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Today I had the opportunity to offer testimony in support of Massachusetts House Bill 2381, an act relative to End of Life Options. Physician assisted suicide is a loaded topic. For some, it comes into conflict with religious or political beliefs. For me, it comes down to personal choice that respects the rights of an individual to know their path to peace. Here’s what I had to say about it:

In 2014 my husband, Arthur Shirk, was diagnosed with Idiopathic Pulmonary Fibrosis or IPF.  IPF is a progressive, incurable disease in which the lungs fill with scar tissue and eventually become unable to transfer oxygen to the bloodstream.  It is akin to a prolonged suffocation.

Art was a brilliant, courageous, and enthusiastic man.  His life’s work was helping people reach their full potential.  He travelled the world facilitating leadership development and personal growth programs.  He held three master’s degrees and a doctorate not because he cared about degrees but because he had endless curiosity about the world and the people in it.  He had been a professional skater and a state diving champion.  After being diagnosed with heart disease years earlier, he took up mini triathlons and hiked the Inca trail in Peru.  He took up the trapeze at age 50. He was relentless and grateful for every moment of his life.  He lived it all without fear until the day of his diagnosis.

After his IPF diagnosis, Art feared a prolonged, painful and degrading death.  He wanted to be able to live his remaining days fully and freely but couldn’t do so until he knew he had a way to end his suffering if it all became too much.  In the absence of physician assisted suicide, Art had to find other means and combed over articles about ways to end his life without pain.  Art had friends gather helium tanks so he could create a helium tent that would stop his breathing.   He also acquired drugs from Mexico that would slowly stop his heart. 

Art spent his limited days planning a way out.  He did all this alone, fearful that I could potentially be held criminally responsible for helping end his life if I was involved in any way.  As if it isn’t tragic enough to have to plan one’s own death, he did it behind closed doors alone  – another consequence of the absence of physician assisted suicide. 

In November 2016, we had our one and only fight during his illness.  Art felt that he would soon need to end his suffering but couldn’t tell me where or when due to his continued effort to protect me legally.  Despite our abiding love for another, the law was driving us apart at the most tender and vulnerable time in our life. 

Imagine the person you love most telling you that you may come home soon to find them dead at their desk or in your bed.  Imagine your husband, wife, child or parent dying this way.  Imagine your beloved alone at the time of their death only because the law made that necessary.  No law and no culture that values human dignity should create such inhumane circumstances.

In the end, IPF claimed his life before Art implemented either of his plans.  Art and I had no choice but to accept his death, as we all must eventually do.  However, we do not need to accept an undignified death or an end of life that lacks compassion.  Dignity is a human right that supersedes religious, social or political beliefs.  We cannot have lives with dignity without death with dignity. 

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Everyone should have an Uncle Joe. You know – the kind of Uncle who knows the cool gifts for Christmas and birthdays. He knows, not just because he follows the latest trends, but because he knows YOU. In his quiet, thoughtful ways, he was always watching and listening to you. His eyes lit up when he saw you and he wanted to know how you were – how you REALLY were, not just the cursory, polite “fine!”

My earliest memories of Uncle Joe were as a child when he was married to his wife Aunty Connie. They lived about a half mile away from us.  When my family moved from Somerville to Reading, people said we “moved out to the sticks!”  When Uncle Joe and Aunty Connie joined us, we were no longer wild pioneers.  We could visit often.  Aunty Connie was energetic, vibrant, fun and loving.  I was mesmerized when she would peel apples in one continuous slice, creating a pair of eyeglass-shaped peels.  She had a garden full of hostas and would join us in popping every purple bud on her plants joyfully every spring, cheering us on as we romped through her garden.  She taught me that decadent whoopie pies could be made at home – a dangerous and indulgent lesson I’ve clung to ever since.  

I was probably not much more than six years old when Uncle Joe showed up at our house for dinner on a Saturday night alone.  It’s funny what you remember – your place at the table, the steak I always hated and tried to disguise by chopping into smithereens, the mashed potatoes and dinner rolls.  I don’t know if we were told directly or just surmised that Aunty Connie was gone.  She had been a beloved family member and eventually it became apparent that she and Uncle had split for reasons that were to remain unknown to the children.  

My parents worried about Uncle Joe in the years that followed.  They worried that he did not have an established career, lacked financial security and wasn’t rooted firmly in his own life.  As I grew up, when my parents were trying to impart financial responsibility to me, they’d often say “we just don’t want you to wind up like your Uncle.”  It was, by no means, a criticism of him.  Eventually I came to understand what they were afraid of.

Like all parents, my parents’ highest calling was to raise to happy, stable, responsible, children with a high moral code.  They didn’t want us to struggle.  They didn’t want us to be alone.  They were not necessarily homophobic but they were understandably unable to create a vision for what the life of a happy, stable gay man could look like for Uncle Joe or for me.  How could they?  At that time, I couldn’t imagine it either and on some instinctual level I understood and related to their fears.  I knew that I was, somehow, like Uncle Joe.  They were not critical of him – the loved and respected him deeply but there was an unknown part they could not understand.

Uncle Joe’s official “coming out” didn’t really happen until he turned 70 and all the relatives gathered for a birthday party at Aunty Sara’s house – where all gatherings took place. Uncle Joe had been diagnosed with lung cancer and we were squeezing in every opportunity to honor him.  When I walked into the party, in the corner were a group of gay men gathered around the table with him.  They were his people.  It filled me with joy and melancholy.  It was that day that we met Paul, Uncle’s long-time companion. Though not a couple, they were family in every sense of the word.  They travelled together, shared a home, supported one another in their day-to-day trials and tribulations and, mostly, they loved one another.  

Uncle Joe lived for five more years and, during that time, we had the chance to share our experiences of being gay in our family, across two generations.  Paul joined us for holidays and after Uncle died, I visited him to fill in more of the details I hadn’t known.  Before Uncle died, he gave me a ring that had belonged to my grandfather. My grandfather brought the ring with him when he came to the United States from Italy.  He gave it to my Uncle who then gave it to me.  In turn, the ring became Art’s wedding band when we got married.

The ring holds many stories of multiple generations finding their place in our family and in the world. It holds the story of my immigrant grandfather and his quest for a new and better life for his family.  It holds the story of my Uncle and his journey of self-discovery at a time when being gay was often shameful and unspoken.  And it holds the story of my marriage to Art – a symbol of our infinite love, fully spoken, recognized and honored.  I wear the ring now and it holds the story of my grief.  

Today, on Art’s birthday during the month of Pride, I’m struck by the journey of this simple ring and what it has witnessed.  The grief of my grandparents leaving their homeland, the search for love and hope, the fulfillment of love and the grief of loss.  I’m struck by the fact none of us can imagine the ways that our own journeys open up the world for those who come after us, in the same ways neither my grandfather, uncle or even Aunty Connie could.  

Neither Art nor I ever imagined we’d find a partner.  Even more so, the thought that we could marry did not even enter our consciousness until the public debate on gay marriage exploded.  Today I celebrate our marriage and this man who was unrelenting in his pursuit of freedom and love.  I celebrate having a second chance at love and I pray that the journey we are all on today continues to move all of us in the direction of inclusion and freedom. The quest for equality and freedom is never over but I am grateful for these milestones in my own journey that point us in the right direction.

Happy birthday Art. Happy Pride wherever you are.  

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Art and I loved each other very much but we didn’t really love one another’s choice of clothes.  It happens.  We tried, in not so subtle ways, to influence one another.  He bought me shirts with wild, brightly colored floral patterns that I never wore.   I bought him starched, crisp shirts that he never wore.  During one of his business trips I even threw out one of his tie-dyed t-shirts that used to make me dizzy.  One day when he was searching high and low for it, I finally admitted “what if it sort of accidentally got thrown out?”  It didn’t go well.  

Despite our disagreements about who was taller, had more hair and weighed less, the truth was that we were the same on all three dimensions.  This meant that when he died, my wardrobe instantly doubled.  It left me, though, with lots of clothes I couldn’t imagine wearing but also couldn’t imagine getting rid of, leaving big empty gaps in our closets.  

One day while getting ready for work, I impulsively looked through his shirts and found one that was somewhat suited to my taste while pushing the envelope ever-so-slightly.   When I arrived at work, I was barely through the door when someone told me how much they loved my shirt.  By the time I made it to my office I had already received three compliments!  It was sweet and satisfying keeping my little secret that this was my deceased husband’s shirt and wearing it felt like I was wrapped in his arms.  It made me smile and gave me a little chuckle knowing that Art was probably feeling a sense of fashion righteousness.  

A few days later I tried it again and got the same reaction.  A week later I found a third shirt and put it on more as a research project than a connection to Art.  My research question was answered when an employee came into my office, closed the door and sat down opposite me.  “I just have to say, you’ve really been stepping it up with your wardrobe!” Wait!  I thought I had the better taste in clothes?  Were my clothes actually boring all these years?  Did I need to push the envelope further? Should I have kept the tie-dye?  

The thing about grief is that it is never done.  My experience with Art’s shirts brought me back to a couple of key questions about grief: how do I integrate it?  What do I learn and create from it?  Who do I become now and what does life look like on the other side?

In some small way, my shirt experiment was another way of experimenting with my grief – to figure out if this was another way to connect with Art…would wearing his clothes be a way to honor and remember him that would be satisfying?  Could I keep a piece of him alive in this way or was it meaningless and maybe even creepy?  What parts of him, his life and our life together will I bring forward and what parts need to be packed up and given to Goodwill.  

On Art’s anniversary last year, a good friend told me that he felt that I was still hanging onto Art and in a lot of pain because of it.  The words hit me like a ton of bricks.  I knew he was right.  As I looked around the house I noticed how much it looked the house Art and I shared, despite it being an entirely different place.  I noticed how much of Art was there.  Of course, there’s no magic way to be with the changing stages of grief but I knew it was time to find a new way.  I wrote a letter to Art releasing him to the Universe.  With every ounce of my being I wished him well…wished him peace and freedom – the things he sought most in life.  I packed up photographs, momentos and household items that were uniquely Art and decided to try to make room for what was next.  I gave away some stuff, ordered some new furniture and mostly gave myself more permission to indulge my own desires and find my own style and expression.

I’m not sure that anything looks terribly different which isn’t really the point anyway.  It has felt different though.  It doesn’t feel as if I’ve pushed Art away but rather left my heart open to experience something new without him.  

The past year has been beyond any of our wild imaginations.  I’ve often found myself reflecting on the year from the perspective of grief.  With COVID, we have grieved multiple losses – the deaths of nearly 400,000 Americans, financial and emotional losses, the loss of social contact and support, and the fear that can come with all that loss.  It has also been a year in which many of us have grieved for our country and the world – for the things we believed were true, for the spotlight on vicious and systemic racism, for the political divisiveness that has driven deep wedges into long-standing relationships.  

It brings me back to Art’s shirts.  At a time when it can feel like everything has crumbled around us, what remains to bring forward with us?  Can we let go and stand in that empty space, letting go of the order that was there to welcome what can be created now?  Can I be with the sadness and mystery of these days, and stay open-hearted to create a new space that I – and we – can thrive in?  Rather than growing increasingly impatient with the current state of affairs, can I listen to the silence with as much attention as I listen to the barrage of news coming at me?  Most importantly can I bring the colors of Art, the joy of what we shared, the open-heartedness he fostered and step into the unknown, tethered to the values I hold dear but also welcoming the mystery that lay ahead.  It seems to me that the tragedy of grief is not only what we have lost, but our inability to carry the best forward and make room for what can become of the loss, even the loss of hope.  

Four years have gone by in the blink of an eye and yet feel like a lifetime.  Many days I’d do almost anything to go back.  As I write this I’m listening to the song “Defying Gravity” from Art’s playlist…”Too late for second guessing.  Too late to go back to sleep.  It’s time to trust my instincts, close my eyes and leap.”  

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“So what made you move here?”  It’s a typical, benign question that any neighbor might ask of a newcomer like me. I moved to my new home in a different neighborhood of Boston late May and when I was first asked that question, I was rendered speechless.  “Well we used to own a house…” but I could see the perplexed look on their face. Was I referring to me and the dog on the end of my leash?  For a while when the “we” pronoun slipped out of my mouth, I’d qualify it by explaining that I was married.  To a man. No I wasn’t divorced.  He died a while ago.  Ugh.  I could feel that this was already TMI but I couldn’t seem to stop myself.  The horse was out of the gate.   I was off and running, providing a convoluted response to a simple question.

I quickly found myself dreading walking Mario through the neighborhood alone, fearful of my verbal diarrhea.  Then it dawned on me.  I’m coming out again.  This time it’s not about coming out as gay as much as it’s about coming out as a widower. And it’s every bit as painful as the first round.  As I walk Mario, I’m aware that I am now seen as the new single guy with the dog that just moved in up the street.  My new neighbors never knew Art and never will.  They do not know that I was once madly in love and madly loved by an amazing man.

So begins another stage of grief and transformation, shedding my old skin and stepping into who I’m becoming.  I’ve learned now to avoid the use of “we.”  It exists in my heart but not in my day to day reality.  I’ve set up my new home alone.  It reflects only my taste and choices.  I’ve struggled to decide how many pictures of Art should be out.  When does it start to strike people as creepy?  How much is comforting and how much saddens me?

Art and I kept a small, old chalkboard in our kitchen where we used to draw pictures and write welcome messages to our guests and love notes to each other.  About two weeks before he died he wrote “You are my Hero!” on it.  I never erased that message.  It comforted me to see it each day but somehow while my new place was being painted, the message got erased.  I feel things slipping away.

I know that these external realities do not change what remains inside of me.  I love Art every bit as much today as I did on January 10, 2017. I miss him horribly.  And while some of my old identity and reality is shifting, it’s making room for something else to emerge.

First I have to accept that I cannot go back.  Just yesterday I had to gather some old financial documents and information about Art. It forced me to dig through notes he left for me and piles of papers from when he was alive.  I began to shake, feeling on the verge of sheer panic.  I slammed the drawer shut and fell into heaving sobs.  Twenty months later and the tsunami of grief is as powerful as ever, though perhaps shorter lived.  No.  I can’t go back, so now I come out again, stepping into the new truth.

There’s always some relief in coming out or speaking our truth to the world.  The heaviness of our secret is lightened.  The chains around our ankles are released and we move more freely.  Yet there is also sadness to it.  Here’s the thing about my current truth that is most awkward to say — I’ve begun dating again.  There. I said it.  Now you know.  I haven’t wanted to tell you or anyone.  The main reason is that I do not want the world to stop seeing me as Art’s husband. I forever want to be “Art and John.” The experience of being married to Art deeply changed me.  That will always be true.  I haven’t yet figured out how to hang on to this part of my identity while letting myself fall in love again.  My heart is so full of Art that I struggle to make room for another.  I don’t want to be seen with anyone else.

One night I met someone at a community event and as we both left he asked me if I wanted to stop for a drink.  Without thinking I said yes and a few minutes later found myself sitting on a barstool next to him.  Slowly it started to dawn on me that I was on a sort of date!  Just then an old friend walked in with her husband.  I wanted to duck under the bar and hide.  Did it look like I was on a date?  What if they come over?  How do I introduce him?  I barely know his name!  What if he isn’t very sociable and acts like a jerk?  I felt like I was cheating on Art.

It has been months since that first date.  I no longer have that same panic.  I do still have the sadness though.  Even after a nice night out I have sadness about needing to date again.  I was never a big fan of the cruel ritual in the first place!  I want to tell Art about the people I meet.  I want to introduce people to him and vice versa.

Sometimes people say to me, “You’ve done so much since Art died!  You’re doing great!”  I appreciate the encouragement yet I fear that dating will be interpreted as my having “moved on.”  I fear that people will talk about him less, as if that part of my life has been closed off. Then I worry that men I date will be uncomfortable hearing about Art.  This is how it is with coming out.  At some point the pain of staying stuck is greater than our fear.

The reason many people don’t come out is due to fear.  I realize that the antidote to fear is becoming more open-hearted and loving. It means pushing myself beyond my old boundaries inch by inch, opening my heart more and more.  It’s not about love in the mushy, gushy sense of the word. For me it’s about more open heartedness in the places that sometimes challenge me.  It’s about being more welcoming, empathic and compassionate with people where…let’s just say…it doesn’t come naturally!  I have to look honestly at myself and see where I am closed-hearted with family, friends, coworkers, neighbors and my community.

One of the earlier lessons of grief has reappeared:  I have to learn how to hold two opposing truths at the same time.  How can I be heartbroken with grief and yet love with reckless abandon?  How can I maintain my identity as Art’s husband while also moving through the world as a single person or in another romantic relationship? The answer always remains the same – open my heart more and more.  I cannot replace the piece of my heart that loves Art with a part that loves someone new.  Some of Art’s final words come to mind – “may your grief transform you and may your heart open more and more…”  I discover that I do not have to choose between Art or a new relationship. If I can be more expansive in my ability to love more, I don’t have to choose.  It has become possible to embrace grief and welcome the exhilaration of new love. I can (and do!) fear navigating all the details of life alone, often overwhelmed and anxiety-stricken having to balance so many priorities.  Yet at the same time I can jump in with both feet to the great unknown if my heart can make more room.

I’m not proud that I don’t have to look far to find people and places where my heart is not fully open. There’s poor Alba at the bank, for example.  She is the unsuspecting staff member assigned to help me sort out Art’s accounts.  She regularly had me jump through bureaucratic hoops too many to mention.  I held her in contempt for months, speaking to her in either flat, angry tones or in shaky screams.  She did her best in an impossible system.  I think it’ll take a long time before I can love Alba, but it took no time to stop in her office during my last visit to the bank to say hello and wish her a nice weekend.  She looked at me with great suspicion, as if I might pull out a gun any second.  It was a step in the right direction that shifted my own perspective and mood.  An ounce of compassion left me more open hearted.

For me it’s about releasing myself from the places where I’ve been stuck.  It’s pushing the envelope in the direction of openness, especially when my first instinct is to be defensive, angry or dismissive.  And so with openheartedness, awareness and gratitude I step out into the world as the person I am today – a widower with his dog, a man still longing for love, a person trying and often failing to embrace more of the world around me, little by little.

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“This call may be monitored for quality assurance purposes.”

Until a few months ago, that line used to warm my skeptical heart just a little whenever I’d call a customer service center. I somehow imagined a benevolent older person listening to my calls, quietly gasping every time they’d hear my frustration with the customer service rep. Maybe they were seated in a glass booth above the call center flailing their arms every time I was placed on hold for too long or when I was asked to verify my birthday, mother’s maiden name and the name of my first pet for the 479^th time. I thought they might be waiting in the wings, ready to jump in and rescue me when I could no longer listen to all the “press 1 if…” options and frantically kept pounding “00000!!!!!!!!!”

In the last nine months, I’ve spent most of my waking hours on the phone with banks, utility companies, and various vendors with whom Art did business. I’ve had to transfer accounts into my name, close accounts, open new accounts, update billing information, change passwords, merge accounts, subscribe to new distribution lists, unsubscribe from a billion other distribution lists, and fill out more than 225 pages of forms (yes, I’ve actually counted!).

I have generally thought of myself as a reasonable, empathic person who understands that most customer service representatives are powerless to change the torturous, convoluted processes they administer. One summer during college I made a feeble attempt at telephone sales. Though I was the child of a salesman, there is apparently no genetic predisposition to sales. I would sometimes call places where I knew no one would answer and pretend to be talking to a potential customer, on the verge of closing the deal. At lunch we had to dance the hully gully to inspirational music like “Aint No Stoppin’ Us Now” or “We Are Family.” Really. After three days of talking to busy signals, unanswered phones and hully-gullied out, my sales career came to a screeching halt and I returned to scooping ice cream. From then on, I had compassion for people chained to their desk by a headset. Maybe they had to do the chicken dance every day.

I learned early on that among the many benefits of same sex marriage, one rises to the top: the ability to pretend to be your spouse. We were, after all, the same sex, height, weight, had the same hair line. We even got our master’s degree from the same school on the same day. We were practically the same person, I figure. The first time it happened was when I called to cancel one of Art’s credit cards. When I told them that my husband had died and I needed to cancel his card, I was told that I’d have to request a specific form then return it to them with a certified death certificate and proof of my legal authority to act on Art’s behalf. My heart sank when I realized that was the first of hundreds of businesses that would require this. After hanging up I thought there had to be an easier way. I called back, said I was Arthur Shirk and wanted to cancel my credit card. After verifying his birthdate and social security number the job was done.   No form. No death certificate. No insincere “Please accept my sincere condolences.” They even told me that if I logged on to their system today, I could cash in all my bonus points for a prize. I decided to forego the prize to assuage my guilt over impersonating Art.

I adopted this strategy quite regularly until one day when I was told they just needed me to verify the answers to my security questions. Gulp. As well as I knew Art, I didn’t know what hospital he was born in or his high school mascot. Whenever a customer service rep told me they were about to ask me the security questions, I’d panic. In that split-second I had to decide whether to come clean and confess my fraudulent ways or go for broke. I gambled every time and was always successful…well except once. One day in the midst of my best Art impersonation, a credit card company asked “What school did you attend in first grade?” I paused for a second and remembered driving past the school during one of our visits to his hometown in PA. I closed my eyes and tried, to no avail, to picture the sign in front of the school but drew a blank. I had no choice but to do what any self-respecting, fraudulent person would do: I hung up abruptly.  My Catholic school guilt kicked in and I wondered if they now blacklisted my phone number and an alarm would go off every time I tried to call them again.

Feeling as if I’ve become a bit of an expert in the customer service realm, I can unequivocally say that the most complicated, least efficient businesses are banks. It’s kind of like dog years. For every minute you are on hold at Comcast, you are on hold for seven minutes at Bank of America. For every form you are required to submit to Verizon, you have to submit seven times more paperwork to the bank. It is like being a contestant on the Amazing Race. They dole out their instructions in short, incomplete segments never indicating how many more clues or steps it will take to reach your final destination. I was first told to “simply” bring in Art’s certified death certificate along with proof of my legal authority to act on his behalf. I smugly produced the documents immediately, foolishly thinking my work here was done. Five months and 75 pages of forms later, I started to think that maybe Art was the first Bank of American customer to ever die! Perhaps a Bank of America account was, in fact, the key to a long life! They certainly could not be this inefficient if they had ever work with a widower before.

In my banking despair I was assigned an Estate Unit Case Manager. In my social service career I have managed many case management programs for people with various sorts of challenges. The case managers with whom I’ve worked have helped people find housing, health insurance, health care, jobs, financial assistance, legal help, furniture and clothing. They’ve reminded their clients to go to appointments, have helped them fill out forms and have found the answer to seemingly every question. My case manager colleagues often joke that they would like a case manager themselves – someone to basically resolve most of life’s day-to-day challenges. My time had finally come and I imagined my compassionate case manager sitting under soft lights behind stacks of paper, relentless in their pursuit of my banking happiness. I was comforted knowing that some compassionate soul was probably lying in bed sleepless at night, eager to resolve Art’s accounts and let me go about my life in the same way my case management colleagues did with our clients. Not so much.

For the first two months after Art’s death, I would log onto his various accounts using his username and password. It was easy and it allowed me to gradually transfer any of his expenses to my accounts and identify other accounts needing to be transferred to me. But once you come clean and tell the bank that the person has died, the accounts become frozen and you can no longer access them. My case manager had cut me off at the keyboard. While I understand the whole privacy thing, it meant that I could no longer see the account from which our mortgage was automatically paid. For that matter I could not see what expenses were still being paid automatically from Art’s old accounts including some of our utilities, etc. Had I been warned that this was how the system worked, I would have taken care of these things ahead of time to ensure no lag in payments.

I’ll spare you all of the ugly details but suffice it to say that my mental image of my case manager shifted over time. I imagined them lying in bed sleepless at night designing new forms whose only purpose was to confuse me and delay the process. I imagined them not under soft lights but in a dark basement wearing a sinister grin while chainsmoking.

At one point I had asked my case manager what I needed to do to close out Art’s business account that still had a small balance in it. Any time she started a sentence with, “All you’ll need to do is…” my heart would sink and my blood pressure would rise. She matter of factly informed me that I would need to go the Secretary of State and obtain documentation indicating that there were no other partners in Art’s business that would be owed any proceeds and that no outstanding debts remained. “Oh, that’s all?” I replied with a not-so-subtle hint of sarcasm. “Gee that sounds easy.” Humor was not one of my case manager’s strengths. She was built for forms and bureaucracy.

A few days later I received a confirmatory  repeating the instructions. Well, they weren’t really instructions but just a statement saying that I would need to produce this documentation though they provided no directions on how to get it or what the documentation might be called. It indicated that I should bring this documentation with me to a local banking center when I get it. It was the next checkpoint in my banking Amazing Race.

Much to my own chagrin I produced the documentation. Once again with a certain air of smugness I showed up at my local branch of Bank of America with the letter in hand. When I presented it to the customer service representative she, with more smugness than me, said “Why did you get this documentation and why are you bringing it to me?!” I handed her the letter from my case manager with the instructions to which she replied, “those instructions just get sent out automatically but they don’t apply in Massachusetts.” “Do you mean the same Massachusetts that’s in my address on the top of the letter? The Massachusetts where you sent me the letter?” In my darker moments, I am like a dog with a bone in a battle of smugness and sarcasm. I won this battle while still losing the war.

I was told that what I REALLY needed to do was go back to the Secretary of State and submit a new form asking to essentially be made a partner in Art’s business so then I could take control of his accounts. I was told to confirm this with my case manager whose image had continued to decline in my mind. I thought she might be in prison by now for running a puppy mill.

I called my case manager three times the next day and waited on hold for 30 minutes each time. I never spoke to her which was probably just as well for all involved. When I finally reached her the following day she confirmed that her letter was wrong and the instructions I received at the bank itself were correct. That’s when it happened. Like every customer service call, this one began with the recording “This call may be monitored for quality assurance purposes.” Without any conscious thought, as natural as breathing I screamed into the phone, “Dear God – please! If someone is monitoring this call – help me! Do something!” We both waited – me in the hopes of the patron saint of banking. She waited for me to get a grip. We both lost.

I learned that my case manager was nothing if not consistent. She was unflappable. Without saying anything, she waited long enough in silence as if to say, “Are you done now? Is your little tantrum over?” I could practically hear her tapping her foot, seated in her torture chamber. But I wasn’t done. A little more calmly I said to her, “You know what you should do? You should take that remaining money you are dangling in front of me and just go shopping! The chances of me figuring out what documentation to get, getting it to you and you approving it are zero, so just go shopping on Art. Buy yourself something pretty.”

With my head hung low I went back to the Secretary of State and explained my circumstances. Certain that they probably would not help me unless I showed up with Art’s cremains, I was shocked by his response! He quickly gave me the log in information to Art’s business in the Secretary of State website and showed me how to make myself a partner! No identification needed. No security questions. I later regretted not saying that I was actually married to Bill Gates and needed to become a partner at Apple! For all my fury over having to prove my identity over and over again, I somehow was now enraged and weepy with gratitude at the Secretary of State’s loose standards.

In the end I followed my case manager’s instructions, got the require documentation, and closed out the account. It was the last account that existed in Art’s name. When it was all said and done, I burst into tears. Another footprint of Art’s place in the world was gone. Art Shirk Consulting was officially closed for business.

The work isn’t over. There are computer passwords, taxes, memberships and more to be undone. There are retirement accounts at former employers that remain unclaimed. I’ve finally stopped checking his email. I’m turning his phone service off. I’m often let wondering, “where is he now? What is he? How do I negotiate a relationship with him now?” Fighting with banks, credit card companies and utility companies actually gave me a sense of still fighting for Art…claiming what was his and ours. I realize that as infuriating as it has sometimes been, it makes me feel as though we are still a team. I miss being Art and John. His name is no longer on any of the accounts. And so another letting go happens and a door opens to claim something else to which only I have the password – the emerging sense of myself and my identity, integrating the extraordinary gifts and lessons of the man I have loved.

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When Art used to travel frequently for work, as he was leaving the house he would give me a forlorn look and tell me how much he was going to miss me. I’d look forlorn back and say, “I feel so bad for you. When you go away you’re all alone but I still have myself, and I’m such good company!” It made me laugh every time, no matter how many times I used the line on him. He would understandably roll his eyes, shake his head and tell me he never knew anyone who found themselves as entertaining as me.

Since Art’s death I’ve spent a lot of time in my own company. As it turns out, being with myself is a much bigger challenge than I had imagined. People have encouraged me to rediscover myself since Art’s death. “Rediscover the things you used to love to do,” they say. Others, including Art, urged me to allow myself to be transformed by this experience of love and loss. “If you allow yourself to stay open – to really experience all that this experience brings, it will change you deeply,” he said. I’ve been challenged by others to give myself full permission to pursue my deepest desires and whimsical impulses.

Each of these ideas sounds inspiring and intriguing to me. The key to all this self-discovery and transformation is simply being with oneself. With 150 days under my belt since Art’s death one would think that I’ve had plenty of time to be with myself. As it turns out I’ve spent lots of time alone but very little time with myself.

As it turns out being alone and being with oneself are not synonymous. It is safe to say I have mastered the alone part of the equation. My daily routine remains largely the same as it was with Art but each moment is punctuated by his absence. I walk Mario alone in the morning and after work. After I sit in our backyard swing alone. I go into the house and make dinner alone. This alone. That alone. I sink into the sofa and one of the picture books Art made for me catches my eye on the coffee table. I feel as though everything points my attention towards Art, his absence and my memories of him.

In the last couple of months I have consciously tried to shift my focus back towards me. The first time was excruciating as I struggled to look fully at the image of myself that came into my mind’s eye. The image was of me sitting alone, perfectly still. Small. Vulnerable. In this view, for the first time I did not see the absence of Art but the fullness of my new solitary being. It was like one of those optical illusions that contains two separate images and if you adjust your view slightly, you see one or the other. My perspective kept shifting. In one perspective, it was as if Art had been cut out of the picture with scissors and I was left standing next to the gaping hole. In the other, nothing was missing – it was just me. Alone but still whole.

For maybe the first time my tears weren’t all about Art, they were about me. I felt fully the heaviness of my own body and the way it feels weighed down. I had been unable to look closely at myself for many months. It’s like when you pass by a mirror or window and catch a glimpse of your reflection out of the corner of your eye and then turn away. I have been unable and unwilling to stop and look at myself full-on. I haven’t wanted to see myself standing alone, so tired and sad. I haven’t wanted to claim my own space in the world and occupy it fully without Art.

I knew it was time to begin the process of paving a path back to myself so I signed up for a five week meditation class. I have meditated off and on over the years but never with the discipline I’d like.  Turns out that spending 90 minutes a week on an uncomfortable cushion can be a real shock to the system! Being with myself is much more than simply noticing the absence of Art. BEING is an active process, not a passive state of being. It is more than the absence of Art. It is coming into full awareness of my thoughts and feelings and simply sitting with them.

What has quickly become most noticeable is It that being with myself means being with the duality of everything. Immense grief alongside gratitude. A longing to keep Art close while also needing to let him go. A desire to resolve things while also surrendering to the unfolding of life on its own terms. Moments of laughter that lay on top of a deep, underlying sadness. I suppose this is nothing new. Many of us have felt both dread and excitement when we’re about to take a leap into new territory. In my deepest sadness I also recognize the depth of my love for Art. They are opposite sides of the same coin.

One day last week while I was walking home from the subway, I had a minute where I nearly forgot that Art had died. In that moment, I felt the way I always felt walking home prior to January 10. I was excited, thinking about everything I’d say to him when I walked in. I anticipated cooking dinner together, his eagerness to hear about my day and mine to hear about his. Suddenly reality smacked me upside the head again and I came back to this new reality. I noticed how I lost all my excitement. When I take a deep breath and turn inward, I realize I don’t feel as courageous, certain or adventurous as I did when Art was alive.

And so now the real work begins. While being with myself means recognizing the range of thoughts and emotions I – and all of us – encounter, I’ve discovered that the bigger challenge is not simply noticing all my thoughts and feelings. The bigger challenge lies in not reacting to all of them. Real growth lies in trying NOT to change them, dismiss them, fix them or otherwise obliterate them.   We are socialized to view difficult thoughts and feelings as problems to solve. In noticing that I feel less courageous, my first inclination is to try to solve that problem…to figure out a way to regain my courage and demonstrate it to myself. But instead I stop and just notice how it feels to be less courageous. I believe that if I can be with my own lack of courage, perhaps I can be with others who are struggling similarly. Maybe it will strengthen my empathic muscle and will, conversely, heighten my awareness of those moments in the future when I feel brave. Maybe simply being with my longing to have Art back with me, opens me up more to feeling the fullness of our love. He may be dead but love is still alive. It is still in me and only when I can slow down enough to really be with myself, can I find this reservoir of love – the love so generously bestowed on me by others and the love in me that needs to find its full expression.

I suspect, like many of us, I’m quite good at being with others in both their pain and joy. I’m a pretty good listener, able to really feel the feelings of others, hear what’s being said beneath the surface and be fully present. And like many of us, I don’t really apply those skills to myself. It is easy to turn away from oneself, to be distracted by the world around us and consumed our daily obligations and schedules. But now, to truly discover who I am separate from my identity as Art’s husband (the identity I have loved more than any other I have claimed!), I have to extend the same deep listening and presence to myself.

When I quiet myself, listen and observe with more heightened awareness and presence, my view of myself starts to expand. For example, until now I thought of grief as a big, dark, impenetrable wall.   It all felt the same – overwhelming, relentless and unpredictable. Nothing distinguished one moment of grief from another. Slowly I have started to notice that all grief is not the same. It has many shades and sources. Sometimes my grief is sheer loneliness. Other times I grieve at my memories of how Art suffered. And at other times I grieve when I remember how it felt to felt to be so deeply loved…to be greeted with loving surprises each day, with random messages of love and encouragement. All grief is not the same.

As the subtleties of grief – and other emotions – become clearer, I also notice that all of me is not grieving all the time. If I look at myself with a sharper focus, if I watch and listen with more awareness, I see parts of me that are excited, anticipating something new, still marveling at the world around me. I think about the times when I’ve been sick or in pain and how I’ve allowed the sickness or pain define me. What if we were able to hold a more balanced view and see the parts of ourselves that are not sick, in pain, grieving or overwhelmed? What if I could still see my wholeness while feeling so broken? At any one point I am not defined by any singular thought, emotion or state of being. None of us are.

When Art was diagnosed with dreaded IPF, we set a very explicit intention of opening ourselves up not just to one another but to the world around us…to share our experience, challenges and joy in the hope that we could continue to open ourselves to love. We did not want to get to the end of his life and feel as if we had shrunk back but rather wanted to feel that we had leaned into the richness of life. And we did. Now, if I am to continue to live in this same way I see that it requires me to be fully with myself. To be with my pain and suffering but with my joy and resilience as well. There is a deep vulnerability in being with myself – opening myself up to the parts of me I love and those that…well…I have less than love for. It is all there and is all real.

And so, if you stop to listen, look and feel deeply within yourself, what do YOU find?

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Art’s wedding ring

When I brought my first-grade pictures home from school, my parents didn’t notice anything unusual. It showed a chubby, neatly dressed boy with glasses smiling into the camera looking a little shy. It seemed to capture me accurately. The lie wasn’t discovered until three years later when, in a parent-teacher conference, my fourth-grade teacher told my parents that I often squinted in class. She wondered if my parents had ever taken me to an eye doctor. They were perplexed by the question as they had dutifully gotten eyeglasses for me at the first sign of a vision problem.   They understandably assumed I wore my glasses every day and my picture confirmed this for them. Or so they thought.

The gig was up. My teacher told them that I never wore eyeglasses in school. The truth was that I had been teased early-on in first grade by two girls and I was too ashamed to wear my glasses ever again. Every year when school pictures were taken, I’d subtly slide the glasses onto my nose. As soon as the last camera flash went off, my glasses would go into hiding for another year.

The pictures conspired with me to withhold the truth. The photographs created a certain impression of me that was false. The boy in the photographs didn’t match the reality of my everyday life.

I have recently found myself struggling with this dilemma again, though the specific shape of the situation is different. Last week I removed my wedding ring for the first time. I’m not sure if I’ll put it back on again but for the last few weeks it hasn’t felt right to me. It has felt as if my ring was telling a story about me that isn’t entirely true anymore.

For me, my wedding ring represented my marriage to Art. It represented our commitment to one another – the ideals, values and promises we sought to live by each day. It represented the fact that there was someone waiting for me at home, someone with whom I shared every detail of daily life. I loved my ring and the constant reminder it provided. I would often squeeze my fingers together so I could feel the ring on my hand and feel a surge of pride, knowing I was married to Art. I would sometimes spin it around on my finger and go into a dreamlike state thinking about him, our life together and our future. I liked to pull it half-way up my finger so I could see the lasting impression its edges made in my skin, reminding how durable our commitment was and how much a part of me our marriage had become. It reminded me that he was home waiting for me or away on business thinking of me as I was him.

Often when I’m riding the subway, I notice whether people are wearing wedding rings or not. If they are, my mind wanders as I imagine who they are married to, how they met, what their spouse looks like and what their marriage is like. Their wedding rings tell a story, even if I make much of it up myself. I wondered if any of them wondered about the story hidden behind my ring. Could they imagine their way to Art?

Lately I have noticed that having the ring on my hand doesn’t match my how I feel or my new daily reality without Art’s physical presence. Like my eyeglasses, it was telling a story about me that no longer feels true. I certainly still feel married to Art but he isn’t home waiting for me or away on business anymore. We don’t go to bed together every night. Our ideals, values and aspirations live just within me now. They cannot be expressed in a visible or dynamic way here in the physical world. After Art’s death, when I would squeeze the ring between my fingers as I had done many times, it just hurt. It didn’t release that little charge I used to feel.

Art and I discussed many things about death and life after death. We both believe that when the spirit or soul leaves the body, the body no longer really represents the person. They simply aren’t there anymore. Their spirit – their essence – has left them and the body remains behind, merely a wrapper that contained their spirit while here on earth. It has felt to me as if my wedding ring is similar. Once Art died, the spirit of our marriage was no longer contained in that ring. It became a piece of jewelry that lost some of its soul or magical powers. My wedding ring will always represent my abiding love for Art and the commitment I made to him, but the reality of our marriage is very different today.

Compared to my ring, Art’s ring tells a different story. His ring originally belonged to my paternal grandfather and we believe he brought it with him from Sicily when he came to the United States. When my grandfather died, the ring went to one of my uncles. As it turns out, my uncle was gay and had led a very closeted life until he was 70 years old. At the time of his 70^th birthday he had been diagnosed with lung cancer and seemingly did not have long to live. At his 70^th birthday gathering, he invited a group of his close gay friends to join our family for the first time. It was his coming out of sorts. He lived to be 75 and I think those short five years provided some healing for him. Before he died, he gave me the ring.

When Art and I married I slid this ring onto his finger. It’s a thick gold band with interlocking gold loops that form a small chain across the top. We decided that the gold chain represented the connectedness of the story behind this ring – the bringing together of generations of Gattos. It represented a place in the Gatto family that now belonged to Art and identified him as part Gatto too. It carried the first story of coming out in my family. It linked us back to my grandparents and their homeland. And when we married it represented Art’s commitment to me. In the same way the ring infused Art with this history, Art did the same in return. By wearing the ring, Art has infused it with our love story.

When I took my wedding ring off my left hand, I slid Art’s ring onto my right. When I squeeze my hand together, the ring grounds me. I know how much Art loved this ring. It seems to bring my whole life together. I have always loved the part of wedding ceremonies when the officiant explains that rings are a symbol of love and marriage as they have no beginning and no end. Now I wear the ring and it reminds me that a story is still unfolding. My family history and my marriage to Art are the most profound pieces of that story, but the ring reminds me that there is more to come. When I eventually and finally take this ring off, it will hold another chapter that hasn’t yet been written. And all the stories being represented by this ring are part of an even bigger story of love, struggle, triumph and the durability of the human spirit. This ring and this story are what are true for me now. It links me to the past and promises a future.

Taking my wedding ring off feels like another “coming out.” Coming out often happens when we can no longer pretend to be someone that we aren’t. It is a way of claiming our own truth and defining who we are – allowing all the pieces of our identity to come together in a new way. It allows us to embrace who we are in a more authentic way. Many people postpone coming out because they aren’t ready to face this reality. In the case of coming out as LGBTQ, sometimes people even loathe this part of themselves and keep pushing against the truth – trying to fake it and even deny the truth to themselves. I get it. Not a day goes by when I don’t wake up wanting to believe that Art is still with me. Though it happens a little less frequently now, every day I’m hit by waves of nausea when I fully embrace the truth. I feel weak and dizzy. I don’t want to face it and I definitely don’t want to integrate this new part of my identity – that I am a widower.

My heart is broken and keeping the ring on felt like a betrayal of the truth of my pain – a betrayal of Art and the huge gap his absence has created. Continuing to wear it – at least right now – felt as if I was acting as if nothing had changed. My grief is partly about missing the simple pleasures of sharing day-to-day life with one another. I miss the little notes we left for one another. I miss his late afternoon texts and messages telling me how much he was looking forward to me coming home. I miss making dinner together and catching up. Wearing the ring didn’t acknowledge the huge loss I feel in my daily life.

All of this has made me wonder what else in my life isn’t aligned. Do I create images or impressions of myself that are not entirely true? Do I compromise who I am or allow my identity to be altered by the world around me rather than by the values I hold dear? Are my values apparent to others and evidenced by how I live?  Am I living in alignment with all I know and feel is true about me or am I somehow faking it?  For now, I am one step closer to speaking and living my truth on my terms.  What about you?

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By John Gatto, Art’s husband

As Art’s disease progressed and we moved towards the end of his life, he became well-practiced at the art of surrender.  (He wrote about it in a blog that’s available on www.gratefulness.org if you haven’t seen it).  We regularly talked about this idea and the ways in which surrender was made real for him.  He surrendered to his body, its decreased capabilities but also to love and the mystery that lies beyond the end of life.  He surrendered to his increased dependence and vulnerability.  Together we grieved our losses — both individually and as a couple.  We grieved our inability to move more freely and walk our dog to some of our favorite places.  We grieved Art’s inability to complete daily tasks that provided a sense of purpose, and we grieved the loss of the life we imagined we would share into old age.

For approximately the first year of Art’s disease, his condition would remain stable for a couple months at a time.  We developed an adaptive pattern with each decline.  First we would simply observe it and acknowledge the change.  Next we’d discuss strategies for adapting to it like upgrading to larger oxygen tanks, moving more slowly, adjusting our schedule, etc.  Finally we’d implement the changes, restore some sense of normalcy then a few months later do it again.  When the speed of his decline accelerated, we realized that our old strategy would no longer work.  Increasingly we needed to surrender more quickly and not become too attached to his new level of functioning.  It was as if we had been living on a sheet of ice. Though slippery at first, we could eventually find our footing and restore our balance.  But then the sheet of ice was placed in a river and began to move downstream.  There was nothing that could ground us anymore.  We could no longer find solid footing amidst constant change.  For Art, each day brought something new to surrender.  Somehow amidst my focus on him, I lost sight of my own process and version of surrendering.

Now in the month since Art’s death I see that the sheet of ice has melted and I now find myself flailing about in the river.  I now have my own surrendering to do.  An important choice faces me:  I can either swim to shore and stand on firm ground or I can surrender to the currents that are now carrying me in new directions.

It only recently occurred to me that as Art was declining, I was treating surrender as a zero-sum game.  I now realize that I tried to compensate for all that he had to surrender.  When he surrendered to uncertainty, I tried to make things more certain and predictable.  When he surrendered to physical limitations, I tried to compensate by doing what he could not.  When he surrendered to vulnerability, I compensated by trying to create more safety.  These were all the right things to do and part of what allowed him to navigate his journey.  And now mine begins.

When I think about surrendering to the currents of the river, I don’t think of it as defeat in any way.  It isn’t a fatalistic giving up or being pulled under in a panic.  It is joining with the natural order of things and trusting that a force greater and wiser than me will guide me.  It is about not trying to control the currents or swim against them but to join with them in curiosity, openness, hope and faith.

So what exactly do I have to surrender to?

First I surrender to grief.  I feel fully what it means to go to bed alone at night and wake up the same way without the comfort and joy of Art’s presence.  I surrender to the physical and emotional manifestations of grief…the waves of nausea and dizziness that hit me…the sudden, uncontrollable sobs that happen in the supermarket, shower, car, or anywhere at any time.  And when I surrender to the currents of grief, I notice that they lead me to a place of love and gratitude.  When I let myself experience grief fully, I open myself up to the depth of love I feel for Art and the love he felt for me.  Yes, the sadness is crushing.  But it is so because the love was and is limitless.  Sometimes surrendering to love leads me to more grief and sometimes grief leads me to love but either way, the cycle almost always includes both.

Next I surrender to the forward movement and momentum of life.  The other day, amidst the bone-chilling cold of winter, there was a spring-like afternoon.  People shed their winter coats, slowed their pace and happily soaked in the unusually warm sunshine.  It suddenly hit me that we were moving towards spring.  I realized that we will no longer be in the dark winter of Art’s death.  I panicked.  I’m not ready to leave that time and place.  The fact that life moves on often feels like good news and bad news.  I’m not ready to surrender to the passing of time and the season of re-birth.  Yet when I begin to surrender to the currents of time, they carry me to a place of new possibilities.  As time passes I notice that Art’s footprint in the physical world starts to decrease.  Things in our house no longer look the same as when he was alive.  His phone doesn’t ring.  His mail has slowed down.  I realize how much I still want him to be seen in the world so I press down hard, as if applying the brakes.  But when I surrender and lighten up on the brakes, I feel a flicker of hope and begin to dream into the future a bit.  I stop counting the days since his death and start to look forward, beginning to open myself to the unfolding that is happening even in this moment.  Art and I had talked about this – where might I live after his death?  Might I find love again?  What places do I want to travel to that we had never gotten to?  None of the answers matter but the simple act of wondering about and embracing a future does.

I must surrender, too, to the mysteries of life and death.   In my head I want to make sense of it all.  Like countless philosophers, theologians and otherwise curious humans, I want to know what lies beyond.  I want to know where Art is and in what form.  Before Art died, we talked about the ways I might feel his presence after his death.  I’ve gone searching for him like a private detective, hot on the trail to find evidence that his spirit is here.  I impatiently look inside and out to catch a glimpse of him.  If my brain can just figure it out, I can rest with more certainty that Art remains with me.  And then I surrender to the mysteries of life and death and wonderful things happen. I shift my focus from my head to my heart and begin to feel awe – a marveling at the universe and the Universal spirit that Art and I believed surrounds all of us.  When I surrender to the mystery, powerful things begin to happen.  This requires some explanation:

I’ve always been fascinated by dreams.  When I worked as a therapist I studied dreams so I could explore them with my clients.  For several years I was in a group with other therapists where we would assist each other in analyzing our own dreams, searching for clues to our subconscious.  Art and I always discussed our dreams in the morning.

One night a few weeks after Art’s death, I went to bed and reluctantly talked aloud to him for the first time.  I told him that I was ready to experience his presence and my heart was now officially open to receive him.  I told him that I had been afraid of experiencing him…afraid it would overwhelm me.  I told him that I knew that if he had any say in the matter, he would make his presence known in a way that would be meaningful and comforting to me.  I trusted he wouldn’t make our chandelier rattle or the lights flicker, but rather come with his loving gentleness and bright smile.  And he did!

For the first time since his death, Art appeared in my dreams.  Before Art died we had agreed that I should take a trip following his death.  It would be a time for reflection and healing.  In my dream I arrived at the airport to take this trip.  The airport was crowded and as I walked toward the ticket counter I saw Art standing there, preparing to take a trip of his own ahead of me.  He turned to me and we made eye contact through the crowd and smiled.  Neither one of us panicked or ran towards the other.  We simply noted one another’s presence, had a deep sense of connection and then he disappeared into the crowd to catch his flight.  He was wearing my clothes, as I have worn his since his death.

When I awoke and recalled this dream, it was perfect!  Our connection was exactly what I needed.  It wasn’t too intense or overwhelming and there were so many comforting symbols in it — him travelling ahead of me, him wearing my clothing and the calm we both felt.  When I finally surrendered to the mystery of death, the dream came.  I have come to believe that there is no singular or right way for me to feel Art’s presence.  I just need to open my heart to wherever the currents are taking me.  Get out of my head and get into the river and trust.

Most importantly I must surrender to love.  The wounds of loss cut deep and sometimes love feels like salt on the wound.  Grief and loss can harden me.  I feel alone and vulnerable.  Things that never were scary suddenly frighten and overwhelm me.  There are countless decisions to make and problems to solve.  Yet, when I soften and surrender to love, color returns to my world.  I feel the generosity of family and friends who surrounded us and have stayed with me in my grief. When I surrender to love I feel alive.  I feel connected to the Divine – to the universal spirit that unites all of us and is at the core of us.  I recognize that I am not alone.  I am not the first nor last person to lose a spouse.  At a time of turmoil in our country and world, surrendering to love eases my anxiety and refreshes my perspective.  It illuminates a path forward and renews my spirit, when there are so many forces that can seemingly crush it these days.

None of these things eliminate my sadness or stop me from wanting Art back beside me.  I would give anything to have these insights AND also still have Art here with me.  But I also surrender him to the Universe – I release him and celebrate the freedom he sought from his body so that his soul, in its purest form, can soar.  I feel weak at the knees in doing so, as if I may crumble.

What I also know, though, is that our vulnerability is our strength.  Art and I made conscious choices to try to open ourselves up during his illness and death.  As frightened as we were and often as embarrassed as he was, we believed that there were lessons in all of this.  We believed – and were proven correct – that the most powerful conversations and connections happen amidst vulnerability.  We often fight the currents.  We choose to swim to more solid ground.  We try to change the shape or flow of the river.  We try to solve the mysteries with knowledge and intellect.  We extract our self-worth and sense of competence from feeling as if we have regained control of a chaotic situation.  But when we admit all we don’t know and all that seems so uncertain, we become more human and accessible to one another.  We open up in a more real way and our connections deepen.

I cannot conquer grief, the forward movement of life or the mystery of death.  I can surrender to it all.  And if, together, we could collectively surrender to the deeper wanting of the currents…to the wisdom of the forces that surround us, I believe it would transform us.  It is already doing so with me.

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(previously published at Gratefulness Website)

I walk Mario the Labradoodle along my favorite path underneath sun streaming through an evergreen canopy…it is glorious. The ground in front of me begins a gentle slope upward – so gentle that you probably wouldn’t notice it. To me, though, it is akin to a steep slope at a high altitude, and I know that if I want to avoid shortness of breath or oxygen deprivation, I must slow down my pace by half…and then by half again, and crank up the O2.

At first, and sometimes still, I get frustrated and exasperated by this betrayal of my body. Sometimes I want to just give up…sometimes I become so impatient….I find I miss the life I used to lead that involved HURRYING to get somewhere or RUSHING to get something done. Hurrying can feel exhilarating and fun.

These days, I say a mantra to myself as we begin our trek up the gradual incline, and it is this:“Slow it down by half, and half again…Enjoy it twice as much…”

More and more often, this helps me shift into acceptance of my physical reality and its limitations. I realize that this is how it is, and that moving really slowly is what I must do to get enough oxygen from my tanks into my bloodstream. I begin to slow down. With that acceptance comes a letting go, and a relaxing…and moments later, a mini-exhale and an opening of awareness. Then, “presence” happens.

In the best moments at my new very slow pace, I begin to notice the wondrous subtleties of what is around me…the soft movement of the air…the shimmering light through the trees and how it illuminates all that it touches…the creaks and groans made far above by swaying branches and trunks…the ALIVENESS that surrounds me in all directions. I sometimes pop into a sense that I AM the trees and the light and the breeze and the ground where time stands still. The hair on my arms stands up and I imagine I feel the vibration of the earth in my belly.  In these moments I feel more present and alive than I have ever known, and it fills me with intense gratitude. By moving very slowly, a whole world opens itself to me that I may well have missed before.

There is another phenomenon that awakens in me at my newfound low velocity…it is the profound impact of simple kindness.

I started thinking about kindness and what it means to be kind a few months ago. This came about because of how deeply grateful I noticed I felt in moments whenever someone took a moment to extend kindness my way. I have led an outrageously privileged life, and never before now have I known what it means to suffer. Over the past few years with Idiopathic Pulmonary Fibrosis (IPF) I have begun to experience a degree of suffering, and at times in the midst of that suffering, have been met with a simple gesture of kindness that has just rocked my world; from people I love the most, and from strangers I have never met…from big kindnesses, to the simplicity of a smile or a kind word.

I have learned that in the midst of suffering, a small dose of kindness can radically shift someone’s (or my own) experience…. and perhaps through that, transform the world.

And so, when I “Slow it down by half and half again… Enjoy it twice as much,” what occupies my awareness are the PEOPLE that I pass by…sitting on a bench or walking along. I see them in the way that we do when we pause and really intentionally look to take in and feel deeply what it is that we are encountering.  And, what I know, and also notice, is that so many people carry heavy burdens on their shoulders every day of the week. In my status quo of moving along at my normal pace, or hurrying faster, I fail to even see them.

My intent these days is to really notice, notice even more, and then act…often with just a smile and a “hello,” and sometimes with a few words of acknowledgement or encouragement. Sometimes I can see and feel that there is an impact…and often I am often uncertain if my gesture has made any sort of difference.

But either way, I know that my own heart is immediately filled with love and unbounded gratefulness. As I contemplate the ending of my life, I know that I aspire to be a conscious, kind, and compassionate person. I am painfully aware of the moments when my ego or victimhood puffs itself up and I react in ugly ways. And so, I begin again — today is always a new day, ripe for being awake, being present, and being kind.

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