When a terrible disease ravages someone you love, the mourning process begins long before they finally pass on. Kübler-Ross (1969), in her study on death and dying, described five stages of grief including denial, anger, bargaining, depression, and acceptance. But Kübler-Ross was initially focusing on those who were dying, and not so much on those who were dealing with personal loss of any great significance, which she later came to recognize.

These stages are not linear, either, and can occur in any order, if at all. Women tend to experience all five stages more than men. They can be cyclical, too, with two or more occurring in an almost extreme emotional roller coaster. For both the dying and the loved one, getting to the point of acceptance does not always happen at the same time. The dying often reaches the stage of acceptance before their loved ones. But if and when both reach the point of acceptance, where communication and reflection can be experienced, a more dignified death can be found.

I’d add a couple of additional stages, or at least notable elements, to the stages of pre (and post) grieving. That includes fighting to maintain control of the details in their lives. The opposite is the disruptive feeling of vulnerability when control is lost which can lead to related stages of despair and anger.

Another related stage involves trying to make order in one’s life. Especially when the world around you seems to be in chaos, small efforts to create order can take on an outsized importance. Cleaning out cupboards, putting away old records, sorting through old photos, are just a few example of how the person facing loss may attempt to build a sense of order in a life that seems otherwise out of control.

Recently, I heard this statement made by someone who is facing the inevitable loss of his longtime spouse who is in the late stages of Alzheimer’s disease. I’ve paraphrased it per my own cloudy memory.

I feel like I’m in a carnival outhouse sitting out in a field, and the circus is packing up to leave without me.

While he didn’t elaborate, he was trying to express his feelings regarding the situation he found himself in now. I’ve been thinking about this and cannot help but connect it to my own experiences and ruminations.

First and foremost, there is the overwhelming feeling of vulnerability, of literally having your pants down in a crisis, or a formidable change that is going on around you. You’re stuck. It is hard to move forward without first finishing the primary business at hand. Panic sets in and it is hard to make decisions. Yet you’re also worried about being left behind, and by the act of moving to a new location – mentally, emotionally, and physically – and the unknown that comes with that. But even more so, it is a fear of being left behind by the ominously fast progression of a disease that robs you of the one you love, again mentally, emotionally, and physically.

The carnival/circus represents fetes of apparent magic, gravity-defying acts, seemingly impossible, often nonsensical, frightening in their dangerous distortions of human entertainment, and the funhouse mirrors that twist and distort our vision of reality.

The world around you no longer makes sense and you feel vulnerable, scared, afraid of being left behind, fearing for your loved one and a future you cannot envision without them. It literally scares the shit out of you… And yet you know you have to keep moving to survive. Because that’s your role here.

Of course, the circus could also represent your loved one, the person who was the highlight of your life, with which you shared the literal stage of life, it’s bright lights, music, the comedy and drama of a life fully shared. Either way, it all seems so unfair.

Anger rushes forward. Anger at what fate has thrown you, your loved one, the cruelty of the disease. There is no preferred or better way to die of a disease. Cancer kills the body slowly while eating away at the person. Alzheimers eats away the person while leaving the body to deteriorate at a slower rate, until the parts of the brain that operate the body begin to lose their synaptic connections.

Either way, these diseases are cruel – to the loved one who suffers them, and to the lover who must endure the pain of watching, of frustrating efforts to try and overcome the diseases’ manifestations, the cruel teases of normalcy and strength that suddenly appear and then, as a wisp in the winds, they disappear to the mists that hid the light in their eyes.

Whether you want to or not, you are, and will be… the survivor. The one who will carry the stories forward until they can be shared fully with a new generation. You will be needed by others who will benefit from your wisdom, humor, insights borne of long experience. The fates have determined that your place is here…in this world…where you are still needed.

The journey along side the dying of a loved one is dark and painful. But it also has its moments to be cherished. The fleeting glimpse of a smile, a flash of humor, the small gestures that show you are still connected to this loved one. You have been chosen for the honor of being beside them on this journey to the end of this life. You, however, will stay behind, their partner only until the gates of passage open to the other side. Until death do you part.

It sucks. It hurts so badly, the pain is physical, palpable. Breath… breath… You are still alive. And they will always be with you, and waiting on the other side to greet you when your turn comes, naturally, when the fates determine it to be so. In the meantime, treasure each moment with your loved one as a gift. Soon enough, there will be only memories that you will hold onto tightly, then share with others when the right time comes.

Today is the birthday of several good friends. And I wish them LOTS of happiness as they celebrate another year of life to share with loved ones and good friends.

It also is the inauspicious anniversary of my late husband Keith’s passing at only 54 years old…the same age that I am now. You can read lots elsewhere in this blog (starting at summer of 2012)  about the transition through his rapid decline to death to the journey of grief and resilience that I have undergone. He was my best friend, lover, and husband of 30 years. He was someone I would trust without question, share in heartaches and celebrations, and the journey through parenthood raising our two beautiful daughters Sarah and Anastassia.

Today it has been three years since your passing, Keith. A lot has happened. I have grieved… and still do. But I have also moved forward with many of life’s demands and the promises I made… to you, and to myself… and to others.

I have embraced joy in the form of a future grandchild expected in December. And I’ve embraced building a life filled with happiness and love in my marriage to my second husband, Steven, who understands that you came before him. He honors you and protects me. Sometimes he is quick to get upset, mostly out of frustration, when he feels unsuccessful in protecting my interests, or feels slighted by a family member. He is learning the art of nuance and patience. He is learning that what others say or do is not about him, nor is it meant to impugn him. He is learning to let go of the wounds of his other life before me so that it doesn’t fracture an otherwise beautiful relationship.

And I am learning to feel your presence as a guide, to look around me and examine it through your eyes. This has become especially important as we move forward building a new home on Perry Road. You and I and Steven all came from a tradition of craftsmanship. This included a respect for workmanship, the materials, and the process. Things were carefully planned, constructed in the right order, with attention to detail. When it came to homes, it was about making them last, energy-efficient, and beautiful.

As I look at the workmanship of some of the rough framing crew, I am appalled. It has left me – and especially Steven – stressed. We are determined to keep the project moving forward, but only if the workmanship is up to our standards. It is hard to let go. And some things, I admit, I am willing to let go. For now, after several days of stressful challenges to the contractor, I am willing to see what he will do to keep to his promise to address our concerns.

If not… well. Keith… what would YOU do? I ask myself that… every… single… day…

Yes. It’s been three years. But I still depend upon you to guide me and give me strength to keep moving forward.

with love always,

Mara

Photo: Keith and me in Fiji in 2001 chaperoning students.

We were chaperoning a large group of community college students on a study tour to our old stomping grounds in the South Pacific. Keith felt like he was the "dad" to them all - young and old.

We were chaperoning a large group of community college students on a study tour to our old stomping grounds in the South Pacific. Keith felt like he was the “dad” to them all – young and old.

[Apologies, dear reader, for the length of this post. It captures many reflections and milestones from the past few months…]

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Keith walks along the coral shores of Tongatapu, Tonga, an island nation to the east of Fiji, 1993.
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The inauspicious anniversary has now come and gone and with its passage, I feel both a deep sadness and a lifting of a veil. No longer do I look back a year and remember what I was doing, how Keith was suffering on that very same day the year before, or the traumas of his treatment. Now when I look back a year ago, I see how much the earth had quaked, my road had shifted beneath me and my children, his family and close friends. No longer would there be any chance of his voice on the other end of the phone, a person to ask advice or crack a joke. No longer would we be able to imagine a time when he could have recovered.

At this time a year ago we began a long dark road of healing, like going through a dark tunnel where you would not know whether your footing would hold you, where you move forward both numb and carried by the faith of good will in those around you. Once that anniversary passed, September 1st, 2013, the first year anniversary of Keith’s passage to another plane of existence – some call it Heaven, some call it an afterlife, another dimension, another life… but just not one here, on this earth, with us, within reach – I no longer felt compelled to think about what was going on a year ago that day…

For the weeks and months before that anniversary, I was doing just that… thinking back to the almost precise day a year before. What were we going through? What sad decision was being made that day? How were we coping with it all? How was Keith even capable of surviving as long as he did? I reread every word of the diaries I wrote throughout that summer, right up through the day he died. Somehow, though, I’d never written down how those final moments passed. In reflection, a year later I write these words:

““““““`
Diary, Sunday, 9/1/13, 3:15 pm

It’s September 1st. Can’t believe it’s September 1st. “I think I just saw Dad take his last breath,” she said a year ago. Stassia had looked up at me in the evening dimness of the darkened bedroom crammed with the hospital bed against the kingsized bed Keith and I had shared. Sarah lay groggily waking from her nap not quite taking it all in. I walked up beside the hospital bed as Stassia kneeled from the bigger bed that hugged against it. I felt his neck, then leaned down over his mouth and nose to see if I could hear him breath. Standing straighter I looked at his chest that no longer moved. Then lifting my eyes to his that were gently closed, his mouth still slightly open from his previously labored breathing, I looked back to Stassia and now Sarah. “Yes, I think you did, sweetheart.” We stayed like that for a few minutes, not quite knowing the next move. Then, finally, we each laid our hands on Keith and said a quiet prayer for him, wishing him safe travels on his journey home… that place beyond our reach but where he would be free from the pain of his disease, the humiliations of sickness and crude attempts to stop its crushing march towards death. He was free of it all now. We were sad, but relieved as well.

I remember all of this now. Even while I cannot believe that a full year, a full 365 days have passed between now and that moment when he left us behind. I remember sending the kids downstairs to tell their Uncle Gino and Aunt Danette who were busy preparing dinner in the kitchen. I had left them just a few moments before, a little while after sending Stassia upstairs, telling her to wake Sarah, that it was time for her to give dad his meds. I remember feeling a tap on the shoulder even while no one was there next to me, and a sudden urge to follow Stassia up the stairs, entering the room only a minute or two after her. I remember the room was mostly dark except for a couple of nightlights and a yellow cast from the small antique stained glass lamp on the vanity.

I remember that after sending the girls downstairs, I picked up my iPad which had been playing music softly while winding through a series of selected family photos I’d put together for Keith to see… in case he had ever opened his eyes those last few days. The music I’d selected was meant to relax him… and us, yet now whenever I hear those songs, I begin to choke up, so many were about the love and caring and commitment to each other that a couple would share. I remember then pulling up the “poem” I’d written the week before, what would eventually become part of his eulogy that Sarah would read at his funeral. In the dimly lit room, I read it aloud to Keith and made some minor adjustments, as if he were directing me from beyond to smooth out a passage here or there. When finished, I laid my hand on his arm and my head on his chest and just lay there breathing… for both of us. It was over. His suffering was over. What lay ahead for me, I knew not what at the time.

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This past summer was a time of many travels, with Keith’s spirit following along nearly every step of the way. As we prepared to travel, a long-awaited package arrived in the mail containing the cremation diamonds Keith had asked for. It was a strange reminder of a stranger request Keith had made and that I had reluctantly fulfilled. Our travels, however, were also preceded by a rather unsettling dream. I wrote about it and then my sudden epiphany of what it meant:

Dream, 7/1/13
First one with Keith in a long while. It seems.

Keith was on the other end of the call and the conversation was as normal and casual as if he were still alive.

Me: hi
Keith: how are you?
M: Good
K: Good to hear. Now, Jess said she couldn’t translate for you. She’s gonna be busy. 13 Hurdles were coming.
M: Yea. I’d heard about that.

As I answered holding the phone to my ear, I stepped from outside to inside of a house, leaning low to pass under a closed window, trim painted white. Maybe it was a Dutch door but with the bottom open.

My alarm went off and the dream ended along with the conversation. I could still hear Keith’s voice in my head. It was good to hear from him again.

Postscript: Today is the 11-month anniversary of Keith’s passing. After the dream, I did a quick online search for “13 Hurdles, grief”. This is what I found:
http://mysonzack.wordpress.com/2011/09/09/hurdle-13-going-home-again/

Appropriate in many ways, even more so because on Wednesday, July 3rd, I’m taking my new friend back to my childhood stomping grounds.

And on July 27, what would have been Keith’s 55th birthday, me and the kids fly back to Fiji to spread some of Keith’s ashes and rejuvenate. Jess is our friend’s wife who own the Beachouse in Fiji where we’ll be staying.

PSS: After falling back to sleep, I re-awakened feeling I knew what the 13th hurdles were. I was supposed to take Keith’s ashes to New York, too. It is about “his” going home, not just me. I think he wanted me to bring him back to Ashdown Road, maybe the pond there where I sat with Sarah in my lap and took a photo of the very large Tri-color Heron that walked by me. But it could also be that I bring him to a lake in the Adirondacks for his friends to help spread his ashes…. hmmmmm…. which way to go….

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Returning home to Upstate New York

Over the July 4th holiday, I went back to upstate New York to visit family and old friends and introduce a new one. We met up with my brother and his family for lunch and then Keith’s best friend Michael was there to take me and my friend on a tour of our childhood memories around the Saratoga region. The first stop, though, was Ashdown Road where I knocked on the door of the first home Keith had ever built for our family. And, after securing permission, Michael and I shared in the act of spreading some of Keith’s ashes on the edges of that same pond Keith had dug, and where the Great Tri-color Heron had visited me when Sarah was born.

The next day, as the light of the sinking sun glittered across the quieting lake waters, I handed my iPhone to my friend to record the event. Larry stopped the boat at a special place on Sagandaga Lake where he said Keith had caught a large carp. I then asked Larry and Jean to join me on the boat’s stern and we each took turns dropping the last of the ashes I’d brought into the clear cool waters of this beautiful Adirondack lake. As we dropped the last of them into the water, we each said a prayer for Keith’s peace in the afterlife, the existence you’ve taken on in that other universe that we know you’re watching us from. The ashes swirled into the shape of a large fish and then just as quickly dispersed.

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The sun’s rays pour through storm clouds onto the receding tides of Fiji at the Beachouse. August 2013.

Back to the South Pacific
A few weeks later, on what would have been Keith’s 55th birthday, my daughters, son-in-law and I began the long journey to Fiji. Unfortunately, a weather delay out of Detroit had a domino effect and we missed our flight in LA that would take us to Fiji. With every hotel within shuttle distance of LAX filled due to the other stranded travelers, we ended up camping in the international terminal for 24 hours until the next flight to Fiji would leave at 11:30 pm Sunday. We finally arrived, due to the international dateline, before dawn on Tuesday, 7/30, Sarah and Mark’s 2nd wedding anniversary. It would take us three days to recover from our travels but there are worse things than being stuck on the beautiful beaches of Fiji, surrounded by friendly faces.

When on my second voyage out to sea to snorkel about the reef at high tide, I found myself in rapture like a small child laughing at the playfulness of joyous discovery at each colorful fish, sea anemone, or seashell I picked up. It went on like this for what seemed like an hour, even once Sarah and Mark joined us, him on the kayak and Sarah in the water snorkeling along with Stassia and myself.

At one point I found myself alone, looking around there was a panoramic view of dozens of different types of colorful fish, from moorish idols to Picasso trigger, from orange and black clownfish to black or blue damsel fish, lemonpeel angelfish skirted in and about the other unnamed colorful players to our dance. Coral heads filled the sandy area with waves of green seaweed, to colorful Christmas tree coral worms as the waves slowly caressed us to the gentle beat of the sea.

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I was transported back to a similar moment in Fiji during a dive with Keith. I remember holding onto the top of a coral bommie, schools of colorful fish moved in an harmonic dance all around me, in sync with the waves that pulsed through and around our bodies. As I remembered this absolutely magical time back then, my chest began to tighten. Keith, are you here? I remember now asking myself this. You could swim this type of natural beauty any time you want now, Keith. But is that why we are here? To remember and remind ourselves of that magical time? Is this how we are to honor you here in Fiji?

I had to fight back to tears that began to choke me. And just as I could no longer hold them back, I heard sounds of joyful outcry through the water and above the surface. Sarah and Stassia were happily playing in their discovery of some new fish, a group of clowns in an anemone, a big puffer fish under some staghorn coral, a colorful nudibranch that was hiding in the shadows… You taught them that, this joy of discovery of the undersea world, to respect it, yet relish it with a whole heart.

I swallowed back the tears that threatened to overtake me. Turning towards the laughing mermaids, our daughters now nearly 24 and 27 years old, I joined them in taking joy of their new discoveries.

One of our last days in Fiji, we made our way into the highlands of Viti Levu in order to kayak on the Navua River with a brief stop at one of the many beautiful waterfalls. Our little band of just four travelers and our Fijian guide were mostly alone as we made our way downstream. The occasional motorized longboat passed us heading upriver, sometimes trying to splash us (if it was filled with locals), sometimes throwing a big wake (if filled with tourists), but always with big shouts of “Bula!” Otherwise our trip was beautifully and blissfully quiet as we passed through the deep jungle canyon, marked by the occasional group of cattle clinging to a flatter area to graze. The rush of the occasional rapids would make our hearts beat faster. But then as we passed into calmer waters, the chatter of bird calls could be heard from deep in the jungle, one I mistakenly took for a dog barking until I’d heard it a few more times down river. Possibly an owl, instead.

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One of the many smaller streams feeding into the upper Navua River.

I knew this was a place for contemplation. So it didn’t surprise me, only pleased me more, to see the occasional heron fly by or sit on a rocky perch on the river’s edge. Keith’s animus, I thought, watching us make our way, being sure we did so safely. “Hi Keith” I would think to myself every time I saw one of these beautiful birds. They only seemed to ever showed themselves one at a time. So it was easy to believe that the white heron, then the white-faced blue heron, then the dark blue heron were all Keith… watching over his family and guiding us safely through our voyage.

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Earlier in our Fiji trip, Andrew, Keith’s best buddy in Fiji, made arrangements for four salusalu to be made. These are Fijian-style flower leis. Traditionally, they would be dropped into the water behind a sailing ship when newly launched. The same practice would be used to send Keith on his journey by putting more of his ashes into the channel when the outgoing tide would take them out to sea at sunset. Sarah, Stassia, Mark and I each poured some of the ashes into the sea followed by a flower salusalu, the sun setting quickly on the horizon as the waves broke loudly on either side of the channel. Andrew held the boat steady and then I asked him to do the final honors for the evening which he did. With all my children present during this time as the boat rocked us on the horizon of the South Pacific seas, the flowers drifting out to sea with his ashes in tow, it seemed so much more meaningful than any other time before or since. The next place we took Keith’s ashes was to Sulua Place in Pacific Harbour, where Keith had built our South Pacific home. Once again securing permission after finding out Sarah’s former teacher was house-sitting OUR old house, we went to the edge of the sea wall and, with a few blossoms of bougainvillea, we dropped the rest of the ashes I’d brought to Fiji into the ocean-fed lake.

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Very early on August 11th, as the plane descended into Detroit, it occurs to me that the act of visiting Fiji again, especially with the kids, and reconnecting with old friends serves a greater purpose. It served to remind me, to reassure me, that my life with Keith – if it were a dream – is one from a shared dreamscape, shared and made real by all those who knew him and remembered his stories. For it makes life – my past life with Keith, and any future we create anew – more than just the dream of songs, those songs that I played on the iPad a year ago, the ones that still bring tears to my eyes now.

Just before dropping through the clouds to the airport below, we saw the last of the streaks from the Perseus meteor shower outside our window, a reminder that all things are connected here between heaven and on earth.

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The last of Summer’s days

Over the next two weeks, with the marking of what would have been our 31st wedding anniversary, and then the looming milestones of when hospice would bring his hospital bed, I faced more emotional swings, especially as news reports celebrated the Blue Moon for the summer season. Keith died on the weekend of a Blue Moon, defined last year as the second full moon in a month, but more accurately was the fourth full moon of a three-month season as was the case this year. As the evening wore on and I settled in for bed, I felt my mood change. Sleep eluded me and my back throbbed angrily from my earlier weeding rampage in both the front and back gardens. I lay there in the dark, thinking back to a year before and what we were facing in Keith’s final days, still not knowing how long he had left.

Eventually, I just couldn’t stand it and decided to read through my diary entries from last summer. I relived each moment described in those pages yet with the fog of time cushioning the sting of pain. By around 2:30 am, my anxieties began to overwhelm me. I wanted to SEE the blue moon. I needed to see it. But the ambient light in my bedroom was too much. I began unplugging powerstrips that had extra lights. I tried to bend my body over the glass table by the window so I could see the moon that hung very tightly to the roofline of the house at that angle. Last year my bed sat under that window and I could just look straight up from my pillow as the light of the moon pressed sharp shadows of tree branches across the bed. But this year my bed sits on another wall and the window hangs over a glass table with books, photos, incense and a candle I’ve burned occasionally for Keith. Eventually, I climbed across the bed and craned my neck. I needed to try and feel the light of the blue moon, even as I cried myself to sleep.

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Dream, 8/30/13

I was on a boat. On this boat, the drawer of my dresser was overfilled and there was a pair of black velvet flats with bows that were getting squished. Music played on the stereo, like my iHome that holds the iPod here.

I was getting dressed but would get interrupted by different people. In one case someone who was dressed in a black chefs jacket says to me that I’d better be nicer to someone, that I shouldn’t be so hard on him. I replied that it was guidance and tough love, that he needed it in order to achieve what he wanted.

I remember others coming in but can’t recall the conversations. Only that I was in the process of dressing.

As I tried to leave the sailboat, the exit was actually a long curved wooden slide, polished smooth and beautifully crafted, like something Keith would have made. I don’t think I went down the slide.

I recall then seeing someone, a man who had crazy curly hair. He smiled gently at me. I turned back towards the dressing room to adjust the music. I found that the remote control was missing. All I could do was change the tune by selecting something different on the iPod. But to turn it off, I would need to do something more drastic like pull the plug. I sat the iPod down after selecting a different song, tried to shut the dresser drawer, but the black velvet shoes were getting crushed.

My analysis:
The curly-haired man was my friend, the person I needed to be nicer to. The slide was a passage towards the spiritual world… to exit would have meant death for me, an exit from this life. The black velvet shoes are the shreds of mourning and grief that swell the corners of my life, beautiful but sad… They need to be made to fit into the package of my past… not left to overwhelm my current life or my future. The music is the music of life. We cannot turn it off without dying (i.e. pulling the plug). We can only change the song.

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And finally, the anniversary

It was September 1st, 2013… The song that Keith and Sarah danced to at his daughter’s wedding to Mark had just come on the iPod playing on my iHome as I wrote in my diary on this first anniversary. My friend was out in the workshop after having mowed the lawn, trimmed the edges, raked the front yard of its leaves. Sarah, Mark and Stassia would later be coming over in anticipation of dinner, and an evening by the bonfire, toasting their dad.

That evening we would burn the masi bow that we’d tied to the front yard tree last year, the day after Keith left us. And we would throw the last of the copal that I’d brought from Mexico, a gift from Tlakaelel back in 2006. My friend was there too, but quietly… out of respect for this family event. It was still so surreal to me… a word I shared with Keith’s sister Barb just the other day, on her birthday – the same as my friend’s. Keith’s father had died in early June, just 9 months after Keith. She shared news of the closing on his house in Phoenix, the estate sale while we were still in Fiji, how quickly it had all happened… yet all in the same year as Keith’s death.

It felt surreal that I sat here writing in my diary 365 days later, a full year of days, and my friend now sits beside me, ready with a warm and unconditional hug. I’ve needed a lot of those lately. It’s been a surreal experience, this last year or more, beginning with … what… Stassia’s graduation and Keith’s still not getting over his “flu” after too many weeks and months? my flying back from Russia after news of “metastatic liver disease”? the nightmare weeks and months that followed, so few that we never felt we had a chance to even begin to catch up to the disease that had raced through his thin ravaged body.

It’s surreal that life went marching on afterwards… surreal that Keith is not here… YOU are not here, Keith. At least not on this side of the spiritual realm. I wish you well, Keith. I know I can feel your spiritual presence… stronger some times than others. I need to keep going on, to empty the drawers of grief, to change the tune on my iPod, and be more open and kinder to the gentle friend who has stepped forward to help me through it all. Only time will tell. Time… heals eventually.

This morning I reread the card that sits by the candle I light occasionally for Keith. “Regard all dharmas as but dreams.”

Life is but a dream…

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Perry Road workshop after a spontaneous sleigh ride down the hill, a week ago. The sun was quickly melting a new fallen snow.
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It was fortuitous that the workmen would come today (Friday, 3/1/13), the six-month anniversary of Keith’s passing. They moved up their starting day to remodel the master bathroom at home. The room had been a running joke in our lives, but also a sore spot Keith would ignore in favor of taking on other projects, commitments, or just going for a ride on the motorcycles. I admit that I enabled this. I much preferred to ignore it myself and go have fun, then to fight over it= and cause unrest in the house.

Yet there it was, in all it’s ugliness, the focus of which was the freezing shower with the cracked tiles, the shower door falling off its hinges, the moldy ceilings, etc. When I had packed up many of Keith’s things, I came across a drawing and notes he had made for remodeling this room. My own drawings were not too far off. The difference was the custom cabinet which I could not supply. And so other solutions would be needed. In the end, though, I was forced to make a last minute change, bumping the wall out into the bedroom about a foot so that the cabinet I ordered wouldn’t block the doorway. This was the part Keith would have customized, creating a slant to ease the entry while still allowing for the larger cabinet. But mine was 20 inches deep, and the wall next to the door was only 16. I could not put it tucked into the corner as planned. And I couldn’t move it over due to the toilet space needed. So the wall would be moved.

I listened as the guys smashed and cut away old fixtures and floors, while I worked on a paper in the cozy little cocoon I made of my bedroom behind plastic sheeting hanging from the ceiling.

It was exciting to start this project. Nearly 16 years after moving to Michigan, and about 15 years after moving into this house, that bathroom was always the target of my disgust. Cracked tiles, continuously moldy grout, shivering cold, a tiny vanity, all added up to a room that I just wanted to smash. It became a running joke (and point of terror) that when the kids misbehaved, they’d be threatened with scrubbing the shower tile in mom and dad’s bathroom.

A need to break something…
So when the guys showed up this morning and started the demolition, I asked them to give me a chance to smash something, just one thing to get out my frustration. I took aim at the soap dish, broken for the last three years where the mold had seeped into the crack and degraded the already cracked and ugly ceramic dish now hanging jagged out of the wall.

SMACK!! and crash, I swung the hammer at it with my eyes closed tight, the guys behind me cackling at the sound of the pieces hitting the tile floor of the shower. I was anything but satisfied. I was angry. Angry that it took 15 years and the death of my husband to get to this point. Angry that I was doing this on the 6 month anniversary of his passing. Angry at Keith for abandoning me. Angry at myself for feeling guilty about wanting the embrace of another man in Keith’s absence. Just plain angry at the world.

I handed the hammer back to Joe who shook his head still laughing at my overly dramatic swing, and so I managed to summon a smile in return. My last big assignment for a doctoral course was calling me. So I slipped through the plastic sheathing that hung between the work area and the rest of my bedroom, climbed back onto my bed where my iPad and reading sat waiting for my attention.

Counting down to the other side
Later that evening, after the workmen left, i let out a sob. Pent up emotion that needed a release. It lasted only a moment and then I went back to my work. But as the hour drew near, I had to stop and write in my diary… a countdown of sorts:

The countdown weighs heavily on my heart, 55 minutes, 54, 53, 52, 51… Keith died at 7:55 pm on September 1st, exactly 6 months earlier. Just a few days ago, visible in the pre-storm night sky, the nearly full moon loomed overhead, stars sparkling and taunting me in a bittersweet reminder of the date to come. But tonight, this last hour has been painful.

The other part of the remodel project ws to replace the vanity in the kids bathroom. Keith had made it and painted it with analine dyes a scene of seaweed and deep blue waters. Unfortunately, he hadn’t accounted for the doorframe trim and the kids were never able to pull the drawers out as far as intended on one side. I feared that any new owner of this house would simply pull the cabinet out and toss it. So I ordered an inexpensive white cabinet the same size and had the guys swap it out.

From my diary…

It’s 7:45 pm. 10 minutes before that moment when we knew Keith made his last breath… 6 months ago. Stassia is busy texting me about how much money she’s losing from her free trip to Florida. I try and restrain my impatience and simply remind her that it will all work out, I had planned to help her out anyway, knowing there would be some impact on her missing work. She has already been stressed due to a cutback of hours so I try not to feed her anxieties. I have enough of my own.

Four minutes now. I’m beginning to feel a little better. Time is passing quickly and I focus on the passage of this sad milestone which will put me on the other side of the hump between the first half of a year after he died, and the second half when looking forward should become more common than looking back.

I moved a photo I have of Keith that sat on my side of the bed. It was the one where he has that silly smirk on his face. But more often recently, that smirk has looked more like disapproval, and even hurt. I couldn’t face it any longer, at least not every moment when I sat on my side of the bed we used to share. I moved it over to “his” former side, the side where I keep my powder puff from crabtree and evelyn, and my button jar, the side where I moved my flickering lamp when I swapped it for his working lamp.

It’s 7:55 pm now. My heart sinks a bit. I have already shed some tears in exasperation. But the moment has passed. It’s time to move forward. I love you Keith. I will always love you. But I cannot live with the pain of your loss. I must live with the hope for a new future. Otherwise, my grief will consume me, a feeling I have occasionally faced in a depressive moment, ready to give up on going forward.

Moving forward…
Yes, the moment has passed, an inauspicious milestone. Six months to the minute since Keith died. I breathed deeply and tried to go back to my work, knowing I am not alone on this road. And that there are angels – or ghosts – who watch over me, too. My dreams, and those of a good friend, make that clear.

So now looking forward, I thank goodness for many things. For the friendships I have, my children who remind me why I cannot sink into despair. And the touchstone of a good counselor. And for a fulfilling career surrounded by interesting, supportive people…

And oddly enough, more recently, I am also thankful that, even if it does not grow into anything further (or I refuse to let it), there’s a little guy up north who is willing to talk to me, listens to my tears, and even then still calls me cutie, and offers me a virtual hug. We have never met, but I have grown more fond of him. Maybe it’s because at this point it is still fantasy. But, at the moment, I can live with that.
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And the demolition begins, at home on Jerome Lane.

20121109-042017.jpgPhoto above: Etched into freshly poured concrete at the Perry Rd project – “In memory of Keith E. Fulmer, 9/1/12, The Dream lives on in us.”

Time marches on and I find the days go well as long as I keep busy. The election this week set me off on a cycle of late nights once again, and sleep eludes me until I can no longer hold my eyelids open. But, while I await the sandman’s arrival, I see Keith’s smile in the photo across from me, a little smirk that made dimples in his cheeks, a twinkle in his eyes that spoke a bit of mischief, a challenge. Of course these were mostly photos taken by others. For when I was the photographer, Keith would often challenge me with a bit more rebellion, and sometimes a crude gesture, all in fun. Or, I would have to work a bit harder to capture those moments when he had his guard down, was a bit more contemplative, unaffected by the camera. It made my role as family photographer a little more challenging, working around the self-consciousness that was sometimes awkwardly expressed.

My role as photographer shifted a little when we traveled, even more so when I traveled alone. As much as Keith traveled in the South Pacific – living in Fiji, working on the dive boat, or flying to Tonga or Vanuatu – he was still much more of a homebody. When we moved back stateside to Michigan, he would be willing to drive long distances, though often complained of pain in his shoulders from doing so. But as weird as it may sound from a guy who had his pilot’s license, he hated flying commercially. Can’t say as I blamed him. If I could avoid it, I would. But I had yet to find a way to beam myself to a conference destination. More than a few times Keith and the kids would join me when I went to a conference, or we would join Keith for one of his symposium destinations. It was great fun, though a little stressful at times. And I admit a little envy for having to miss out on the family fun while I sat inside at a conference event. Still, we managed to work in some quality time together when we drove to these places, using it as an opportunity to “see America”.

But during the times when either of us would travel alone, we would always come back with pictures to share with the other. In my case, I was fairly prolific looking at these photos as an opportunity to add to my photo library of memories and resources for future art projects.

When Keith’s diagnosis was nearly confirmed in early June this year, we sat down on the big leather sofa in the living room and, page by page, photo by photo, we revisited our lives together. It was during those early reminiscences that Keith expressed for the first time his thoughts about his life. The odds were not good, he knew that. Yet he was not giving up. But he was coming to terms with the reality of his foreshortened future.

So, as he looked back through those albums filled with the iconic images that defined our lives, I heard him say it. “I have no regrets. I have no regrets for how I have lived my life.” That didn’t negate that he was deeply saddened, depressed, or even angry at times about this turn of events. But it became the anthem upon which the rest of the family would rally. No regrets. Seqa ni rarawa.

We had often talked about certain travels we wanted to do together. St. Petersburg, Russia was one of those places we had agreed would be a place we wanted to see. When the possibility came about, and an invitation for a Fulbright to Ekaterinburg, Russia came in September 2011, my mouth dropped. Here was our chance to do this. But it soon became clear that there would be too many obstacles to overcome to have us both travel at this time. Keith’s work making custom furniture was growing, and he had several shows the following May (2012) and too many other things to prepare for. Besides, spending three weeks in Ekaterinburg while I was teaching, before heading to St. Petersburg, just seemed too daunting for Keith to overcome. So the plan evolved to where I would go alone, become acquainted with travel in Russia, even visit St. Petersburg on my own, and then in the future, we would go back there together.

I never made it to St. Petersburg, canceling that part of the trip when Keith’s illness turned into something more ominous than the flu we thought he couldn’t shake. But this summer I continued to take photos often to share with Keith the progress on Perry Road, or to show him something I needed to ask him about, or a special moment that I wanted to share with him. The photos continued to be part of the archive of our lives together.

But as the summer faded, and the progression of Keith’s cancer moved relentlessly towards its ultimate end, I began to question myself. Eleven days before Keith passed away, I contemplated this issue in my diary.

Diary Question….
8/21/12, 4:47 am

Who will the photos be for now?

Over the years, when Keith was unable (or unwilling) to travel, especially if the flights were long, I would take many photos to share with him. Before, they were film-based and thus I would get them hurriedly developed and printed upon my return. More recently, I used a blog and photos – with their basic descriptions – uploaded for him to see almost in real time.

I wonder, though, how much energy he had to look when I kept a blog up with photos on my recent Fulbright to Russia.

Now I wonder as I travel … who are the photos really for? My guess….the child yet unborn.

Why do I continue to take photos of the Perry Road project’s progress? Is it just to document a process of renovation?

Who are they for? Are they to fulfill some personal need to continue to chronicle what was begun before Keith died?

Do I continue to photograph it and the nature around it out of some sort of habit I cannot break?

That is what led me to write that question in my diary. Who are the photos for? What purpose do they serve?

I contemplate some potential answers…

Icons of life, artifacts of an experience, an effort to freeze time, or hold a moment completely still for perpetuity. Do they sadden me when I see them? Sometimes. For when I look at them, I can feel myself being transported to that moment, or an illusive memory of that moment in time, seen from the context of decades past.

They are the stories that should continue to be told to the next generation. They are part of my personal history, my own story, Keith’s stories. They speak volumes, without the details of a formal narrative. And since Keith is not here to tell his stories, then they will have to speak more for him, too. They will be part of a family’s history, told around the campfires of future cool autumn nights.

Here is another entry I found where I was contemplating the meaning of all those photos gathering on the shelf:

on a shelf…

…the photos all fit on the shelf down in the basement. Albums representing an entire family’s history fit under the coffee table. A few select photos, framed, hang on the walls, icons of a family life.

How do these tell our story? Is it how we wish to build our history? who will retell it to the next generation? or will the stories be lost?

The photos, all boxed up and mostly labeled, fit on a shelf in the basement, to become archaeological relics of a lifetime gone by. How will the new story be told? What new roads will we travel? and who will travel them? Who will join us? and who will leave us?

The photos, selected and still loose, sit stuffed into an album yet to be created, an album that captures snapshot moments of a life gone by, memories still fresh as the morning dew, 34 years in the making… a worn-out coffee table shelf holds a family’s history, ready to be retold during quiet moments of reflection, or when the urge to cry overcomes me and I desire to re-enter memories of a life gone by, a life well-lived, well-built of love, creativity, beauty, caring, family…

What life shall I build now?

— mjf, 9/19/12

Photo below: Large fungi grow off an old tree stump behind the workshop at Perry Road. I felt like Alice coming across this giant, waiting for a pipe-smoking caterpiller to show up.

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[Note to reader: I wrote this to someone who shared feelings of guilt about not being there often enough during their best friend’s dying days. I hope it provides some relief to others who share the same feelings. – mjf]

Dear friend,

I wanted to write to you to express some thoughts about how you may be feeling about your loss, your dearest friend’s death.

You mentioned that when you saw your friend’s husband at the funeral that he came to you with a big hug saying how you were such a good friend to her. But you felt you didn’t seem to deserve that, in part because you seemed to feel guilty for not spending much time in person with her in the last year.

But I’m here to tell you that your friendship was felt and truly appreciated. This is based on my own experience, especially with some of my and Keith’s closest friends, ones who could not be there often in those three months.

There is a difference between friends who impose that friendship upon the other, and those – like you were to your friend – whose friendship was strong without imposition, regardless of the physical distance that separated you. Those small gifts you sent, the emails to her daughter or her husband, each and every one of those small moments were huge. For they carried with them the strength of years of sharing and love, support and understanding. They carried with them a gentleness that acknowledged that sometimes space is good, and emotional support is more than for the dying, it is for those who suffer the waiting.

I’m sure your friend – during any coherent moments in her last weeks and days – recognized that. I’m sure she could see it in the faces of her loved ones, that they were receiving the love of dear friends like you who helped buoy them from behind so they could face what was ahead for them.

Be thankful for the gift of friendship and love you shared with your dear friend. And continue to support her children and husband with the same gentle touch that you shared before. Let them know your pain, too. For it will remind them that the grief is not theirs alone, and the journey to healing is one borne with others who knew your friend in different ways. It is an awakening journey that allows them to see their loved one in a different light. It is a journey that will be different for each of you, but one that will be beautiful and painful nonetheless.

Be thankful knowing that your small touches even from a distance were probably more appreciated than all the impositions of personal space that those geographically closer may have been unable to avoid. As harsh as it may seem, there are times during this summer’s dying process that I wished others would have let us be. Email was so much easier… I could read it on my own time, cry a little when it touched a nerve, and close the letter. But a phone call was harder to ignore, though still possible. Text messages were easier. They didn’t require the power of speech, something that often eluded me for my voice would begin cracking from the pain of retelling some worry. But the occasional email, or the simple voicemail saying “I am thinking of you and I don’t expect you to call me back” was often enough. As harsh as it sounds, having someone there all the time was sometimes more stressful than being left alone. It is hard to say, really, how much is enough. I’m sure it’s different for others. But my little family found that the distraction of the doorbell, or the pressure of wanting to find something for another to do because you didn’t want them to feel their offer of help was unappreciated… it sometimes added more pressure to a stressed family rather than help relieve any.

So I share this thought with you, that you’ll lift any veils of guilt from your conscience about not being there more, especially in the end. They knew you were thinking of them. They knew they could call on you. And they knew you loved and cared for them deeply, and would share in their pain of losing someone. And just knowing how much you meant to your friend, and how you reached out with those simple and kind gestures, ones that were unimposing but probably always arriving at just the right time, those helped them ride out the last waves of an impossible storm. You were one of those precious life-rafts they could reach out to hold onto when the time came. And it did. That hug at the funeral said it all.

With warmest wishes and sincerity,
Mara

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