Thoughts At Large

Passionate thoughts on random topics

Category: 2014

Angry

CancerI am so tired of fighting (and losing to) cancer. First it came for my wife, and we moved cross country to fight it. Then it came for my father, and all we could do was poorly manage his pain until he succumbed to it. After fighting for seven years, my wife died in September. Now it is taking my dog, who’s already fought it twice before. What kind of insidious disease comes after a dog? There is no rationale, no justice, and no God. How could God allow my father to suffer so much? How could God steal my wife’s future? How could God punish a dog with three different types of cancer? If there is a god, he’s either feckless or belligerent. This is my version of Pascal’s gambit. If there is a god, he’s malicious. If there isn’t then, chaos theory reigns and so it goes. Those are the only two choices. There is no beneficent God. There is no evidence to support believing in one.

I can’t remember the last “normal” day we had. Every day for the past seven plus years has been lived in the shadow of cancer. The president talks of a “moon shot” program to cure cancer. I don’t believe it will ever happen. Nature is too wily. Nature will always one up science. And we still know so little about it. I think doctors know that they know so little, and I think what they still don’t know they don’t know could fill a football stadium. We are nowhere near curing cancer. I’ve read Siddhartha Mukherjee’s Emperor of All Maladies, Susan Sontag’s Illness as Metaphor, Joan Didion’s The Year of Magical Thinking, Elizabeth Kübler-Ross’ On Death and Dying, and Christopher Hitchens’ Mortality. The only thing in common amongst these books is that we suffer pain and die. Treatment and cure are fantasy.

I am angry, livid, more enraged than sad, more angry than tired. I miss my father. I miss my wife. I can only watch as my dog suffers the painful effects of his squamous cell carcinoma. That’s a fancy name for something that will not kill him, but will force us to euthanize him within the next month or so while causing him extreme pain in his jaw and mouth. Again, what could he have possibly done to deserve this? Fuck cancer. Fuck God. Fuck me.

Bad Poetry and Honest Feelings

Every so often, now and then, cancer takes another one I love.

I am never to see them again. I am told they are living above.

I need them to help me live, I need them to help me love.

I miss the love that they give, but I am limited with them up above.

I am sad now she’s gone. There’s no limit to my grief.

I will be mad now she’s gone. Don’t force me to keep it brief.

Dante and Milton, Shakespeare and Browning, they paint pictures of heaven and smile.

But every day I feel I’m drowning because I miss her over every mile.

There is no comfort, there is no relief. There is no respite for my heart.

There is no solace; there is only grief because I loved her from the very start.

Cancer is evil, twisted and sick. Chemo is barbaric, radiation burns.

Killing from inside, impossible to lick; surgery failed and now my heart yearns.

We built a future, we worked so hard. We built a future full of cash stashes.

We planted the roses, we tended the yard and now I must rebuild from the ashes.

With the future I have now, I know I’ll be alone.

I seek a new path somehow; coming to terms with an empty home.

If I could pick, I would say take me quick. I don’t need to pack.

There’s no reward for being sick. Order me a massive heart attack.

Cancer scares me and makes me shiver, and heaven is a myth to me.

When options are gone, no more arrows in the quiver I know her again I’ll never see.

There is no happiness, there is only pain and I still can’t see them in the stars above.

Every so often, time and again, cancer takes the ones I love.

I wish I could stop my kids’ feeling of pain, their eyes puffy and red from crying.

They’ve lost their mother; there will be no refrain. I’m lost without her, but still trying.

I can only chart a love-filled path for them now, try to make them a new home.

My life is in ruins but I must build it somehow, perhaps near the sea and the foam.

Rhody is home, it could be worse. We will leave the bad memories in our Texas home.

Compared to Texas it is a pain in the purse, but better to live in a land we have known.

So hand me a tissue, allow me to cry. I struggle to move forward, stuck in my head.

She was so amazing I don’t understand why cancer took my life’s love from my bed

Aurora Verdict

Remembering the Victims

George Orwell, in Politics and the English Language, wrote that “Political language – and with variations this is true of all political parties, from Conservatives to Anarchists – is designed to make lies sound truthful and murder respectable, and to give an appearance of solidity to pure wind.” And so it is with the concept of the death penalty, for me. I realize this is a personal issue, not unlike abortion (ironic how much  the two have in common) and elicit powerful emotions on both sides of the debate.

Today, the jury in Colorado could not agree on a penalty for the shooter in the July 20, 2012, Aurora theater shooting which claimed the lives of Jonathon Blunk, age 26; AJ Boik, age 18; Jessie Childress, age 29; Gordon Cowden, age 51; Jessica Ghawi, age 24; John Larimer, age 27; Matt McQuinn, age 27; Micayla Medek, age 23; Veronica Moser-Sullivan, age 6; Alex Sullivan, age 27; Alexander Teves, age 24; and Rebecca Wingo, age 32 and injured another 70 resulting in a default penalty of life in custody without the possibility of parole. The toll might have been significantly higher had his 100 round drum magazine not jammed on his assault rifle or his boobie-trapped apartment detonated as planned.

And yet, with all of that, I still do not feel that the death penalty would have been appropriate. For one thing, it triggers an immediate and almost mandatory appeal. Many of the objections rendered by the defense during the trial were simply for the record in order to reference for the appeal process. The thought of making the families go through another trial is sickening. While time may scab over some of our horrible memories, I do not believe in “closure” and I do not believe these scabbed over wounds can ever heal. The likelihood of an appeal for a penalty of life without parole is significantly reduced.

Furthermore, there is ultimately no “relief” in a lethal injection for the families. There would have been no pain during his execution, no agony, no prehistoric carnal retribution, if that’s what you were looking for. No eye for an eye. The people in the theater suffered, those that died suffered, those that were injured suffered. Those that were uninjured were terrified. No one there will ever be the same. Ever.

In fact, we treat the worst criminals better than we treat the terminally I’ll. The shooter would be given a gentle drug to put him to sleep and then another to stop his heart. As I type this, I am sitting at my desk watching my wife suffer the end effects of breast cancer as it seeks to conquer her lungs, liver, pancreas, abdominal wall, and probably brain. She struggles for each breath and there is nothing she can do about it. Where is her dignity? Where is her justice? Where is her gentle drug cocktail?

No, I do not believe in the death penalty. I believe this jury got the penalty correct. His penalty should match that of the survivors and remaining family members who have to carry on each day without their loved ones or with life-changing injuries or with the PTSD associated with that event three years ago. They too got life without parole. Orwell was right. You cannot make murder respectable.

Lisa’s Birthday

at Versailles

at Versailles

Birthdays are often thought of negatively, an ugly reminder that Father Time is pushing you toward old age. But birthdays are not guaranteed and should, therefore, be celebrated. Old age is a result of outlasting many far worthier candidates for no worthier merit than drawing breath when others are denied the privilege. Why do I survive when Lisa will not?

Which brings me to the issue of how to celebrate Lisa’s birthday on Saturday, June 13th? It is not a reminder that Father Time is pushing her toward old age. It is this time an ugly reminder that birthdays are not guaranteed and are sometimes difficult to celebrate. Rather than presents and festivities, let me offer thanks and apologies.

Thank you, Lisa for first agreeing to go out with me when we were assistant store managers at Woolworths in North Dartmouth, Massachusetts, at a time in the 1980’s when jobs were slim and women’s shoulder pads were large.

Thank you for staying up all night with me on Thanksgiving and agreeing with me to quit Woolworths because we both knew we were better than that; creatively, intellectually, and professionally.

Thank you for saying yes to the most important and terrifying question I’ve ever asked at La Petit Auberge, in Newport, RI in 1988. It was a perfect meal, a perfect evening and you were the perfect fiancé. Oh, how I wish there was the internet back then! I would have told the world!

Thank you for walking down the aisle of the Carmelite Chapel in Newport on September 9, 1989 to become my wife, or more importantly, letting me become your husband. You planned the day perfectly, including the weather. I’ve always wanted to take a time machine back to our reception to relive it as a guest. It went too fast and I missed too much. Wow, you were beautiful!

Thank you for sticking with me those first few years. I know it wasn’t easy. I know I wasn’t easy. For that, I’m sorry and forever regret the time spent arguing when I wish now I had the time back. But we made it and it formed the diamond hard phalanx we would use to fight anyone and anything that came against us.

Thank you for giving me the two greatest gifts in the world, one a perfect combination of your creativity and your beauty and the other a combination of your passion and your adorable, hooked nose. Together, they represent the best of us and stand at the precipice of adulthood with the entire world in the palm of their hands. And they stand there because you spent every day developing their confidence and talents. The world is theirs. The world needs them. On behalf of the world, thank you.

Thank you for standing by me while I struggled. I’m sorry. I wish life had a User’s Manual. How easy life would be if we could turn to page 37 or if there was an Appendix for Troubleshooting. But there isn’t. You were always there even when I didn’t want it, always my customer support when tech support should have been called.

Thank you for enduring the barbaric attacks on your body we dare call “cancer treatment” over the past eight years, all in an effort to be here for the kids and me. Even with that noble goal, I know that had the tables been turned, I would have curled up into a little ball and gone away long ago. Women endure things that men could never conjure in their worst nightmares.

Thank you for everything. You will not pass away. You will have been murdered by treasonous cells within your own body, suicidal cells replicating out of control, killer cells.

Thank you for creating my family, for taking and creating a new branch of the Fucile family tree. You have cultivated it and left it to your children as a proud and honorable name infused with all of the sap from the McIntosh bloodline. Shakespeare wrote in King Henry IV, Part II

King:               More would I, but my lungs are wasted so

That strength of speech is utterly denied me.

How I came by the crown, O God forgive,

And grant it may with thee in true peace live.

Prince Henry:  My gracious liege,

You won it, wore it, kept it, gave it me.

Then plain and right by my possession be,

Which I with more than with a common pain

‘Gainst all the world will rightfully maintain.

And now, Woolworths is gone. La Petit Auberge is gone. The Carmelite Chapel is gone. But although your body may leave us, you will never be gone. You live in each of your children and in my heart. You live in all of the memories of every person upon whom you have made an impression. You were betrayed by your body, but you never betrayed your friends. We love you. I love you. Forever. Thank you.

Aaron’s Wishes for 2015

December 18, 2014

Hello. My name is Aaron. I am six years old. I am a second grade student in Miss Vasquez’s second grade class at John F. Kennedy Elementary School. Our class has been cutting out newspaper headlines all year and last week we had to go up to the board with each headline and put it under one of the headings we had created. When we were done, we had many headings, but only a few had lots of headlines under them. The heading with the most headlines under it was Fear. Under this heading we had headlines like Ebola, the shooting in Ferguson, the chokehold death in New York City, the police protests, the midterm elections, the open carry marches in Texas and the Bundy ranch standoff.


December 29, 2014

Fear is a paralyzing emotion and emotions are amazing things, but they cannot be the sole basis upon which decisions are made. For example, my mother’s grief often manifests itself in her binge eating, and while it may feel good enough in the moment, I’m sure you will agree that a pint of Ben and Jerry’s Phish Food does not a meal make. Nor does letting a dozen casseroles spoil in the refrigerator because she’s “not hungry” qualify as taking care of herself.

My wishes for 2015 are for fear to give way to reason, for paranoia to give way to compassion and for hatred to give way to understanding. These are my wishes because I am six years old and I will always be six years old. I will always be six years old because our neighbor gave in to fear and bought a gun and accidentally shot at his daughter when she came home late last week. Thankfully, he missed her, but there is a hole in my head where my right eye used to be and tomorrow morning Mommy will bury me.

18172

Susan Sontag, in Illness as Metaphor suggests that we refrain from anthropomorphizing cancer as tuberculosis was in the 19th century. It is simply a disease, linked neither to melancholy nor passion. However, it is increasingly difficult for the patient or caregiver to remain impartial to a disease which exhibits human characteristics such as changing tactics (mutation) and exhibiting a single-minded determination (death).

As I write this, I am fifteen days out from the death of my father from lung cancer, 15 years out from the death of my father-in-law from lung cancer, locked in a pitch battle with a second primary soft tissue sarcoma in my dog and engaged daily in a barbaric fight to the death with my wife’s breast cancer. Cancer sucks.

My father was 73. My father in law was 59. I am 49. My father knew me for roughly 67% of his life, but I knew him for 100% of mine, all 18,172 days. I have been without him now for 15 days and my world has changed. The pain he endured, the pain my mother, brother, sister and I witnessed will forever reside in our brains as white hot, searing agony. Good memories will rise to replace those created in the final few months as the thoughts that race to the forefront of our minds when we think of him, but the cruel experience of watching him die can never be erased. I smile when I think of my father-in-law now, but just as quickly recall the chaos in my mind as I realized what was happening at the end (and whether I could have/should have done something different to help). Likewise, my mind wanders to dark places when I think of the future for my wife and puppy. What will it look like? Will I be better prepared? Does it matter?

I was fortunate enough to give the eulogy at my father’s funeral. It was a rambling recollection designed to please the audience and summarize a life while ignoring the injustice of the occasion or the misery he endured. I include it here:

DNA is passed down from one generation to the next. Stirred together with our experiences and memories, we become individuals. But DNA is the foundation, the framework, upon which the individual is built.

My father had an amazing memory, a trait which was not passed into my DNA. My sister got that gene. She, like he, can tell you about the time in June of 1974 when the hibachi flamed up on the patio from too much lighter fluid. They would go on, “It was a Saturday afternoon, and it was slightly overcast and humid. I remember it was humid because the hamburger buns were sticking together. Mom was wearing red slacks with a white top, and Fisk was out for the year after tearing up his knee in Cleveland the day before.”

 It always amazed me what he could remember when we talked. Especially about baseball.  Especially about when I played baseball. What I remember about my baseball career was that I stopped growing too soon and pitchers learned how to throw a curve. But Dad could pull details from specific games, including the weather, from out of nowhere. “Do you remember that day? You probably don’t. It was HOT! We were playing a double header in Warwick. You went 1-4 in the first game and we had gone through all of our pitchers to eek out a win. We had nobody left for the second game. You doubled in your fist at bat, ripped one down the right field line off of so-and-so, who went to such-and-such college later on. You don’t remember that?” What a memory.

 Ovid said, “Dripping water hollows out stone, not through force but through persistence.” Having my father as my baseball coach, especially as my skills waned, but as his intensity increased, was a recipe for conflict at home. Trust me.  Fortunately, my brother had the strong arm of a pitcher which I did not and my father had the opportunity to teach a rising star and enjoyed his career as I transitioned to college, the workforce, marriage to an amazing woman and beginning a family. But it is the mark of a good parent and softened memories that when he recalled my baseball games in later years, he only recalled (to me) the ones in which I had performed well.

Memories and DNA combine in fantastical ways. It amazes me how a family can experience something together and one or two members can have that event stick with them forever while the rest of the family has it wash over them and out of their minds forever like a wave on the beach. I remember one time we were in Oneonta, NY. I couldn’t have been more than 12 at the time. We were accompanying Dad on a recruiting trip and sitting in a little pizza shop. Jan, what was the name of it? Mama Nina’s, right. A song came on the radio, a simple tune, just piano at the beginning and my father seemed to float away. He said, “When I die, I want this played at my funeral.” It was Colour My World by Chicago. I don’t know why I remember that, or if he even remembered saying it, but I was listening to it on my iPhone when my brother called to tell me Dad was gone.

Dad was a man of contradictions.

He lived on an island but hated bridges. In fact, funny story. My brother, mother, father and I went to Cincinnati to see a Reds game in 1990. We stayed in a hotel across the Ohio River in Kentucky. The stadium was literally right across the river. You took a foot bridge across the river directly into the stadium. We walked out of the hotel, down the street and up to the bridge. Now understand, my dad was a lifelong Reds fan who had waited 50 years and travelled 827 miles to see them play, only to find himself frozen at the base of the footbridge, unable to make the final ¼ mile walk into the stadium. Slowly, we were able to talk him into making the trek and we saw the game. Of course, I can’t remember if they won or lost, but for this occasion, I like to remember that they won.

He loved living on the coast and yet I never remember him going to the beach and he never showed any interest in boats.

He hated war and the military industrial complex and yet worked at NUSC and lived in a Navy town.

He espoused peace and yet was himself quite combative.

 He loved driving but hated cars.

 He loved baseball and hated the Red Sox, although I think what he hated was the typical Red Sox fan, who knew only of the Sox and nothing about any other team; patronage without understanding, loving a local team rather than the nation’s game.

He, like my son, Cameron, loved a debate and found the lack of one far worse than solitude, for in solitude he always had a book to read. Cicero said, “If you have a garden and a library, you have everything you need.” I think Dad would add my mother and a dog to that phrase, but you get the point.

We debated many things, even the seemingly taboo subjects of politics and religion. Without knowing he had formulated it, I heard him, I think in a veiled attempt to convince me rather than himself, rephrase Pascal’s 1660 gambit on the existence of God, which states that as the reason to believe, “If you gain, you gain all; if you lose, you lose nothing. Wager, then, without hesitation that He is.”

Of course Pascal, sounding like something my father would also say, said, “I would prefer an intelligent hell to a stupid paradise.”

He, like my daughter Samantha, loved art and found music in paintings and rainbows in music. He sought out the educated and never stopped learning, taking online courses on art and art history.

He loved words and the art of writing, finding them transcendent building blocks capable of being combined to create immense power and compelling depth. Shakespeare, in Romeo and Juliet, wrote of death:

“When he shall die, Take him and cut him out in little stars, And he will make the face of heaven so fine That all the world will be in love with night And pay no worship to the garish sun.”

Samuel Butler said, “Life is like giving a concert on the violin while learning to play the instrument.”  How often do I wish there was a manual to life and that the pitfalls of error could be written out of existence. But experiences cannot be bequeathed; we all must fail while trying in order to grow. Parents try, but children don’t tend to listen. Oscar Wilde said, “Children begin by loving their parents; as they grow older they judge them; sometimes they forgive them.” I believe we grow up when we have to, some earlier, some later; rarely does it coincide with the calendar or a birthday.

To my mother, let me say that you are stronger than you think you and far more capable. These past few months have shown me a fortitude and strength that I mistakenly thought you only exhibited in the protected shadow of Dad. Now I know that you will be alright. You have over 50 years of memories and children who love you and friends who embrace you. Remember what Langston Hughes wrote,

“To some people Love is given, To others Only Heaven.”

Helen Keller wrote, “Death is no more than passing from one room into another. But there’s a difference for me, you know. Because in that other room I shall be able to see.”  Dad is no longer in pain and only time, like Ovid’s dripping water, will soften the sharp painful edges, the memories we share of his final months. Eventually, the good times will replace the bad in our dreams and these memories will fuse with our shared DNA and we will remember that we are his and he lives on in us.

 At the cemetery chapel, a good friend read a poem my father had written in 1986 to my mother. In it, in a quite linear manner, he describes their life together. Nowhere in those verses is there a reference to pain or cancer. Life’s narrative does not include the intrusion of a malevolent entity determined to rob us of the future for which we have done everything we can to prepare. Everything we can do, but blind to the suicidal mutation bent on our destruction.

Here is his poem:

My Choice

I’m not good at tennis, but I think the game’s swell

It’s when I first met her, I remember it well

A distance away, a casual glance

My head met my toes, my heart did a dance.

 

My casual glance turned into a stare

She knew I was looking but just didn’t care

When finally we met, I looked at her eyes

Seeing rivers and oceans, and bluebirds and skies.

 

Even bluer than sky on a bright sun kissed day

No clouds cross her path, blue eyes turn them away

Only earthly tears of joy should flow from those eyes

If I’m her life partner, I’ll tell her no lies.

 

As I got to know her, I applauded my choice

As she spoke in whispers, I adored her soft voice

Her hair was quite long, with curls at the end

Please don’t break my heart, I fear it won’t mend.

We went many places, we did many things

Time spent together was time sprouting wings

I envisioned forever, and tomorrow today

Instead she just dropped me, I can’t have my way.

 

We went out with others but it wasn’t the same

Was it a test, or some sort of a game

When I see her with others, do I speak, do I care

Please give me a nod, just a sign you still care

 

Maybe fate or just luck, or whatever it’s been

We got back together, hold my breath, count to ten

Circle the calendar, a date not to forget

We’ll live life together, we’ll share what we get

 

The years started passing, to college to nursing

Precious moments together, just sweet talk, no cursing

We tied the old knot in our junior year

All brand new to us, you’ll love it, my dear

 

A child or two, maybe three with some luck

A house and a car, and some baseballs to duck

Life’s experiences we’ll share, gardens together we’ll tend

I’ll tuck in the doggie with her dearest friend

 

But most of all for this selfish old me

Her companionship, warmth, and of course, a hot tea.

She bore three children, mostly gentle like her

She much prefers them to diamonds and fur.

 

She nursed and bathed them, showed comfort and passion

All treated the same, her love she won’t ration

With mental alertness, fine health they enjoyed

Their values time honored, with no moral void

 

Years slipped away, they end with a song

Children still with us, but won’t be for long

Adults they’ve become, to us they’re the best

They’ll find their own forest to build their own nest.

 

Alone we will be, but two as in one

Let’s visit the children and watch their kids run

Would we do it again, in a minute, no warning

Let’s repeat it again, let’s start in the morning.

 

Dare I guess at our future, can you put time on fade

Will we grow old together, is it too soon too late

Are hours elapsing, do minutes have minds

Can we set back the sunsets, must they always unwind

 

Philosophers ask where does time really go

Not sure of the answer, I don’t really know

If the answer’s discovered, please allot me some more

To spend more of it with the girl I adore

 

The end may come sooner than you or I know

It’s not fair I’ll answer, my joy turns to woe

But how few you have known been as lucky as us

To have been at the station, have caught the right bus

 

Eternity closer, I’ll meet her there too

I’ll bypass the clouds, I’ll follow the blue

We’ll thank the dear Lord for our beautiful marriage

And roll through the Gates in Heaven’s best carriage

 

Thanks for making us mates in our earthly endeavors

We juggled the balls, we pulled all life’s levers

The poem is ended, I’ll feed you no malarkey

Thanks for the short time with Ellen Frances Sharkey

 – March 13, 1986

Forgive me this downbeat missive. We will rally again, circle the wagons, do what we have to do, but time is finite and pain seemingly eternal.

Inhuman

PainPublilius Syrus in the first century B.C. wrote “when Fortune flatters, she does it to betray.” Plutarch reinterpreted this as “I see the cure is not worth the pain.” Somewhere over the past two thousand plus years we have lost the connection between humanity and the humane.

Setting religion aside and ignoring the politics and ethics of Dr. Kevorkian, it is, none the less, barbaric how we treat our loved ones at the end of their lives.

We have somehow bridged the moral abyss with compassion for our beloved pets by “humanely” putting our beloved pets out of their senseless misery, ending their meaningless pain, answering their pleading eyes with the selfless, heartrending compassion of euthanasia.

We have somehow sanitized capital punishment of the worst criminals from fatal and barbaric corporal punishment to a “humane” (although still debatably barbaric) dream-like sleep out of existence.

And yet, we allow our loved ones to face “natural” death filled with a fear, pain and confusion making anything that happened at Abu Ghraib look like Walt Disney World.

This suffering is multifaceted. Of course, there is the physical pain, which is no better controlled today than it was 50 years ago. The opioids still rule as the best we have to offer. The problem is that they are systemic, meaning that they travel throughout the entire body. If the pain is in the hip, the hip gets the morphine, but so, too, do the little finger, the ear lobe and the brain. The result is that the little finger and ear lobe are no better or worse, the hip suffers an incomplete relief of pain and the brain suffers the confusion, paranoia, nausea and narcolepsy unnecessary to treatment. This is the best medicine has to offer in 2014? The other suffering it brings is to the family members who must endure watching the physical suffering of those they love hampered by the incomplete relief of pain. Meaningless suffering is the worst kind. Love of another means the willingness to shoulder their burden. The helplessness felt by the family member watching their loved one jerk in pain or crying out as they try to move them or comfort them is an indelible stain on their soul.

The suicidal mission of cancer adds to the frustration. Bent on destroying its host, even at its own annihilation, cancer never rests. To paraphrase Siddhartha Mukherjee from his book The Emperor of All Maladies, cancer cuts the brake lines of some cells and jams the gas pedals of others, stopping the natural cell regulation process and sending the cancer cells into a proliferating frenzy steamrolling every other cell in its path. In his or her clearer moments, so too, the cancer patient undergoes a civil war; one side, engrained in all of us, pulls us to live, to continue fighting, while another force, armed with logic, understanding and ultimately love, forces the patient to begin facing the inevitable truth with no regrets and peace.

In his book Man’s Search for Meaning, concentration camp survivor and psychologist Victor Frankl describes inmates of the camps as surviving long stretches if they could find meaning in their suffering.  Some held on to the hope of outlasting the Nazis and returning to their loved ones (should any of them have survived), others found peace looking up at the sky and imagining conversations with their loved ones wherever they might then have been. Life was worth living if they held a kernel of meaning in their suffering.

I have searched and considered and yet find no meaning in the suffering loved ones endure at the end of their lives given the current state of medicine. Pain is pain and on a scale of 1 to 10, anything above a 1 means the medical field has failed. The root word of both humane and humanity is human, from the Latin humanus. However, we reserve those words for our treatment of pets and prisoners, not our loved ones. For them, and for ourselves, it is inhuman what we put them through, for them and for us it is nothing short of torture.

Guardian Angel

 

How better to share my grief about the loss of a friend than through a story? After all, isn’t that, ultimately, how we remember those we love who leave us?

Blaine Toshner died this week. He was many things to many people, but he was above all a kind and gentle soul to everyone who had the pleasure of having had encountered him. He sought to brighten everyone’s day with a terrible pun or awful joke, always leaving us with a smile on our face as we left him to face the challenges before us; his simple but always effective gift to each of us. Let me back up.

In 2008, my wife was diagnosed with a very aggressive form of breast cancer, a type with which the doctors in Rhode Island knew little about and even less about how to treat it. Over the course of about six harrowing weeks of tests and pain followed by a string of never ending bad news and poor prognoses, we decided to pick up stakes and move to Houston to seek treatment at the M.D. Anderson Cancer Center. Our children, twins, a boy and a girl, were scheduled to begin their freshman year in high school in September. We moved in August, full of doubt and fear. The kids were brave and adjusted well to moving from a school with 800 students in it to one with almost 4,000, from a home they had known since childhood to a rental in Texas and from all of their childhood friends to a town where it was us against the world and an insidious intruder bent on killing their mother.

Lisa and I made a point of attending the open house at school in order to meet with all of the kids’ teachers, specifically to point out the circumstances of our situation and ask that the teachers contact us if they saw the kids’ slipping in school or becoming distracted by events at home. One teacher stood out as having already made an effort to get to know the kids. He was a young English teacher named Blaine Toshner. Everyone seemed to call him Coach. Apparently he was involved with the football team. Apparently, football was a big thing at the high school. I had forgotten that we were in Texas and that some stereotypes are based on fact. We soon learned that he was, in fact, one of the coaches on the high school team. There seemed to be about a dozen coaches on the team, and about a thousand players. Every time we saw him at a game, he would make a point of coming up to us to ask how Lisa was, tell us a terrible joke and gush about how good the kids were.

Blaine was a guardian angel for the kids that year. He was always there for them, never intruding, but always available, always watchful, always concerned, always in touch.

My wife suffered terribly that year. She underwent all manner of treatments:  neoadjuvant chemotherapy, a double mastectomy and radiation. At the end of the school year she was done. She rang the bell at the hospital signifying her completion of treatment, was cleared and we packed our belongings and drove the 2,000 miles back to Rhode Island, glad to leave the nightmare of cancer in Texas, but sad to leave our guardian angel and newfound friends.

The kids’ sophomore year was spent back home in Rhode Island trying to reestablish a “normal” life but under the ever present threat of a recurrence. We lived in three month chunks of time bookmarked by Lisa’s follow-up visits to M.D. Anderson. It was in the spring that we all decided to travel to Houston together for her follow-up that we got word that the cancer had returned in her lungs. We flew home, devastated and depressed, gathered our thoughts and determined that we could no longer be that far away from the hospital. We decided to sell our home in Rhode Island and move to Texas. The emergency department at M.D. Anderson would be 45 minutes away rather than 2,000 miles away. If the cancer was going to be that aggressive, we were going to meet its aggression with overwhelming ferocity.

The kids finished up their sophomore year early, thanks to the kindness of the teachers and administration at home. We flew to Texas and quickly found a small house to buy. We put our home in Rhode Island on the market and I flew home, and with the Herculean effort of many friends, held a mammoth yard sale, selling and giving away so many treasures of our lives that I’m forever grateful that Lisa was not there.

The kids began their junior year of high school back at the same school as their freshman year and once again, Blaine was there, no longer their teacher, but always there as their friend and guardian angel. We saw him less frequently because of this, but stayed in touch. We heard stories of him helping other students and marveled at his boundless compassion. When it came time for the kids to begin the college application process, they looked to one person for referral letters. Blaine wrote them both glowing, personalized letters. Ultimately, both kids chose to attend the University of Texas at Austin, mostly, no doubt because of the proximity to their mother.

In 2010, Blaine’s sister’s and mother visited Texas and he invited us all to lunch. It was a raucous time filled with stories, laughs and new memories I will never, ever forget! I remember that afternoon as a day of muscle pain in my stomach from laughing so hard.

T2

By this time, Blaine had decided to move back to Wisconsin to take care of his wonderful mother. We chatted on Facebook and he said he looked to me as a role model as having been someone who risked everything to care for someone he loved. I had never thought of our decision to move to Texas as a sacrifice. It was just something we did. Lisa and I have always been ones to circle the wagons when a crisis threatens. We always say we’re going to have the phrase “we do what we have to do” tattooed on our foreheads. Given Blaine’s compassion and boundless energy at reaching out to make sure my children were healthy, the thought of him looking up to me hit me hard. I remember crying when I read his text. He wrote, “I think we find people throughout life who, whether they know it or not, help us make the decisions we know are right but not easy.” How much I think of that now.

My last contact with Blaine was this past June. Lisa was turning 50 and as we were away from home and most of our friends, I wanted to put together a slide show of our friends and family holding up a sign wishing her a happy birthday. I sent a message to Blaine asking him for a picture. True to form, he sent a picture, but not of himself. It was a picture of his mother and Jamo punctuated with a joke about him being addicted to the Hokey Pokey but taking charge and turning himself around.

I’ll miss Blaine, but I can never forget him. He was a guardian angel for my children when they needed him most. For that I am forever grateful. People do come into our lives at certain points and they leave their marks, their fingerprints on our souls. If the trajectory of my life is altered, even ever so slightly; if I am more compassionate today than I was yesterday and more tomorrow than today, it’s because Blaine Toshner was a part of my life and will continue to be my guardian angel.

Supernova

Keplers_supernovaPhysics has a concept called the law of conservation of energy, which states that the total amount of energy in a closed system is neither gained nor lost over time, but rather is only transformed from one state to another.

Perhaps this concept is the best way for us to understand and process the news of Robin Williams’ suicide. Consider the sadness, anger, shock and unease we feel to be the explosive energies released from inside the tormented Williams himself, the magnitude of our impact directly proportional to our relationship to the man- immediate family members impacted most severely, friends and extended family members next, neighbors and colleagues next, extending outward to fans and then to those to whom he was known by name only.

Consider, too, how this has impacted you. Are you more sad than angry; more angry than shocked? These are the wavelengths of emotion radiating from the supernova that are Mr. Williams’ inner demons. Bottle all of the sadness we, collectively, feel and that is what he felt. That is mental illness. Compress all of the anger we feel toward him for doing this. That is how angry he was at himself for his perceived failings. That is mental illness. Mental illness is a disease that eats away at the individual as surely as an aphid on a rose bud, but from the inside. The pain is invisible and unforgiving. It is self-perpetuating, feeding on its “success.” When people are at their worst they want help the least and will either hide their pain the best (or not at all).

Remember, the law of conservation of energy states no amount of energy is gained or lost. If he is gone, that anger and sadness is still here and we feel it, not nearly as much as those closest to him, but we feel it. But, if no energy is lost, than so too, must the joy he shared be here. And so, today, go make a goofy face in front of the most important person in the world until they smile, the person in the mirror.

James Brady

spotlight-image-1James Brady died today.

For those too young to remember, Mr. Brady was President Reagan’s White House Press Secretary.

On Monday, March 30, 1981, only 69 days into his presidency, a disturbed young man fired a $12.95 revolver six times in 1.7 seconds. One of his “Devastator”-brand bullets, designed to explode on impact struck Mr. Brady above the left eye and detonated inside his skull.  Another round struck the president under his armpit. Fortunately, the president recovered, but Mr. Brady suffered a horrible head wound and was left partially paralyzed and bound to his wheelchair for the rest of his life.  Mr. Brady died today. Not every gun violence victim dies at the scene and the story never ends when the smoke clears.

In 1985, Sarah Brady joined the gun control movement, rising to chair The Center to Prevent Handgun Violence in 1991. However, it was not her husband’s shooting that got Mrs. Brady involved. To quote her:

 “Most people think I got seriously involved in the gun violence issue when Jim was shot. But it was actually another incident that started my active participation with gun violence prevention efforts.

It was back in the summer of 1985. Our family was visiting Jim’s hometown, Centralia, Illinois. At that time, our son Scott was just six years old. We had some friends who owned a construction company and they had a lovely home at the edge of town that had a swimming pool.

One day, our friend and an employee stopped by in a company pickup truck and asked if Scott and I would like to go out to the house for a swim. We thought that was a great idea. Scott got in first, and I climbed in behind him. He picked up off the seat what looked like a toy gun, and started waving it around, and I thought this was a perfect chance to talk to him about safety. So I took the little gun from him, intending to say he must never point even a toy gun at anyone.

As soon as I got it into my hand, I realized it was no toy. It was a fully-loaded Saturday-night special, very much like the one that had shot Jim. I cannot even begin to describe the rage that went through me. To think that my precious little boy had come so close to tragedy.

From that day on, I decided that much more needed to be done to help keep children safe from guns. And since that time, I have fought against the gun lobby and anyone else who wants guns “anywhere, at any time for any one.”

Forty-three different men have risen to become president of the United States. Four of them have been shot to death.  Two more have been wounded by gunfire and five more were shot at, but the assassin missed. That’s eleven out of 43. As president, you have a better than 25% chance of being shot at, shot and wounded or shot and killed. And this is a person protected by the best trained, best equipped individuals in the world.

Gun violence takes a crushing toll on surviving victims, family members (turned caregivers), friends, lost opportunities, lifelong pain, PTSD, massive medical bills and countless dreams left shattered on countless days of life’s calendar.

Mr. and Mrs. Brady did not ask for this route, but they cut a path through a dangerous, well defended forest and paved the way for the rest of us to forge a better tomorrow where dreams do not explode with a bullet’s impact. Mr. Brady died today, but their work continues.