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…