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.

 

Atlas Mill Pond, this tree hugs the edge of the hillside yet thrives in its strength.


Oh dear Keith, I think of you all the time… every… single… day… I ask your advice; I feel supported, if even from afar; I smile at your photo every day. I love you still, and always, for you are a major reason I am who I am today… because of the life we had together. And together, we created two beautiful children… and together…you are in the DNA of our future grandchildren. I will see in them your eyes, your smile, your dimples….even as I look at our daughters and hear your laugh.

But time has had its say, and I find that my identity has evolved. I realized this in sharp focus today, even as I had begun to feel it evolve over the past six months or more.

 

The Heron, usually the Great Blue but sometimes the White, has served as Keith’s animus to me, a reminder of his presence in winged flight. Here they are seen on the Atlas Mill Pond as I try and refocus on the new future life has planned for me.

 
When you first passed away, when you first left me and the girls, left this earth to go to the other side…the spirit world, I could see myself in only one way…lost. I was physically and emotionally in pain from losing you. My world had crumbled, and with it my entire identity had shifted… as half of a partnership that was entirely dependent upon being connected to you. Without you, I felt I was only a shadow of who I was. Because I was a widow…someone who – by definition – had lost a great love.

I still am that person who lost a great love. But I am no longer feeling like the crumbled broken woman whose wounded heart was freshly ripped open by loss. I feel stronger, capable of managing the stress of difficult situations, able to accomplish challenges with confidence rather than apology. I feel strong enough to help others who are facing difficulty, strong enough to stand up for what I know are the right steps to take in my own life in challenging situations. And strong enough to trust when the future is uncertain.

I feel strong enough to help others who are facing difficulty, strong enough to stand up for what I know are the right steps to take in my own life in challenging situations. And strong enough to trust when the future is uncertain.

I am now in a new and loving partnership, looking forward to celebrating our first wedding anniversary with Steven in two months. He is a wonderful and loving partner with whom I can see my life in balance. He provides the kindness I need to come home to, the smile in the morning, a sweet and loving hug in the evening, a supportive companion who makes me laugh when I need to stop taking myself too seriously, and a lover who calls me cutie when I need to feel pretty. And it seems that I have a role to play in his life, trusting in his talents, and supportive of his interests. I find that I can help him learn to move beyond anger and frustration, especially when these feelings seem to overwhelm him, often when accompanied by feelings of helplessness in difficult situations.

Sometimes, I think our roles make up an emotional partnership where I am the one who offers the stable view of life’s challenges and dreams and Steven offers the practical implementation of those dreams. And when conflict and distress threaten to undermine them, Steven’s frustration is balanced by my calmer pragmatism. Our life is built upon the comforting partnership of building our shared dreams. Without him, many of the dreams we share could not see practical fruition. And without me, the dreams we share might not see the supportive belief in their potential of reality.

 

September 27th this year marked the appearance of the Super Moon, a Blood Moon made red by a Full Lunar Eclipse. It created an important counter to the Blue Moon that occurred just a day before Keith passed. The universe speaks volumes while we ponder our own significance.

 
My identity has evolved. I am no longer the broken widow, a survivor of great loss who feels the hollowness and pain of your death, Keith. I know that you are still with me, and I depend upon your guidance from beyond this world. But I find that my heart is larger now than it was before. The hollowness has been filled by the recognition of the great love we shared during our long and loving marriage, a love that still grows in our children and future grandchildren that I will help nurture. My heart has grown larger to encompass a sweet love of a new partner who has joined me in this next and vital stage of my life. And the pain of your absence, Keith, has been replaced by an inner strength and mindfulness that allows me to serve others in a supportive, caring, and unconditional manner, understanding that listening goes beyond hearing the specific words said, to the words not spoken.

My identity has evolved into a woman who can meet life with an elegant strength. I am strong. I am resilient. I am loved. I do love. I do serve. And this is why I am here.

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Detail from an artist’s book created for a presentation on my growth through my doctoral studies.

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Well… That’s done! Phew! I have successfully defended my dissertation and can now officially be called Doctor Fulmer. It’s been a long and winding road and I can unequivocally say I am not who I was when I began.

And this is not where I thought I would be when I finished. But here, indeed, is where I am…

Tomorrow will bring a new challenge, something to change the course of my life… Sometimes it’s just a small thing… Or just a word or two. “Do you want to move in with me?”

You never know, really, how your life will shift ever so imperceptibly in a different direction. Not every change is brought on by the seismic shift of death. Sometimes… just sometimes…it is just one small thing you never really believed you would hear or say.

And then it’s over. And you’re sitting there thinking: “hmmm. That’s it. What next?”

In a way, life has been in a simultaneous holding pattern while I finished this doctoral degree, while at the same time rushing forward towards a future that was not entirely in my original plan.

Well, it’s not like I don’t have other things to do… Or want to do. Make art. Write more. Build a house. Move up in my career so I can put my skills to the test.

In a way, life has been in a simultaneous holding pattern while I finished this doctoral degree, while at the same time rushing forward towards a future that was not entirely in my original plan.

Let me explain. For the reader who is unfamiliar with my story, I offer a brief synopsis. Life was good. Really good. Daughter #1 had just gotten married to a wonderful man. Daughter #2 was graduating from university and had two jobs already lined up. I had finished my first year in a doctoral program while working full-time in a job I love. I had been awarded a short-term Fulbright to Russia. My husband of nearly 30 years and I had purchased our dream property where he could have his workshop, family art studios, gallery, and even a future new home. Life was good.

And then it wasn’t. (Read more about it In earlier posts going back to September 2012.) He had lost weight, been fighting a “cold” and feeling weaker. A month of tests led to a diagnosis of Stage 4 cancer, unknown primary (likely pancreatic), prognosis extremely poor. From diagnosis to death – less than 3 months. He made it just past his 54th birthday and our 30th anniversary. My life felt like it had completely crumbled.

Promises were made, though. He made me promise: Don’t sell the property, but finish it for the family to use for their studios as planned, and for my own uses. Finish the doctorate. He really wanted me to do that. He was upset that I had dropped out that summer to care for him. But, really, who can concentrate on Quantitative Research Methods while managing the care and emotional roller coaster of dealing with your dying spouse? But…then he was gone and I had to deal with the emotional crater that is grief.

First, I finished the renovations on the gallery house which contained daughter #1’s photo studio upstairs. Then a new fence, and retaining wall went in. The farmhouse is slowly being dismantled and parts saved for salvage. Steven, my companion in all of this, has tirelessly put his heart and soul into the work, along with any college students I can hire to assist.

Most recently, the large 4000 sq. ft. workshop space has been slated for renovations. Stacks of the 71 new windows fill the crowded shop in anticipation of being installed late fall, along with new insulation, siding, and steel roof. The emerging economy has slowed progress as the contractor I have worked with, an old friend of my late husband’s, is backed up from other work. But progress inches along and I have no doubt that it will all be done before Spring.

While all this was happening, I caught up. I finished all of my coursework, including the Quantitative Research course which I did by independent study with the original and very understanding instructor. I did all of this with a 4.0 GPA. At the commencement and hooding ceremony held last May, I was awarded the Faculty’s Distinguished Scholar-Practitioner Award for my thoughtful approach to the various studies, sometimes challenging my classmates to look at things from a different perspective.

And then, only five months after commencement, I have completed the dissertation defense, receiving high praise for intellectual standards for my work.

The meaning of pursuing these goals had changed. My life’s partner was gone… And my life had been designed for a partner.

I tell you all this not out of boastfulness. I tell you this because it was done in order to honor my promise. For if I had not made that promise, there were many times when it would have been easier to just walk away from it all. The meaning of pursuing these goals had changed. My life’s partner was gone… And my life had been designed for a partner. My new companion, however, was not going to let me give up on those promises.

And so how does one do it? It began with a simple gesture of sharing… Opening up one’s vulnerabilities and accepting that you might get hurt… But that you’d already felt the worst of pain. So what could it hurt if you shared a little of yourself with someone new who seemed to care and shared some vulnerabilities of his own?

It’s been a year and a half since I met Steven and he’s been the kindest and gentlest person that the spirits could have sent across my path at a time when his kind of personality was just what I needed. And since then, I have grown to respect and admire this self-described hillbilly for his creativity, innovation, and practical smarts. He is a good balance to my over-intellectualism. He wears his heart on his sleeve which reminds me to recognize my own capability to love someone again. And frankly, he’s always there with a good hug…just when I need it.

So I come back to where I began this brief story. I finished my doctoral studies. I am now Dr. Fulmer. I began as the wife of a loving husband of 30 years. I survived through my studies as a widow. I am now looking forward to building a new life with a new partner in a new home on the dream property from before.

The shape of the dream has shifted…just a little… I face a new challenge shared by many in the “sandwich generation” who are looking at caring for aging parents…mine who will join me in this new home I’ve designed. And I feel confident that, with Steven as my companion on this new journey, we will be able to meet whatever life’s challenges lay ahead. But I’m not naive. I know that, without warning, the road can shift beneath your feet. And life will never be the same again. You can’t live your life looking only in the rear view mirror as you try and move forward. And you can’t live your life paralyzed by the fear of a shifting road.

All you can do is take this long and winding path of life one step at a time. Look ahead to the dreams you continue to create. Scan side to side to see who is coming with you. And occasionally glance back to remind you how far you’ve come. Only in this way can you live your life moving forward.

Besides, I’m all good with the ghosts of those who still travel these roads with me around here.

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A good omen. Swans are visible through the branches along the pond’s edge as the sun sets behind my property where I’ll be building a new home.

The sign said:

Please don’t forget I love you.

It stopped me cold. I was allowing myself a short distraction while eating a late lunch, scrolling through one of my favorite pop-up shops online. In this section were graphic wall signs of sayings about love. But this sign wasn’t among those offered for sale. It was in the preview, catching my attention as I flipped through the main page. I flipped the page back up and read it again.

Please don’t forget I love you.

No, I said out loud, alone in the room. No, I won’t forget. I love you, too. But why don’t you visit me in my dreams? At least that way the days won’t seem quite so lonely.

I’ve kept busy the week since returning from my trip to Grand Rapids. There’s no doubt that I could work 24/7 and still not get it all done. My flu mostly subsided, has left a residual cough. And I admit a moment of self-indulgent pity when I awoke a few mornings soaked in sweat, reminded of how badly Keith’s sweats first hinted at the cancer to come. Well, I thought, if I have what he had, then at least we’ll be together. Then I remind myself that it really is just the flu and shame myself for indulging in this little mental melodrama.

Focus has been in short supply. It feels like I’m missing a limb, like I’m out of balance. So I find it easy to fall into distraction. Part of the issue may be technology. It’s too easy to access. So text messages come often, emails, too. And a little online shopping, though that has been reduced considerably. Retail therapy has proven to backfire when the bill comes.

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My new sleigh at Perry Road. The hill in the backyard is much steeper than this photo implies and this sled goes VERY fast! I made the run three times, each time cackling aloud like a crazy woman. But it was a blast, a cathartic release, and good exercise to boot. Anyone watching me doing this alone, however, would have thought me mad. So when I tired a bit and started taking it a bit close to some small trees, I decided it was time to give it a rest. But now that the snow has returned again after the crazy thunderstorms earlier this week, I’ll have to give it another run!
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Making Paper Memories

I made paper last Saturday at a workshop in Ann Arbor. It was a therapeutic experience to finally work with my hands again, being creative in a more tactile way. I brought rose petals from several arrangements we’d received last summer while Keith was ill. The last batch, however, was from his funeral, the only two live flower arrangements there. In Keith’s obituary, we indicated “in lieu of cut flowers, donations could be made to…” And then we indicated either the American Cancer Society or the Keith E. Fulmer Memorial Art & Design Scholarship Fund at Mott Community College.

I admit feeling an initial disappointment when first arriving at the funeral home to see Keith with only a few arrangements nearby. But we soon filled the spaces around him with photos and his own woodturned art.

Over the summer, Keith became distressed by the cut flowers that arrived occasionally, sometimes meant to honor our anniversary, or simply to cheer him, or me. But instead, as they withered away and died, they were a foreshadowing reminder of what was to come for Keith. And so when it came time for his funeral, we chose to request the charitable donations. But as I first felt pangs of disappointment for not seeing an abundance of flowers in the room, I realized that maybe that’s because the flowers were meant to support the living. Still, as I saw them wither and die over the weeks that followed, I was reminded again of Keith’s comments.

So I had saved the rosebuds from each time flowers would arrive, and let them dry by the kitchen window. I couldn’t bring myself to throw them away, so clearly representative they were of a time with Keith. I brought some of these with me to weave into the paper pulp, and by the end of the day, I almost couldn’t bring myself to stop. A little pulp remained with the rose petals still flecked throughout. I asked the instructor if I could keep it and she, of course, said yes.

As I was getting ready to leave, she asked about how Keith had died. She said she’d never realized that anger was a natural part of grieving and that she’d felt it intensely after her father had died. I told her I, too, had felt anger throughout the grieving process. She was surprised by the intensity of her own emotions. For me, I’m not always sure who I’m angry at…. the fates for bringing Keith’s illness, or at Keith for leaving me, or at myself for indulging in this self-pity. But while anger is indeed part of grief, so is the act of letting go.

So as I told the story of Keith and the illness that took him away from me, I realized it was one the first time in a long time that I could share this story without choking up, and without tears pressing against my eyes. Instead I was able to calmly tell the story, and even smile a little bit at the memories and how my life with Keith was a good one. And for that I am grateful.

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New Dream – Keith visits.
1/29/13, 8:30 am

The conversation was so real that it seemed incomprehensible that it was just a dream. Keith and I were standing near a doorway, resembling the sliding door in our home that leads to the backyard. He picked up a clipboard from the dining room table with a notepad attached to it that he asked me to hand him. He seemed to be preparing to go outside to the backyard to address some task. Although it is winter, the grass was very green, though skies were overcast and damp from rain. This parallels the actual weather which featured unusual winter thunderstorms this morning.

We talked. I knew he was just visiting from the other side. He seemed to be wearing white baggy shorts which I thought incongruous with the dark wool baggy sweater resembling one he always wore in this life. Our conversation was warm and casual, like we were catching up a little. I recall talking about how much I missed him, and mentioning some things I wanted to share. And – while I cannot now recall his exact words – I remember clearly hearing the sound of his voice, as strong as in waking life.

We moved closer to each other so it seemed like our bodies were touching in the start of an embrace. But this move led to him then standing nearer to the door opening. His free arm was outstretched towards me reaching and holding my arm. But rather than pull us closer, our hands began to slip away from each other.

“Come back”, I said. “Come back again in my dreams so we can chat.”

And as our fingers barely touched each other now, I began to awaken to the sounds of thunder and flashes of lightening outside my window, the skies opening up in another drenching downpour in this bizarre winter storm. The snow was gone and the grass showed hints of green through the faint patches of icy water in the backyard.

Keith’s photo, the one with the casual smirk on his face, now looked back at me.

“Visit me again, my sweetheart, in my dreams” I said out loud, only the puppy Lenny nearby responded with a quiet whimper.
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Lenny mugs for the camera in the new studio at Perry Road. (Photo by S.E. Fulmer Photography.)

[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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