Life is Beautiful

“Life is Beautiful” directed by and starring Roberto Benigni is the story of a devoted father and his son who end up in a Nazi concentration camp.  In an attempt to hold his family together and help his son survive the horrors of the camp, the father imagines that the Holocaust is a game and that the grand prize for winning is a tank.  At the time the movie came out I didn't have any children, but just watching the previews and imagining what the father had to go through, the pretending and the elaborate charades, it was unbearable to watch, let alone consider being in that position myself.  And the title?  I knew what it was suggesting but I just couldn't get there at the time.  I love movies and will watch most anything across all genres.  I've never seen this movie and I probably never will.  At first I just didn't want to "go there" but now, it's a moot point.  

See now, I get it.  Life is beautiful.  Although I haven't been through anything nearly as horrific as the Holocaust I know what it is to want to protect your children.  Protect them from seeing their young, strong, capable father slowly wasting away in front of them.  Shield them from the realities of depression and cancer and chemotherapy and grief that encroached on our lives and their childhood.  And yet.  To deprive them of these basic truths of their lives would have been to deprive them of all the beauty that is life.  I don't need to see the movie because I've lived that story.  I don't need to watch it unfold on screen and ask myself "what would I do in a similar position?"  I was refined in the crucible of Phil's unrelenting illness and death.

I am a mother and although my first instinct will always be to protect my children, I also take into consideration what is ultimately best for them.  When a teachable moment comes along I seize it, because in their lives, as in mine, it is what it is.  With Phil's cancer, we were all dealt a shitty hand, he more than anymore.  But I tell you, the way that man played his hand was inspiring to watch and be a part of.  I am changed forever.  If I'd shielded Bennett and Olivia from that by pretending or sugar-coating it, it would have diminished what he was teaching them in the face of his greatest challenge and what I believe will be some of their greatest life lessons going forward.  Phil was showing them that life is beautiful and worth fighting and suffering greatly for.  He was showing them that love is beautiful, that family matters, friends matter, faith matters.  He taught them how to suffer with dignity and die well.  Phil lived a life of love and was a good father to his children to the very end.

Thank you Phil, you are beyond beautiful.

   

Steel Nation

My Sunday Best

It's quite easy for people to find our house when coming over for the first time.  We're the one's with a Steelers banner hanging in the front yard.  We understandably stirred up some interest with our neighbors when we put it up and it's definitely been a conversation piece.  Although The Chargers aren't remotely on par with The Steelers we still have some die-hard fans here.  My parents for one have been season ticket holders for over 45 years.  They even flew to Miami for that joke of a Super Bowl.  My brother Stephen drives down from Redlands (a couple of hours away) to enjoy the season tickets next to my parents which he bought from their best friends when they became available.    

Until we put up the banner we hadn't heard much from our neighbors.  The street is wide and quiet and though folks had waved and smiled as they drove by no one had actually introduced themselves yet.  Something about hanging that banner tipped the scales and one by one they started making their way over to say something.  Comments ranged from "what's with the banner?", to "that's my son's favorite team", to my personal favorite from my next door neighbor's father-in-law, "the Steelers made me a lot of money in the 70's!"  

Inevitably Bennett or I would explain why we had the banner up in the first place.  Our Daddio was from Pittsburgh, he had died in November, and we all bleed black and gold.  Anyone who had even the slightest problem with it would have quieted down after that I'm thinking.  I married in to this passion for the Steelers and it's a great legacy from Phil that I share with my Pittsburgh friends.  It's hard to explain to people who haven't experienced it - being a part of Steel Nation.  But it is everywhere.  The kids and I see Steelers bumper stickers, license plate holders, T shirts, paraphernalia of every kind down here.  

To be fair, tomorrow I'll be wearing my #14 Dan Fouts jersey when The Chargers take on The Raiders (boo hiss), having been raised watching the Titans Kellen Winslow, Charlie Joiner and John Jefferson in the era of Air Coryell.  However, when the Chargers have six Super Bowl rings that's when I'll hang their banner in front of my house.

Game Changer

Ch-Ch-Ch-Ch-Changes

After writing the last post I went back and read the blog I posted at this time last year.  It was very instructional and surprising at the same time.  It reminded me to consider perspective yet again.  As I well know but often forget, things can change very quickly, in a matter of minutes.  Other times they change imperceptibly, particularly when we are marking time and hoping for a specific outcome.

This time last year Phil had a normal bone marrow biopsy and a PET scan showing that his lymphoma had regressed and he was responding well to his chemotherapy.  There was a small area in his chest which appeared to be residual scar tissue but otherwise he was looking fairly good.  We were referred to UCSD for a bone marrow transplant consultation where we set those wheels in motion.  We were cautiously optimistic even though the lymphoma continued to plague Phil with effusions.

And it was around this time last year that Phil went to Atlanta for a buddies trip - to see his high school friends whom he'd been getting together with for years.  It was a calculated risk, that trip.  He had developed new swollen lymph nodes prior to his departure which we weren't certain about.  By the time he came home from that trip he was drastically altered.  He came home with another pleural effusion and over the course of the next 2 1/2 months he'd deteriorate quickly despite an incredible will to live.  

Two and a half months.  I don't recall things changing so quickly or declining so rapidly.  Each day was crammed with so many things to attend to, appointments to keep, endless emotional ups and downs.  It was all so surreal and time took on the quality of suspended animation.  It's no surprise to me that I lost sense of time.  As my counselor so aptly put it this week, "don't be surprised by your capacity for storage.  You had to put a lot of stuff away for later because of the chaotic nature of your life at that time."  Well, I've been doing a good deal of unpacking lately.  All of the sudden there seem to be a lot of packages showing up on my front door. 

I don't think it's any coincidence that it is happening as I am rounding the bend into the anniversary of Phil's death.  The routine of school, the approaching holidays, the heat and humidity - everything conjures up memories of those last days.  As I lit a candle the other day the scent of it instantly took me back to our rental house on Lomita.  I saw Phil in repose on our red couch, his feet swollen and propped up on pillows, in his hand the cup of "juice-water" he continually drank in those last days.   I felt the bond of the circle of friends and family gathered there with us, surrounding him with immeasurable love and care.  Those last days were time multiplied.  

Now, as I go through the stuff that's showing up for me (my storage unit so to speak) I'm increasingly anxious to get through this year of firsts.  To get it over with and start into the next year, the year after Phil died.  Yet when I pause to reflect I realize I don't want to miss one moment of the next 2 1/2 months this time around.  At this point last year I was inconsistently available for my children's needs emotionally.  Thankfully there were other wonderful adults who stood in the gap.  Now it's just us, Sally, Bennett, and Olivia day in and day out.  

In these last weeks something subtle and sweet has been slowly developing between us a midst the anguish and anger we feel ~ feelings we too quickly take out on one another.  We are all quite tired.  We are collectively ready for a change.  For our little threesome a crucial part of moving forward in change will require that I consistently be there for them as the painful and sad moments ahead intensify.  "Life is change, growth is optional."  I want to continue to show them the way through to growth and healing.  May it be so.

Lost in the Supermarket

Yesterday I found an old notebook that I used to keep track of things when I was preparing to move down here from WA.  It held lists of house repairs, donations for the Goodwill, things to save for our garage sale, crap to haul to the dump, items to give away to friends.  There was a tremendously long TO DO list in Phil’s handwriting that I had dictated to him while we were driving in the car one day.  This was followed by page after page of errands that I had run in the days and weeks leading up to our departure ~ groceries, packing lists, dentist and doctor visits, car tune ups, and friends to whom we’d need to say good-bye.  There was even a pro and con list of reasons for moving to San Diego.

And then, on one lone page, tucked among these lists, was a notation long forgotten. 

Phil – another illness?

You see, at that point Phil was already in the beginning stages of what would eventually be diagnosed as lymphoma.  But at the time his symptoms were non-specific, very uncharacteristic for lymphoma and frankly, confounding.  While packing up and making the transition to CA he and I were also trying to figure out what was going on with him.  He saw his internist, a neurologist and a specialist in Seattle.  He went to the ER in incredible pain.  The best we could come up with by the time we left was that he might be developing another autoimmune disorder.  In reality, it only took about 6 more weeks for the lymphoma to clearly declare itself.

I’ve talked about my little journals before.  How they held my notes during his illness and contained my brain when I had little to no sleep and couldn’t trust myself to remember details.  They funded each and every blog post I wrote during that terrible hard time.  They are a record of his treatment, his intense suffering, his humility and ultimately his release.  They are sacred because they contain notations like the one I found yesterday that might pull me up short, but remind me of other times and other places that were real and were different.  They show me that time passes and things do change.  More on that later. 

There is a song lyric that Phil would quote from time to time when was overwhelmed or couldn’t make a decision.  “I’m all lost in the supermarket.”  Such genius lyrics these are, from The Clash.  It became a code between us when we were at a loss, literally or figuratively.  We loved the idea of feeling lost in the "supermarket", a metaphor for our everyday life.   When you can't understand what's going on with you or in your relationships and that stops the normal flow of your days - the "shopping" as it were.

Well, Daddio, I'm all lost in the supermarket.  

I feel like this more often than I'd like to.  Suddenly it's like I can't do what I was easily doing everyday and it's because of something that's lacking in me, and those voids aren't easy to fill.  What's lacking stems from the tremendous hole in my life where you used to be.  That’s obvious of course, but I'm struggling to understand how I lost so much of myself in your death.  I have been profoundly diminished.  

I still can't bring myself to hang any pictures of Phil in the new house.  Like a bad part of town or a corner of the woods you wouldn’t be caught in after dark, I've been skirting around that area of life for the last little while.  I've given myself lots of reasons why I haven't put any up but truth be told, I've been hiding out.  It's just too painful.  There are a few scattered pictures sitting on shelves but the entire folder full of pictures that I collected for his memorial sits untouched in my fire proof safe.  And I can’t bring myself to hang our wedding picture.  It still sits in my closet, right where Trenna put it when we moved in.  One small example of all lost in the supermarket.  

Phil is gone.  Now we are three. I get up every day and lean into the future with my kids.  I'm much more easily frustrated. I lose my temper and yell more.  I pick my battles and try to do my best.  It's ridiculously hard being a single parent, being a 45 year old widow, desiring to be fabulous on occasion all the while recovering from a nuclear disaster.  I do have good days, don't get me wrong and we are making progress.  I’m getting closer but I’m also shocked by where I find myself.  I don’t judge it, but I’m shocked by how little progress I've made.  The relief of his death and the end to his suffering has now passed.  Now I'm on to a deeper grief ~ missing the healthy and vibrant man I loved and lived with all those years before.  I’m just beginning to really grieve.  It's a good, hard and very sad development.  

But I trust my journals, things do change, eventually.  They always do.

Hard Love

Hey Daddio,

It’s July 22, our wedding anniversary.  Seventeen years ago we stood together in my parent's beautiful garden and stepped into our adulthood together, right?  We both knew when we met each other that “this time it was different” and we got serious about dealing with our shit.   I want to thank you for taking the lead in that, for being the one to say it first, that we needed to have a spiritual foundation in our lives as well as identify the issues that would characterize our life together.  You were right about so many things and were always willing to talk about them, admittedly sometimes for far longer than I wanted to, but you were a great communicator and I was blessed by that more often than not.  Your insights are sorely missed around here. 

Remember our vows?  They were not particularly conventional: everything was in there - in sickness and health, good times and bad, 'til death do us part and all that.  But we also promised to annoy and disappoint each other, to let each other down, to frustrate and fail to deliver and totally drop the ball.  We knew who we were and how we were and we went in with our eyes wide open.  And being imperfect people, all along the way, we delivered on our promises to annoy, frustrate, disappoint, anger, and fail one another, again and again.   

Still, despite all that,we had no idea what a crucible our marriage would turn out to be, did we?

  

Do you remember that wedding we went to when the pastor said, "There are hard marriages and there are bad marriages”? The unspoken message being I guess that the “good” marriages are the hard ones?  

We had a hard marriage Phil. It wasn't all bad and it wasn't anyone's fault.  We were just two imperfect people doing their best to deal with the crap that life threw at them; working to overcome the worst parts of themselves and striving for deeper intimacy, hoping to operate with more kindness in relationship.  But damn honey!  We had 8 miscarriages, you had so many ridiculously unfair health issues, and our chosen profession, though rewarding, was incredibly stressful and we had some seriously difficult employers. I struggled with Seasonal Affective Disorder for far too long and just as we were starting to turn a new page in our life together, the unthinkable happened. 

In more ways than I fully appreciate that’s when our marriage really started to get good.  When everything became crystal clear all the accumulated bullshit of the previous years - the petty grievances and the real ones - were dropped by the side of the road.  Stripped down to the bare essentials of who we were and staring the possibility of “‘til death do us part” brought us to an intimacy that we’d never known and we came to see and know each other in a new light.  We had everything to lose, everything to gain.  For me, I experienced and understood what it meant to really live selflessly for you.  It was one hell of a way to get to that place of unconditional love, a place I thought I’d been before.  Believe me, I hadn’t. 

Looking back now, I have to admit to you that sometimes I was so spent, it seemed like the most exhausting work to keep at it, to stay in relationship.  It would have been easier to just withdraw into myself.  To turn away, close off.  But you pursued me and continued to talk to me, wanting to connect and be in relationship until your dying day.  That was always you Phil.  Always vulnerable, always trying to make it better, always pursuing.  

In the end, somehow, while enduring chemotherapy and the ravages of an all out assault on your very being you found the strength to continue to pursue me when I was exhausted, spent and at times, disappointing.  We found a way to pursue and find each other in the moments and in the reprieves.  Ultimately, I am proud of what we accomplished together.  They were sixteen great, hard loving years.  We became better people during our life together.  We have an incredible son and daughter who live on with fierce spirits just like ours.  They are doing fine and will do great things with their lives, because of you and I in them.  They will have lives full of joy and sorrow and laughter and love because that is what life is!  Like us, they will know who they are and how they are and will live and love with eyes wide open.

Phil, in your absence, and with no more chances to share in the fruits of our mutual labor with you, it now seems obscene to complain at all.   I count myself a victor who came away from our beautiful crucible with a lion’s share of lessons learned.  How I take them forward will be the way I honor you and the life we shared together. 

Happy Anniversary, you were an incredible and faithful partner. Thank you for loving me hard!

The Rest Is Still Unwritten

I’ve heard memoirs described as a roadmap for being a human.  Memoirs tell others what it felt like to have a certain experience – the good ones don’t claim to be the authority on that experience but they are bold and certain in their own particular truth and honesty.  A good memoir, in my opinion, when it’s finished, convinces you that it will be like this for you too perhaps, when “it” happens. Or, I know you know what I’m talking about because you felt it, and maybe, just maybe, you couldn't put it into words, so here the words are for you, finally.

For me and what became my cancer memoir, writing about Phil and the long process of his sickness, degrading health, the shock and even surprise when his death itself occurred ~ both the certainty that the suffering would eventually end and the hope and confusion about when, why and how, those parts came relatively easily.  The way the world always seemed to be cast in shadow offered endless perspectives to draw from for insight and commentary.  But now, most days there’s not much else I can say about it, Phil’s death.

Now I am in the land of grief – the process, the journey, the wandering.  There are no more facts or figures to report.  There are no more updates or data to interpret.  The need for my clinical skills is long past and I am left with the plain story of survival, coming to grips with the fact that my life will forever be divided into “before” and “after”.  Even my children are moving on in their grief, with the resilience of youth and the blessing that time affords them in the abbreviated economy of their lives.  My old life ended at the same moment that Phil’s did and it will never come back.  The loss of a spouse has been described as the loss of one’s “present” ~ I so totally get that. 

 I look around now and can’t help but see how people move through life as though their days aren’t numbered. As I continue to hear news of deaths or tragedies and how they shock people into another mental state, “the shallowness of sanity” is exposed again and again, just as it was for me.  As Alice went “through the looking glass”, so too did I undergo a radical change in perspective.  There is no going back to life as I lived it.  There were a multitude of things I set down in order to carry the weight of Phil’s illness and death and I realize I don’t ever need to pick them up again.  I consider that insight a divine gift, a silver lining to all of this – a very costly, but divine gift. 

How incredible too that this new mental state offered me an opportunity for tremendous growth!  As my wandering gains focus in this new headspace I have choices I get to make.  I have been given a fresh start, a new perspective, and what lies ahead is my future, full of possibilities and endless potential.  I’ve been blessed with another precious gift from this wreckage.  Yes, the wreckage remains but I am learning to dive it better with each descent.  I'm finding that I can come up for air more often and for longer periods of time.   Yes, I am grieving the loss of my "present" life but what I have gained is the expanse of the rest of my life.    

For me and my house, the rest is still gloriously, unwritten.   

Camp Erin

I'm not entirely sure what I expected to hear from Bennett when I picked him up from camp on Sunday but I knew he'd have an incredible story to share.  I'd made arrangements for Olivia to be with friends so he and I could have the drive home alone together.  She and I had driven him to Camp Erin on Friday after school - a bereavement camp for kids who have experienced the loss of a loved one, sponsored by The Moyer Foundation and San Diego Hospice.  We had to straighten out his name tag (his first and last name are always getting switched around) but it was smooth sailing after that.  It was classic Bennett from then on, "Don't let the door hit you in the butt on the way out Mom, I've got this".  He was all set to make friends and "do camp".  And do camp he did.  

By all accounts, Bennett stepped deeper into himself this weekend and tempered the core strength and self awareness of his that has burgeoned this year.  One after another his counselors told me what a pleasure it was to have him in their cabin and what a natural leader he is.  They told of Bennett putting his arms around kids who were struggling with their grief, just sitting with them or encouraging them with a kind word.  And of how he led their cabin in the "GaGa" tournament victory (some high-action ball game, the hit of the weekend for all the campers)!  A wounded healer and athlete, he is his father's son in so many, many ways.  

On the way home Bennett filled me in on all the fun stuff they did - the canoeing, the pillow fights, the food, the farting, and the ghost stories.  He shared about the grief work - the memory board where he put Phil's picture and told his story, the lanterns they built and sent floating into the lake, the art projects they did together to commemorate their loved ones.  And about losing his voice because he laughed and yelled and screamed so much.

And then he turned the conversation to his whole life, outside of camp.  The things he said and the way he connected the dots and made sense of who he is and what's happened to him thus far in life... amazing.  As his mom, I'm not worried.  My son knows who he is.  He isn't looking to anyone outside of himself for validation or approval.  

He loves his dad and misses him but his life isn't going to be defined by Phil's death.  

As I told him, he is so far ahead of the game with that going for him.  I am so proud.  So in love with him.  So thankful.  

God is good, all the time.