Mara Jevera Fulmer's Blog

Sometimes it seems that if I can only stay busy, then I can keep grief and mourning from imposing itself on my psyche. But then something completely unanticipated jumps in front of me like a trickster, mocking my avoidance by tossing sadness in my path. The only way around it is through it. And so I barrel through. Once on the other side, it feels good again… or at least it feels like I can move forward.

Today was a good work day. It began with exercise, yoga, stretches, a little weight training. I have been trying to build more balance into my regime, returning to the yoga and strength training that is so important to my own health.

Over the summer, while caring for Keith, I had often felt guilty about doing these things. Yoga would de-stress me while strengthening my back. Yet how could I even think about my own health when Keith’s was in such rapid decline. It was a form of survivor’s guilt, but self-destructive none-the-less. After breaking my back (but not my spinal column) a few years ago, these exercises were critical to living a fairly painfree life, keeping the muscles strong in my spine, while building strength and stamina for the rest of my body. Yet, yet, yet…

I felt ashamed to spend time away from Keith when he would need me at a moment’s notice. Or I would feel the need to catch up on sleep from a long sleepless night. Or I would just feel guilty about giving my own health some attention for improvement when there was nothing I could do to improve Keith’s. Yes… this was definitely survivor’s guilt, indeed.

But recently, I’ve been able to move past this, and address my own health. The survivor. A new title I have yet to get used to. Survivor of what? I wasn’t the one who was ill. Survivor? It suggests a trauma where others were not so lucky. But that isn’t the kind of survivorship that one celebrates.

From my diary of July 26th, 2012, I wrote the following:

12:26 am, Monday, July 9, 2012

Shit, shit, shit….

That’s what was going through my mind earlier today as I drove up Saginaw St. in Grand Blanc, heading back from the Kroger on a mission to find the same blueberry fruit sauce that we’d just finished at home. Keith likes it best, the right combination of sugary blueberry juice and berries to mix into the plain whole milk organic yogurt I’ve been buying for him. American Spoon Perfect Fruit. Alas, Kroger didn’t have any of that brand. And Oliver T’s no longer carried that particular kind, although they carried the brand.

But as the tears started to well up into my already tired eyes, my body aching from spending too much time on my feet cleaning or cooking, I could barely keep them at bay. Instead, I just swore.

Shit, shit, shit. It wasn’t so much out of frustration in my failure to find the right item. I was angry. Angry at my losing battle in getting Keith to eat this weekend. I had felt armed to face the side effects of the chemo he had on Thursday.

Painkillers – check. Stool softeners for constipation – check. Anti-emetics – check. Marinol for hiccups, nausea, and appetite – check.

The only thing that I couldn’t “check” was Keith’s appetite. It was not only non-existent, but it was abhorrently repulsed by food. Just a spoonful of ANYthing sent Keith into spasms of mostly dry heaves, painful to listen to, and worse to watch as his thin frame convulsed with each effort to repel any attempt to break the fast that cancer and chemo have consorted to hold him…

… I attempted to start cleaning the den/studio/family room area. Part library, part book arts studio, part extended workshop for Keith, my depression returned. Upstairs in the living room, I could not get Keith to eat anything without vomiting. He’d asked for sweet potato soup. I made it immediately… from scratch. One spoonful and he put it down. He couldn’t eat it… so I put it away for later.

But down here in the family room, I tried to busy myself by gathering and sorting the pieces of Keith’s last project and numerous other bits of detritus of our lives. As I gathered up the pieces to a vacuum press, my iPod was playing “Always by your side”, the duet version with Sting and Sheryl Crow that we played at our daughter’s wedding last summer. It was the tune that Sarah and I selected for her father/daughter dance.

Tears swelled up in my eyes and my anger grew at the unfairness of it all. Shit. Why, he just CAN’T die now! How am I supposed to deal with all his stuff? Not only do I have his workshop here, but there’s a whole other life’s workshop at Perry Road! That was supposed to be HIS dream that I was supporting. What the hell am I supposed to do with all this stuff? …

Barely holding back my growing anger and helplessness, I tried to breath it back into submission. Not now. Don’t think about that now. Just do it. Just clean it up. Pack it up. But… He’s still alive and here I am packing up his things as if he’s already gone. “You just CAN’T DIE. THAT’S ALL!” I yelled silently in my mind. “How the hell am I going to deal with all this stuff without you!”

Guilt began to seep into my inner rage. What must he be thinking up there? knowing that I am picking up the very things that he would never have let me mess with in the past? But he isn’t thinking much of anything now. He sleeps in a restless slumber on the couch, moving only when the stiffness of his body seeps into his dreamlike consciousness and forces him to shift position.

My thinly veiled impatience was apparent to Keith as I would periodically check on him during my work. My back ached from being on my feet for more than five hours straight, still sore from the last couple of days’ efforts cleaning and sorting those drawers and shelves that no one pays attention to, but require mine in order to make life bearable.

Keith tries to eat something at my request. But I have barely turned the corner into the kitchen and I hear the now familiar sounds of his angry heaves into the infamous green bowl he carries everywhere. I return to see that the yogurt and blueberry sauce I placed on the table in front of him has barely been touched, just a spoonful missing. But the big green bowl now holds that bile-diluted spoonful in its entirety. When he agrees that he has finished his tribulations, I dutifully take the bowl up to the bathroom where I dump its contents into the toilet and wash and rinse it further, preparing it for another round of use.

Another hour goes by and I finally convince Keith he needs to take one of the anti-emetics. He sleeps yet another hour and finally awakens hungry enough that he takes on the rest of the bowl of yogurt and blueberry sauce. “I finished the yogurt,” he announces weakly to me, knowing my displeasure in not seeing him eat anything. He’s taken to showing me when he’s eaten… before he’s shared the empty bowl with the dogs. He knows I think he’s feeding it all to them when I’m not looking. It’s not that he doesn’t want to eat. But his stomach only accepts so much at a time… like a pregnant woman, it feels full quickly. But unlike her, he doesn’t feel hungry a short time later.

But, he says, the blueberry sauce wasn’t as good this time because we’d run out, and I used blueberry preserves for part of it. Too thick, he said. It didn’t mix as nicely with the yogurt like the other stuff did. So this time I headed to Kroger, rather than Oliver Ts, to see if they had it there and to pick up a few other items. But no such luck. The one thing he wanted to eat, and here I was failing miserably. I could barely hold back my tears as I drove down Hill Road towards home, at the failure I was facing… I felt like I was failing in my fight against Keith’s cancer.

Today, three months after that was written, I find that I am less prone to this guilt. I have even taken to looking forward to watching the progress of the Perry Road project, now nearing its final stages. New windows and siding are going up now. Inside trim and floor repair, along with some last sheetrock, electrical and plumbing will be the last of this project before it gets turned over to me and the kids for final overall painting inside.

So I was caught off guard when music triggered some emotions I wasn’t prepared for. The Indigo Girls tune was the first, and it was uplifting. An old tune from their first album “Nomads, Indians, and Saints”, the song “Watershed” filled the room with an upbeat melody with the words:

“Up on the watershed, standing at the fork in the road, You can stand there and agonize
Till your agony’s your heaviest load.”

I choose generally not to let my agony become that heavy load. Yet later this afternoon, as I doggedly worked through some homework from a class I was making up from earlier this fall, an old song came up, one that I’d selected as an anthem when Keith was first diagnosed. The Boxer, sung by Mumford & Sons with Paul Simon, came on the iTunes playlist. I stopped all that I was doing and turned it up loud. I sang along with it for a few lines.

“In the clearing stands a boxer and a fighter by his trade
And he carries the reminder of every glove that laid him down
And cut him till he cried out in his anger and his shame
I am leaving I am leaving but the fighter still remains.”

Keith fought well. But the boxer in him lost this earthly battle. Yet he left behind this survivor, this fighter. I went upstairs and crawled onto my bed and curled up, Lenny baby, Keith’s puppy dog now grown curls up beside me. The sun streams in onto the bed where I lay and tears come crashing out of the gate, no longer can I hold them back. Once recovered, I returned to my calm and headed back down to my work at the computer, turning on an inane movie to play in the background. Sarah texted me about something. And I wrote back an invitation to come by to visit, I needed a hug. She came armed with a smile and a special hug. She knew why I needed it. She’d texted me earlier that the Keith Emerson song “Churches” came up from his album “Changing States”. It’s an instrumental orchestral number that my Keith enjoyed listening to. This is what had started my iTunes journey that lead to the tears this afternoon. One song, leads to another, leads to an uplift, leads to tears.

But the fighter still remains…

It was nine weeks ago this weekend that I drove around this same curve, heading home from Grand Rapids from a day and a half of classes with my doctoral cohort. As I looked at that curve, the sun shining on a chilled nearly leafless late fall landscape, I could feel the chill of that time nine weeks before, as I gripped the steering wheel and screamed in an agony of anticipated grief.

It would be exactly a week later that my husband of 30 years would die after a very brief battle with an aggressive and merciless cancer. My diary from the night of my drive home read as follows:

8/25/12

With this blog entry, I hope to recapture some of the key moments in my process of saying goodbye to my soulmate, my best friend and husband. We had been together for 34 years, two-thirds of my life. It wasn’t until last week, after the last of visitors had gone, and my younger daughter had decided to stay back in Ann Arbor on her days off, that it suddenly occurred to me: I’d never lived alone. Yes, there were times when I’d been on my own for a week or two at a time, even a month at one point. But I’d never actually lived on my own. Keith would always be there to come home to, or be coming home to me. Now, it occurred to me that it would be just me, two large dogs, and a tortoise named Flash. I had to chuckle a bit. Guess I’ll have to work on better company.

There was another time when my journey home was painful, knowing all too well that the uncertainty ahead would be a road pockmarked with pain. When I was on my return flight from Russia, a week earlier than planned, I faced the real potential that my worst nightmares may be coming true. No, strike that. I’d never had those nightmares. The only dreams I’d had until then had been mysterious but uplifting, occasionally weird but always intriguing. This, however, was an impending nightmare. In my diary, I wrote:

6/6/12
“Skype is a wonderful thing, especially when you really need to call people around the world. So late on 5/9, when Keith told me that he’d gotten preliminary results from a CT and Ultrasound … I was thankful to this one small blessing of communication that allowed him to share the news. There were tumors in his liver. At first, though, I didn’t quite understand the meaning of that news. Keith seemed a bit too calm. Possibly metastatic liver cancer. He said they were scheduling a liver biopsy for 5/16. But it didn’t take long to find out what that could mean. And, when we spoke again the next day I asked him if he wanted me to come home and he said “yes” and thus began the first step for me in the journey back to the ultimate reality check.

… This journey together may likely be our last and I’m devastated by it. But the reality is that I will outlive my love and need to hold it together on the outside so I can be that “rock” everyone says is needed for him and for my girls. But this rock feels like an empty shell, sometimes filled with explosives that want to burst out and scream.

When I got back from Russia late on Friday, 5/18, I was really hoping it was all a dream. That was the longest flight ever in my life (even while I’d experienced longer time-wise). But I was hoping that when I walked through the front door, there would be a happy healthy Keith laying on the couch, standing up then to greet me with a hug, a kiss, and a passionate reunion… That was how it had always been with us. Thirty years of marriage hadn’t cooled that reception. My favorite part of traveling – though I’d done it many times on my own – was the reunion. He would miss me and we would curl up together in bed … and talk about the previous week’s happenings. That was how it was supposed to be this time, too.

But this time, the greeting was different. He walked downstairs to the hallway, barely could say anything due to the cough that he was still fighting. He’d taken a shower and was preparing to go to bed. It was very late for him, now nearly midnight, and he’d tried to stay up to greet me. Mark and Sarah had picked me up at the airport. Their concerned looks on their faces spoke volumes. Things were not going to be the same at home.

I went to hug him, but only two days out of a liver biopsy, his frailness already apparent under the henley longsleeved shirt he wore that hung on him like it was on a coathanger. How could I have missed his weight loss? I had seen that he was having issues with his pants, and even had worn a belt a couple of times… something he abhorred, and I could never have predicted before. But when I went to hug him, he pulled back. He was in a lot of pain from the biopsy and all he could do was summon a brief kiss. I sent the kids home with thanks and put him to bed.

I remember waking very early the next morning. I needed to put the house in order and my body clock was off by 11 time zones. Washing dishes, unpacking some things, putting in loads of laundry… I kept busy from about 5 am until he awoke around 7 or 8 am. It was a Saturday and we talked about what we would do if the biopsy came back positive for cancer. What a joke. Did it matter? He was still having fevers and night sweats, his fever hitting 102 or more at times, burning precious calories. His weight loss continued. His cough and hoarseness had continued. He slept most of the time. But I tried to stay positive. By Monday (5/21) afternoon, while I was on the phone with Michael, Keith got a call from his primary doctor’s office that the biopsy came back and they did not find cancer. The cells were benign and normal.

Unfortunately, the findings from that biopsy were wrong. About two weeks later, we would have the confirmation of Stage IV cancer of unknown primary, already spread to the lungs, liver, spine, stomach, with potentially the lungs or pancreatic biliary system as primaries. The only thing chemo was expected to do was possibly shrink tumors and therefore extend his life a bit. But after only two and a half cycles of chemo, Keith would die anyway, his tumors more than double the size, and his weight nearly half. The fact that he lived at all under such conditions was a miracle in itself. As they say in the movies, he was doomed from the start.

So why am I writing about this now? Because I have things to share, insights, fears, angers, emotions, grief… The rock has gotten stronger even after many meltdowns. I am told I must face my grief, allow it to happen. I do.

I cry. I write. I keep busy.

The night I drove home from Grand Rapids, that week before he died, I wrote the words to a potential artist’s book, a prose poem that captured the summary of Keith’s life. After that awful diagnosis, Keith and I lay on the sofa, curled up beside each other, crying softly. We could not talk to others. So I did the unthinkable. I texted the news. But then we talked to each other. We shared what we had done together, so much joy, so many challenges that we’d overcome. A loving marriage where we had grown together rather than apart. He talked about how he’d always been able to do the things he wanted, because we had supported him. Likewise, he had always done the same for me and the girls. Living overseas, we had made many more friends, while – ironically – becoming closer to those back home. We’d learned to depend upon each other more, become closer as a family, taking the world on together, as husband and wife, as the parents of two beautiful intelligent daughters. Keith said he had no regrets about the way he had lived his life. He had lived it fully, with the people he loved. He did not want his life to be defined by his cancer.

I wrote the poem that night when I returned from Grand Rapids nine weeks ago from this weekend, and only 14 weeks after my return from Russia, a poem that described Keith’s journey through life. I read it to Keith the night he died, September 1, 2012. And Sarah, our oldest daughter, read it at Keith’s funeral less than a week later.

Tomorrow night is a full moon. Keith died the night before a full moon, the waning gibbous. It was a bright starry sky that lit his path to the next universe. That parallel plane where I believe he now resides, still sharing with me the future in that other plane of existence out of reach, out of sight. Or is it?

I’ll try and explore that in a future post in this corner.

In the meantime, you probably have noticed that I find myself counting time. Everything seems to be measured in terms of certain landmarks: Travel dates, the summer of chemo, Keith’s final week, his death, his funeral, and the weekly anniversaries. Events, moments trigger a count. How many days has it been? When did I see that curve on the highway before, from this perspective? Ah yes, it was nine weeks ago, one week before Keith died, less than three months after Keith’s diagnosis, ten days after our 30th wedding anniversary, which was also just 16 days before…

It’s all about time, isn’t it? And it changes, depending on which side of the highway we’re traveling.

– Mara

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Photo: These roses were blooming on the climbing rosebush outside my kitchen window the morning after Keith’s passing. The two unopened buds are like our children, as Keith and I are the roses, his looking slightly away. Still, I smelled the roses for the first time in months, the morning after his death. It was the start of the next dreamstate. – mjf