.  The largest items are the couch and living room tables that belonged to Patrick.  When he was sick, we rarely talked about how it would all end, but one day he looked at me with tears in his eyes and said "I want you to have the sofa."  We held each other and cried, as this was his first real acknowledgment of his mortality and the fact that the end of his life was drawing near.  Patrick spent almost all of the days he was sick on that sofa, aside from the times he was in the hospital.  It was where we laughed, where we cried, where we loved - and my attachment to that piece of furniture has been real.  It was symbolic of our love story, of his death, and of my own journey back from the devastation of his loss.  Much like when I gave away many of his clothes, I was afraid that letting go of the couch would be like losing him all over again. 

For the last few years I have been believing my own delusion that I will again have a home once I move into a place with that sacred sofa.  I have been grasping to hold onto a life that no longer exists by holding on to the things that represent that life.  What I have refused to see is that no matter where I put that couch, Patrick will never again sit on it.  We will not laugh together watching "Elf" at Christmastime.  I will not find him lounging there with the Warriors game paused because he knows I don't want to miss a minute.  By continually dragging the evidence of our lives with me wherever I go, I am actually causing more harm to myself than good because it allows me to continue relying on people, places and things to give me a false sense of security.  

So if it's not the stuff, the people, the actual building, what - and where - is home to be?  The answer, for me, is as surprising as it is painfully obvious.  The only place that home can possibly exist is within myself.  It is the quiet, peaceful place where my soul can rest comfortably no matter where I am.  It relies on no one, on nothing, to be okay.  It is not dependent on having even basic physical or emotional needs met.  Home asks nothing of me, least of all the impossible request that the facts of my life remain unchanged.  It needs no specific location, or even roots at all.  It is not rattled by wandering the planet without a fixed address, because it does not demand one.  Perhaps most importantly, it does not need anyone else to play a part in my story, and it exists whether others come or go.  All it needs is me.  

​It turns out that home is, in fact, where the heart is.  

I am hereby calling out all the garbage I have been seeing on social media and in the news regarding mental illness and suicide.  Why?  Because it's ignorant, misinformed, and downright dangerous for people who this very moment might be contemplating ending their lives.  

When news broke about fashion designer Kate Spade dying by suicide yesterday, so did my heart.  As someone who has dealt with mental health problems and has gone through prolonged periods contemplating my own end in this way, I knew how dark it must have been for her.  I don't ever pretend to know exactly how someone feels, whether they are happy, sad, or any other emotion, but I certainly can empathize with feeling like there is no way out.  In those times, for me, I believed that the pain I was drowning in would never end.  My dreams had been dashed.  It was like someone had set fire to the roadmap I had drawn for my future.  I could not see how my life would ever be okay.  Suicide seemed not just like the most favorable option - it often felt like the only option.

I have been through several dismal epochs that evoked suicidal ideation, the most recent of which followed the death of my beloved husband Patrick to brain cancer in 2015.  I was diagnosed with PTSD six months after he died after suffering from severe depression, panic attacks, extreme avoidant behavior of people and places that reminded me of him and his illness, nightmares, and reliving his death and the days leading up to it as flashbacks.  These were only some of the symptoms I was dealing with related to my mental health.  On the physical side, my chronic pain was inflamed so severely that I underwent surgery on my elbow and my back in 2016, with several other operations recommended; I was diagnosed with rheumatoid arthritis; I had serious migraines almost daily.  You get the picture.  Oh, and my cat died of cancer.  Throw some salt on the wound, why don't you.

I was not at all in denial of the severity of what I was going through.  I had been in therapy weekly since two weeks before Patrick's death.  I was active the recovery program that had helped me maintain my sobriety for many years.  I sought spiritual counsel whenever and wherever I could.  For a long time, I was on medication for anxiety and depression.  I was engaged in every possible activity that I could think of to treat my mental and physical illnesses.  I had the love and support of my friends and family.  I had a good job as a lawyer and I was trying so very hard to be okay.

And yet, every single day I wanted to kill myself.  

In the day and a half since the news about Ms. Spade broke, I have been hearing the ever-so-convenient narratives that suicide is the most selfish act one can possibly do; that it comes from a place of not caring about your loved ones; that it is somehow a moral failing by someone who is bereft of God; et cetera, et cetera.  I feel a genuine rage brewing inside of me every time I see one of these ill-conceived anecdotes.  While I cannot speak for the departed and have no delusion that I can vouch for everyone with mental illness who has been visited by these thoughts, in my experience there is absolutely nothing selfish about suicide.  It is, in fact, the complete opposite.  While I knew that the people in my life would experience sadness and loss, I truly believed that they and the rest of the world would move on and be better off without me.  I felt like a terrible burden.  I was ashamed of my constant struggle in and out of bouts of depression.  I was embarrassed that I had to repeatedly go on short-term disability because I could not keep up with the rigors of my job.  I looked at the mass of financial debt from my student loans and saw no way out, particularly given my inability to consistently work.  In my mind, suicide would not have been an act of selfishness, but instead an act of desperation, with no motive other than making the pain end.

The other frustrating part of this news cycle is the immediate need to find someone to blame.  Reports are coming out that she and her husband had been planning to file for divorce.  Critics are immediately theorizing that her husband mistreated her, or somehow drove her to this.  I believe this is another terrible side effect of our death-phobic society, namely that we always have to pin liability on someone when there is a tragedy.  I get it, because I did it when Patrick died.  I blamed myself for not getting him into a clinical trial, for not noticing signs of illness sooner, for honoring his request to stop treatment when he decided he'd had enough.  The truth is, however it arrives, death eventually comes for us all.  We would do a lot better to recognize the tremendous shock and loss that her family is going through than to entertain our sick and useless instincts to assign fault.  Blaming her husband is no more true or useful than blaming her.

When someone is injured in a car accident or has been diagnosed with cancer, most people are quick to offer condolences and help.  Not so with often invisible mental illness.  If one is brave enough to admit such suffering, she is often met with blank stares, awkward silence, and changing the subject.  We are told to stop wallowing in our grief.  It is suggested that all we have to do is exert our willpower, and - POOF! - all will be fine.  We are not able to take time off of work to heal because of deadlines and quotas.  Most people don't know where to go to get help.  People who are in marginalized and under-served communities have no resources for mental health because it is one of the least prioritized medical issues.  Although there have been some improvements over the years, the stigma about mental illness strongly persists.  Then, someone dies by suicide and we are all shocked.  There is no understanding that the person was sick.  Instead, people speak in hushed tones at the funeral, speculating about who is responsible instead of celebrating the life of someone who was invariably so much more than the way she died.

To those of you who have not been touched directly by mental illness, consider yourself fortunate because almost everyone has at least some attenuated connection.  Instead of obsessing over the details of someone's suicide, try to exercise compassion for everyone involved.  Hold space for the pain of those who are grieving.    

If you are struggling with thoughts of suicide, please consider reaching out for help.  Call the National Suicide Prevention Lifeline at 1-800-273-8255.  Most importantly, know that you are not alone.  I have been within seconds and inches of ending it all, and I consider it mostly luck that my fate has so far turned out differently.  It is never too late to get help, until it is.

My heart goes out to Ms. Spade's husband, daughter, family, and all those who loved her.

Have you ever had a moment where all of a sudden, the chaos of your life quiets and everything is perfectly calm? As if you've been given a glimpse through a window that previously was made of opaque, frosted glass, but without warning is now crystal clear? I haven't had many of those moments, but when I have they have changed the course of my life in drastic ways. As I write this, it's happening, and it feels too important to keep to myself.

I have written a lot about the pain of my life experiences - getting sober; the constant trials of an eating disorder; falling deeply in love and then losing my husband after his brutal battle with brain cancer; leaving my chosen profession as an attorney because it felt so unaligned with my soul's purpose; humbling myself as I stood on the brink of financial ruin; and letting go of my attachment to who I thought I was in order to discover and fully embrace who I am. It has often felt like I am dragging myself face-first through the mud, fingers bleeding, dirty, lonely, and broken. I have felt so lost, carrying the constant weight of having and endless abundance of love and healing to share but with nowhere to direct it.

There has never been any question that my own suffering would somehow be transformed into a powerful message of hope and redemption that can help others navigate their own trials. I have firmly believed that I am on a journey to turn my pain into purpose - so much so that this is tattooed on my skin! - but I couldn't see past the immediate physical and emotional misery enough to feel the warm light on my skin that is provided by complete surrender of one's will to the Universe.

Until now.

I am not ready to talk publicly about the specifics of what I see for the future. Honestly, the details are not even important - details change all the time, and to obsess over them would be taking this divinely inspired message hostage and asserting my will over the outcome. Maybe it will materialize exactly how I am picturing it. Maybe it won't. For once, it doesn't matter to me. What is important is what is happening in this moment, and that is what I want to share.

I am fully present in my body.

I feel like my heart is bursting.

I have deep reverence for every one of the scars on my heart because they will allow me to change the way others approach their own suffering.

I respect my human form, and look at it with immense gratitude for carrying me in spite of the abuse it has been subjected to in various forms for many, many years.

I honor the perceived imperfections of my physical appearance, from the wrinkles on my forehead to the extra weight that doesn't seem to want to leave my waistline, because they are serving a purpose that I may not yet understand.

I am not afraid of what will, or what won't, happen.

I don't care if my life looks "successful" by conventional American standards.

My heart is open to moving forward and receiving love in whatever form that takes, with the unmitigated understanding of the risks involved.

I am allowed to dream bigger than what seems possible, because I am capable of handling anything that is thrown at me.

I can heed the call to a higher purpose because the Universe will provide me with what I need, which may or may not be what I think I want.

I don't have to ask myself or others "Is this weird?" when I am getting direct guidance from God, because I have learned to trust that I am not being steered anywhere that will cause me harm.

I don't have to understand why everything happens, or obsess over making sense out of it all.

I have been being prepared to take this seemingly drastic turn in my life for years, and it has taken every one of the events that I thought might kill me to make this possible.

Now, I am completely aware that I have not somehow evolved past the point of crippling self-doubt that will inevitably attempt to derail me. I am far too familiar with my tendency to sabotage myself when things get scary to believe that magically this has been removed. I also know that the subconscious mind hates change and I will (not may) struggle as I begin this new walk. But today, I have been given a reprieve from the incessant inner critic. Instead, I hear the voice of a confident, talented, loving woman encouraging me to breathe into this moment of peace that has been a long time coming. She is louder than any other noise I hear, or any distraction I feel. And she's here to stay.

It was the biggest leap of faith I could possibly imagine.  After almost eight years, I left my job as a litigation attorney without a back-up plan because I knew deep in my bones that I could not stomach the work I was doing for a moment longer.  I was ill in a myriad of ways – I had been diagnosed with rheumatoid arthritis; I underwent back and elbow surgery the same year due to chronic pain issues; I had debilitating migraines; the list goes on.  I also frequently suffered panic attacks and bouts of depression that rendered me unable to leave my bed, contemplating how much better off my loved ones would be without me.  I had been meditating for several months and it became clear that I would not be shown the next step until I let go of my job and everything that came along with it. 
 
Now, for a girl who never does anything without a Plan A, B, C and usually D, this was an enormously uncomfortable challenge.  How would I pay the mountain of debt from my school loans and the bills that resulted from my husband’s illness and the fallout after his death?  Where would I live?  What was I going to do?  Most importantly, who was I without my identity as an attorney?
 
I did not have answers to any of these questions when I decided to quit, but the physical and emotional consequences of continuing to do something that was so diametrically opposed to the woman I had grown into through my experience as a care partner for my late husband that doing barely felt like a choice.  I could either continue bartering my life away in 0.1 billable hour increments that made me feel like I was selling my soul with each passing hour, maybe making partner at my law firm and perhaps hitting all the “right” markers in life, or I could do the scariest possible thing and leave it all behind for the unknown.  It was a classic conundrum of following the devil you know versus the devil you don’t.  Ultimately, I opted for the latter.
 
The consequences of my decision were immediate and drastic.  Gone was the nice apartment in the suburbs; instead, enter a storage unit piled to the roof with the things which at one point seemed so important, and the incredibly humbling experience of moving home with my family at 34 years old.  In leaving the area where my husband and I had lived, gone, too, were the daily reminders of our lives together.  I saw friendships which I believed would withstand the test of time and distance fade away once the convenience of shared interests was gone.  I had to call many of my debtors and explain my circumstances, asking for a reprieve so that I wouldn’t have to file for bankruptcy.
 
Once the daily distraction of playing a character I was not ever meant to portray was over, my own obsessively self-critical mind resurfaced with a vengeance.  Now, it had always been there, but without anything else to take up my energy I became laser-focused on my flaws.  Even though I could see the absurdity of all of it, it felt like there was nothing I could do but watch in horror as my “inner asshole” pointed out every ounce of extra fat, the ever-increasing number of wrinkles on my face, my too-thin lips, etc.  The mean girl that lived in my brain finally had free-reign and she was going to make the most of it.  I was not entirely sure that she would not destroy me before this was all over.
 
Every day I entered my meditation not from a place of quiet openness, but rather labored anticipation of when I would finally receive the inspiration I was looking for.  I thought if I sat with the Universe and behaved well enough, I would get the answers I was looking for – and in a timely and appropriate manner, by my definition!  I wanted desperately to be shown what job I was supposed to find, the one that would perfectly support my desire to use my tragic and profound life experiences for the benefit of others while also providing enough of an income to live on comfortably.  First, days passed… then weeks… then months.  No e-mail from God came through with the answers I was looking for.  Instead, I was continually asked to recover from the trauma of the last few years, rest and wait.  UGH.
 
Aside from my negative self-image, the idea that in order to be loved and valuable I had to prove my worth was pervasive.  My fear of financial insecurity was almost too much to bear.  The more time went by, the more tempted I was to give up on the strong inner knowing that I was meant for a bigger life than the one that safely fit inside the lines but made me woefully unhappy.  I spoke to a legal recruiter who had endless amounts of options for me, if I was willing to sacrifice my dreams and play by the rules I had outlined for my own life years earlier.  I have been tempted to do so more than once.  “Maybe it will be different this time,” I hear myself saying repeatedly.  “Maybe because I have changed, my perspective will be new and it won’t seem so bad.”  But, even typing that out now, I get the restless, sick feeling in my gut that alerts me when sirens of danger are sounding.  I know what the definition of insanity is, and I don’t want to go down the familiar road to inevitable misery.
 
The only thing that seems to make any sense in this period of change is to focus on what my true passions are.  Starting this blog might seem like an insignificant step to some, but it has allowed me to use my love for the written word to explore my own heart in ways that I was unable to before.  I traveled to Chicago for the annual meeting of the American Association for Cancer Research as a member of the Scientist <-> Survivor Program where I learned about the science of cancer and its treatment so that I will be a more effective advocate.  I spoke at a first-ever “Cancer Perspectives” event to a company that is designed to support patients through cancer treatment and survivorship.  As I write this post, I am on a flight to Washington, D.C. to participate in “Head to the Hill” with the National Brain Tumor Society where I will meet with my congressional representatives to push for research funding for the brain tumor community.  I am the busiest unemployed person I know of.
 
In spite of the continuing challenges, I am more grateful every day for having enough faith in myself and my own intuition to abandon the path I thought I was supposed to be on.  I worry less about where I am going to end up and am more excited that I could move literally anywhere and do anything.  My inner asshole still pokes at me, but she is quieter these days.  I am beginning to know who I am and what is important to me, both of which entirely eluded me after Patrick died.  I actually can see the value in who I am without it being tied to what I do.  I know that I have personal and professional experience that will make me a huge asset wherever I end up, be it in an ashram or another law office.   And, perhaps most importantly of all, I no longer worry about what anyone else thinks about the choices I am making.  This is the freedom I have always been searching for in jobs, men, clothes, and “stuff.”  I am almost convinced that who I am has nothing to do with any of those things.  Almost.
 
I heard recently, “You don’t have to do something just because you said you would.”  Changing course doesn’t mean that I am flaky or that I am a failure for not following through with my plan.  It means that I have changed because my life was irrevocably changed the day Patrick had his first seizure. 
 
I understand that not everyone feels like they have the “luxury” of making drastic changes like those I have – I have gotten this reaction a lot from people in my life to my choices.  They have bills and responsibilities!  I get it.  I thought I was destined to be imprisoned by these, too.  The truth is, you always have a choice.  It might mean having to humble yourself, change your lifestyle, and giving up things that are not only important to you but define you.  It will hurt.  It will be terrifying.  But it just might be the best thing you ever did.

​I involuntarily became a part of the brain tumor community after my husband Patrick’s deadly glioblastoma diagnosis in 9/2014.  About a year after he died in 7/2015, I became an advocate and began working to advance progress toward better treatments and ultimately a cure by pushing for more research dollars and meeting with my congressional representatives to push public policy aligned with that goal.  The most meaningful part of the work I am doing has been the relationships I have built with other advocates who come from all areas of the brain tumor space: patients, care partners, scientists, physicians, and others impacted by the life-changing and often life-ending diagnosis.  
 
I have learned so much by interacting with those one the front lines of the disease, and the lessons extent far beyond the brain tumor landscape.  One of the most controversial topics that I often see people bravely confronting is end of life and one’s wishes surrounding the same.  I see courageous patients posting their own advanced directives on Twitter to the #BTSM (brain tumor social media) community to educate others on what these look like.  I listen to conversations being had about quality of life versus extending life merely for the sake of quantity of life.  I watch people confronted with the very same illness that my sweet Patrick was who are navigating the progression of the disease with such grace and dignity that I am in awe.
 
In our highly death-phobic society, it seems that those tough conversations are rarely had until one is faced with mortality itself; but even then, it often feels like too much to face.  In the most tragic circumstances of all, those discussions are never had until it is too late.
 
My experience with Patrick’s illness and death was, unfortunately, just such a tragedy.  Before Patrick suffered the first grand mal seizure that put him in the ICU and ultimately led to his diagnosis, he was the picture of health.  At age 54, Patrick had not had an alcoholic drink in over 25 years.  He quit smoking almost two decades earlier.  He rarely, if ever, went to the doctor, not just because he was stubborn but because he really had no need to.  He exercised regularly and his diet consisted primarily of high quality protein, cruciferous vegetables, and fruit in limited quantities.  He looked easily ten years younger than he was – the man had six-pack abs, for crying out loud.  He worked in tech sales at a San Francisco start-up company and regularly traveled the world.  I was many years his junior, so for similar “I’m-healthy-so-let’s-not-talk-about-sad-stuff” reasons, we never had a conversation about what we wanted in the event something went terribly wrong for either of us.  I had learned a couple of months before his first seizure that Patrick did not have a will or trust set up.  As a lawyer, this seemed extremely irresponsible given the fact that he was previously married with two young adult children, and I had urged him to get this done, but that was as far as our discussions went and he had not heeded my advice.
 
We had no reason to suspect that Patrick would go from a vibrant, independent provider to a person who required 24/7 care overnight.  But that’s exactly what happened, and we were not ready when it did.
 
When Patrick first went to the hospital, we did not discuss the potential serious consequences of a dire diagnosis because we were told that he did not have one.  The well-intentioned doctors were wrong, and within weeks Patrick underwent a craniotomy and received the diagnosis of GBM, a Grade IV tumor with a median survival rate of 15 months.  By that time, I was so shocked, confused, devastated, and otherwise befuddled that the idea of having a conversation about Patrick’s wants and needs for his future given the circumstances was almost too painful to broach.  It was not until the fourth hospital Patrick visited in the first two months that the first doctor even asked us whether he had an advanced medical directive, and suggested we get one in place, which we did.
 
I know that I was a large part of the reason we did not have clear and unemotional dialogue about the realities we were facing and what Patrick wanted.  I had the common but extremely naïve belief that having those conversations meant that we were “giving up” on Patrick’s treatment, and resigning ourselves to the fact that he would not make it.  I remember one time Patrick looked at me with tears in his eyes and said “I want you to find a nice man, Lisa.  You’re going to have to date again someday…”  Instead of responding with kindness and empathy, I shut down the conversation and sternly cautioned him to not think that way because he was going to make it.  He quickly backed off, and never brought it up again. 
 
In hindsight, this interaction was one of the biggest regrets I still have from that time.  I wonder how different things might have been if I had been willing to hear him.  I wonder if he would have been in less emotional pain if I had allowed him to talk about the fact that he was likely going to die.  I wonder if my blatant refusal to accept reality made it harder for him to accept his own death.
 
It isn’t just talking about dying, either.  It’s also talking about what happens afterwards, to the ones left behind.  If we had, I wonder if I would have suffered less once he was gone.  I was constantly walking around in anguish wondering how Patrick would feel about how I was trying to move forward and live my life.  How would he feel about me leaving the home we shared?  When should I stop wearing my wedding ring?  What would he think if I ever decided to date again?  I didn’t know how to honor our love and be okay at the same time.  I didn’t know, because I didn’t ask when I had the chance. 
 
Our failure to have those important conversations put an extraordinary amount of pressure on me has Patrick’s primary care partner. I arranged for him to see a lawyer to set his affairs in order, but because of complicated dynamics with Patrick’s family, I sent a friend with him to the appointment to avoid the appearance of untoward influence.  This resulted in his wishes being incorrectly outlined in the documents, causing additional conflict among the family for almost a year after he died.  I second-guessed decisions about his medical treatment, which by the end I was completely in charge of as his medical proxy.  The constant pressure of Patrick’s illness and feeling responsible for my failure to “save him” was a huge contributing factor to my diagnosis with PTSD months after his death. 
 
Waiting until the end to talk about the end poses the unique risk that your loved one won’t be able to meaningfully participate in those conversations.  In Patrick’s case, his tumor caused him to suffer from expressive aphasia, which is the partial loss of ability to produce language, in his case due to his seizures. As a result, communication was often difficult and it was not always clear that his words lined up with what he wanted to say.  This worsened with his disease progression, and I often think about how the legal issues might have been averted if we had done this early on. 
 
By avoiding tough conversations, you can also open the door to criticism and skepticism from others who question whether your loved one was in their “right mind” when decisions were made.  Although we had been planning to get married long before Patrick was ever sick, Patrick did not discuss this with his family for fear of what they would think.  We decided to get married towards the end of his life when we realized we did not have much time left.  I remember getting a call from a social worker at Patrick’s medical facility after we had decided to get married.  She told me that Patrick’s sister was trying to get the doctor to make a statement that Patrick did not have the legal mental capacity to agree to marry me.  His doctor made it clear that although his ability to express himself might be compromised, he was still able to make important decisions. It was a painful and unnecessary diversion for what was otherwise a beautiful and special day.
 
There is a fine line between having faith and hope for a positive outcome and being completely blind to reality.  Hope and delusion can be two sides of the same coin.  I was well-intentioned in my denial.  I wanted to “keep the faith.”  I did not want either of us to give up.  Nonetheless, our failure to plan for the worst while hoping for the best made everything so much harder than it needed to be.
 
The truth is, none of us is getting out of here alive.  It feels like we are all walking around avoiding having these difficult discussions with others, or even acknowledging how we feel about this ourselves, because we are afraid talking about it will some how hasten death’s arrival.  The kindest gift you can give your loved ones is clarity about what you want.  Remove the guesswork.  Grief can make even the best people angry and spiteful, and behave in ways you would never imagine.  Do not let your fear of dying give anyone room to question your wishes.

"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.