mry writes

*a short story*

-God is not great. Now I know this.

-I never really believed in any God’s greatness. Now I know for sure.

-God created all, they say.

-God knows all, they say.

-If so, then God knows BRCA1.

-God created BRCA1.

-There is nothing great about BRCA1.

-It is cruel.

-It took my greatest joy, Eileen.

-If God created Eileen, God also put BRCA1 in Eileen.

-BRCA1, God’s creation, in Eileen, God’s greatest creation, took her from me.

-BRCA1 is ugly.

-God is ugly.

Once, we were five. That is when our story began. Even at five, Eileen was serious. Serious when she was not giggly. She was often giggly. And smiling. Short, blonde, slight. Same as now, but more so.

Now. I speak of Eileen now. As if she is here. As if I am still able to talk with her, hold her hand, cup her breasts, kiss her dimple, make her tea.

As if she is here now.

Last week she was here. I held her hand so tightly our flesh melded; coalesced into one single entity. I planned to never let go. She smiled one last time. No more. Now, the real now, the present now, she is ashes. I hold ashes and I am holding her. But there is no smile in the ashes. No coalesced flesh.

I am lost. I need to walk. I want my hand in hers as we walk.

I am sad. I need to clear my head; to free my soul.

I am lonely. We would often go for walks. We loved to go for long walks.

I am angry. We walked and talked, walked and argued, walked and debated, walked and shared.

We shared. From five to last week we shared. But no more.

How can I walk now? It is not fair. She should not have been taken from me.

Breast Cancer 1. BRCA1. An ugly name for an ugly gene.

-Oh God, you are ugly.

-Come and take me.

-Do not leave me like this.

-Do not leave me without my Eileen.

First grade, third day. Reading circle time. A cute little girl sits next to me. She has been quiet in class. She is blonde, with deep brown eyes. She keeps her head tilted down but her eyes keep peeking sideways toward me. She fidgets. I fidget. She looks at me, then down. I look at her and squirm. I wiggle my butt on the reading mat. I speak first.

-Hey.

-Hey yourself.

-I can read this story by myself.

-Me too. But I like Clifford best.

-I just got Mike Mulligan.

-What is your name?

-Matt. It is not short for Matthew. It is just Matt.

-I am Eileen. It is not short for anything either. Just Eileen.

Reading circle ended and arithmetic came. I was good at numbers. I helped her figure out her numbers. Then we had art. She was better at art. I struggled with making the pictures in my head and the pictures on my paper look the same. My in-my-head pictures always looked better. She tried to show me how to make the crayons behave, but it was hopeless. At least we were both good at reading circle.

That was day one.

In first grade we found each other, and we held on through adolescence. We continued to hold on for about 14,600 more days. 21,024,000 minutes. Twenty one million minutes. That is how long we breathed the same air. I have been doing a lot of calculating in the last week. I do not know what else to do right now.

As kids we never thought much about our relationship. We came together on the third day of first grade, and we stuck. We mostly matched each others’ rhythms and moods. Not wholly. Just enough to fit, to generally understand the other. Not so much that we could not sometimes argue. Of course we could; we were kids, and kids argue as a way of learning, a way of defining their worlds. We argued because I was stupid. We argued because she was unreasonable.

-Can I tell you something?

-Like what?

-Promise.

-Promise what?

-Not to tell.

-Not to tell who?

-Not to tell anyone.

-Not to tell anyone what?

-The promise.

-How can I promise if I do not know what I am promising?

-You gotta trust me.

-If I gotta trust you, you gotta trust me.

-Ok. But first promise.

-First tell me. Then I will say if I can promise.

-By then it will be too late.

-Then you are not trusting me.

And so it went. We argued because we could. Because it was safe. We could argue and not break anything. Like each other. Like feelings. Bend them, yes. Never break them. No matter what, we stuck. First grade. Third grade. Middle school. College and beyond. We stuck, through life and into death. It sounds idyllic.

It was, and it was not.

She did not know how ugly life could be. She did not know until she was invaded from the inside. She was invaded by her own cells. Then she knew how ugly life could be.

Now and then, as kids, we feuded. Sometimes the feuds were about nothing. Most times the feuds were about nothing. Most feuds are really about nothing. At least, nothing that matters. Still, at the time we thought the nothing of our feuds was something.

And we were right, but not in the ways we thought. Our feuds showed us how to argue, then come back together. We always ended up laughing at some silliness.

-When you yell stupid stuff your ears get red.

-At least my stupid stuff makes sense.

-If that is sense, I will take nonsense.

-You should. That is mostly what you say.

-At least I do not get all bulgey eyed.

-At least I do not hiccup when I get excited.

-Yeah, well I do not laugh so hard I fart.

-Then what is that stink that follows you?

-That is you!

It would often turn pokey. Pokey became tickle. Tickle was the safest touch. When the laughter stopped, things were good again. We laughed more than some thought was good for us. Too bad for them. It was good. It was sometimes even great.

Now the silliness, the laughter, they are gone. Now it is not great.

In high school we moved around, expanded our ranges. We learned some kissy face with others. We groped and panted with others. We mostly did not talk about that. Sometimes we practiced groping with each other. But we always stopped before skin. We did not talk about that either. We were too close to be lovers.

Until we became lovers. One day we became lovers. It just happened, and it seemed to be the right thing to happen. When I say it just happened, it was not really like that. It did not just happen as if we did not know what was happening. We thought about it, we talked about it. We made a conscious decision to do it. We wanted to do it. We wanted to do it with each other.

But still, it seemed to just happen. Some things are that way. You think and you talk. You plan and you waver. And when it is right it happens. And when it happened for us it was right. Oh, was it ever right.

For some time that first time, we explored. It could have been minutes. It may have been hours. It felt beyond time, beyond feeling. She was on me. I was in her. I was on her. She was amazing. Her breasts were wonderful. Her hips were wonderful. Her whole body was amazing. From that moment on, I was entranced by her body. I had long felt a part of her world. Now I felt a part of her.

After the first time, there was a second time. Soon, a third time. And time slipped by. We made love time after time, day after day, night after night. One day we married, and still we loved.

For more than twenty years we loved. We worked and we played. We lived well, if not large. I wrote, she taught. Where and what did not matter. The things we did for income did not define us. The things we did for us defined us.

Eventually, the thing done to us defined us. God, in his ugly greatness, defined us.

Eileen had a mammogram in her 40th year. Routine. Except.

-There is something to keep an eye on, said the radiologist.

-We will keep a close eye. You are the front line. You check regularly. We do not really know if anything will come of it.

So she began to check. One month she felt a new lump.

Her physician performed a needle biopsy. Sucked some cells from the lump. The cells went to a lab for testing.

Too soon, too late, the test results came back. Malignant.

-We should perform some genetic tests, said the gynecologist.

The kPCR assay revealed BRCA1 mutations.

-You have mutations in a gene called BRCA1, said the geneticist.

-BRCA1 is the culprit in some hereditary breast cancers, said the oncologist.

At Eileen’s conception the cancer had been foreordained. We raged.
Cried. Vowed to fight. Remembered an earlier vow.

-Until at death we part.

We had not known what the words really meant. They were only words. We were young. All of life was ahead. Death was meaningless, a non-entity. We were not ready to part, then or now.

That night we held each other. We cried, and then we cried some more. We made love as if the sheer force of our passion could drive the misbegotten cells out of her body. We loved as if it was our first time, and our last. Every second, every breath, every thrust mattered. And when we were done, we started again. Filling ourselves. Building a reserve against lean times to come.

In the morning we sat at the table, lingering over the first of several cups of coffee. Breakfast was oatmeal. Mine had brown sugar; hers had maple syrup. I sprinkled raisins on top; little wrinkled brown-red lumps, glacial erratics scattered on the dirty surface. The sun rose above the trees. Rays glanced off the ice on the lake, scattering sparkles across the landscape. A heavy front headed towards the sun, threatening to snuff the morning fire before it warmed the day. The threat of weather stifled any idea of going out.

-We should go away.

-Where?

-Some place warm and sunny. Some place where we can run around and be crazy without being foolish. Someplace where we can skinny dip at night.

-Any ideas?

-Not touristy. A place we might say ‘This is it. This is where I would live. This is where I would stay to escape the daily madness’.

-Warm. That rules out mountains. Sunny. That means equatorial. Caribbean or Mediterranean perhaps? Or a Pacific island?

-I think an island. I want relaxing. I do not want pushy or energetic or crowded. Not right now. Next year I might go for energy.

-An island sounds good. I want to see you skinny dipping.

-Why? You know me naked.

-I know. But I am picturing splashing in the surf with you. Watching your skin respond to the waves. There is a special feel of night air and water mixing on your skin, and I want to feel it. I want to experience you as I feel it.

-And I want to experience it as I feel you.

-I will call my editor. Push out my deadline. We can go to dinner this evening, then go get new suits. You pick the island. I will pick the shelter. Let us find the sun.

In the sun, we found a quiet beach. We romped in the sun, made love in the surf, slept on the beach. For one last time Eileen went topless in the sun. When she lay on the operating table, when they dissected her breasts, she had no tan lines. She looked good on the outside, even as she was being invaded on the inside.

I felt an urgent need to understand. What was happening? How did it happen? I plunged into molecular biology. Alleles, mutations, tumour suppressors, heredity. Genotype and phenotype. How genetic changes happen. What happens when genetic changes happen. I learned exotic names like Rad51, BRCA1, BRCA2. Names of genes based on some initial thoughts of their function, or their involvement in keeping us going.

Drosophila melanogaster, aka fruit fly, has genes with whimsical names. Couch potato. Decapentaplegic. Antennapedia. Fruitless. Dunce. Human genes are more serious, supposedly in keeping with the seriousness of the subject; more likely due to a lack of humour amongst that cadre of scientists.

I gleaned knowledge of DNA repair, transcription regulation, DNA replication. Things broken in cancers. I learned way too much molecular biology. Learned of things that were going wrong in Eileen. Learned ways to assess those things. kPCR. Heteroduplex analysis. Complicated molecular diagnostic methods.

The bottom line was a critical control mechanism was broken in Eileen. A controlling gene was no longer properly controlling. Processes were running out of control. Necessary fixes were going unfixed; checks were unchecked. All from a broken BRCA1, and its fallout.

I felt helpless. I needed to know. Knowledge is power. If I gained enough knowledge, enough power, surely I could fix Eileen. Surely I could. But I had no more power than all the scientists, all the physicians, all the gods. The power of love, the power of fear, the power of anger. None of these powers was great enough to fix Eileen.

If God had power, if God was great, he would fix Eileen. But if he was great, she would not have been broken in the first place.

And so Eileen’s breasts were dissected. The physical cuts healed; the psychic ones were more recalcitrant.

Radiation followed dissection. The psychic cuts remained. She was alive, but her life was borrowed. We looked to science, to medicine, for guidance. All they could do was react. To be more proactive, they needed more knowledge. They needed genealogy. They needed family history. They needed more predictive power. Unfortunately, they needed to see farther than was possible, at least for humans; at least for us.

Eileen’s mother was Sandy. Sandy was vivacious, alive, bursting with life every day. Always on the lookout for new experiences, open to adventure. Eileen was 11 when Sandy began climbing. Eileen was 15 when Sandy headed up Denali. She did not return. She simply vanished, probably lost in a crevasse.

Millenia from now a glacier may spit her out. By then it will be too late for Eileen.

BRCA1 is often hereditary. Eileen’s father did not have the broken allele, which meant Eileen got it from Sandy. Sandy was not available for testing. And Sandy did not live long enough to get the cancer that felled my Eileen. We could not judge the outcome, the prognosis, with no trail to follow. We were on our own. So I tried to bluff the disease. Scare it into submission by gaining full knowledge of it.

But I could not even get full knowledge of us, or of me. I was scared. I wanted Eileen whole. I needed to feel a whole woman. That is what I thought, at least subconsciously. So I got scared; scared of losing my whole woman. When I got scared, I got stupid.

And when I got scared I turned to Jennifer. She took me under her umbrella, entered me in her embrace. Like I said, I was stupid. I entered Jennifer’s embrace, which took me directly to her bed. Her breasts were whole, healthy, soft and alive. I buried myself in them. I felt their vitality, and I tried to glean some glimmer of hope for the future by betraying the past. I thought I was seeking living love. What I found was carnal love. Living love existed with Eileen, even as she was dying. Carnal love existed with Jennifer.

It was tawdry. I lay on the bed, watching Jennifer move around the room. She was naked, and she was beautiful. She was whole, unscarred, unashamed. I thought of Eileen. I thought of the scars on her chest, of the slightly lopsided form she now had. I was not trying to define her by her breasts. She was much more. She had always been much more. No, I was fearful of defining her by a disease. I was fearful of defining us by the consequences of BRCA1.

Jennifer was not Eileen. I could not fix Eileen by going to Jennifer, nor could I fix myself by going to Jennifer. Jennifer’s wholeness, her vitality, could only further break us, Eileen and me. I was scared, and I was stupid. What was I doing? What was I thinking? I was seeking an alternative to impending loss. I was breaking. Slowly, incrementally, I was breaking. But nothing of the beauty of Jennifer could mend me.

Eileen’s embrace came closest to mending me. The brokenness of Eileen’s ravaged breasts, within which beat a heart that had long beat alongside mine, recalled me to life. I hurt her, though she knew not how. Her scars healed. Her vitality increased. Her quiet grace shone. She never had a private face, seen only by me in the close of our home. She never put it on, or took it off. The view the world saw was genuine and unmasked. She was what you saw, whenever you looked. Her sanguinity remained, despite her plight. Her new blonde hair curled ever so slightly more, and her light wrinkles smoothed. She lived. Her smile lived. When I reluctantly opened an eye in the morning, my head sunk into my pillow, her smile was there to greet me. She embraced me, and she embraced life. I choked on my fecklessness. Eileen’s grace shamed my existence.

We gingerly sought to live again. A future beckoned. An unknown, unknowable future. Built on the past, but with a new structure. Jennifer faded back to whence she came, available but understanding. I deserved neither of them, yet I was granted both. Mysterious ways, indeed.

One year and seven months after surgery, Eileen woke in distress. Feverish. Vomiting. Weak and in pain. There came more poking. More tests. More cuts. Several nail biting sleep deprived days later, it came. The final verdict. Stage IV inflammatory breast cancer with metastases to her lungs, liver, lymph nodes and chest wall. A death sentence. And all too soon. We had much living left to do. We had plans. We had dreams unfulfilled. I was to be granted nothing. The penultimate word was to be God’s. Nasty chemicals came, and went, leaving Eileen haggard and beleaguered.

Near her death, when it was all too real and all too close, Eileen insisted I move on.

-Find someone new. Someone whole. Someone as good as you. Move on.

-Move on to what? To a happy sunrise, a sunny day with someone new? In what world will that happen? Not mine. Not one without you by my side.

-Move on to life. To life and laughter. To laughter and love. That is how I want to be looking down on you, perched on my cloud. Laughing and loving. Living. Yes, with someone new.

-We are not going to talk of this. I am not going to talk of a future without you. Especially while you are here.

-I am here. I am here, and I am going to stay here as long as I can. I just do not want any of those cheesy dramas. The ones that say ‘I cannot do the stuff we used to do with anyone else.’ I am telling you now, I want you to continue to do the sorts of things we used to do. I want you to do them with someone who makes you happy.

-But it will not be the same. And I am afraid it will hurt too much.

-Of course it will not be the same. It is not the same now as it was in the past. It will not be, and it cannot be. We move on. A part of me is glad it will hurt, but I am telling you plainly that I do not want to hear anything about the hurt being too much for you to go on living. And I will be listening!

As usual, she had the upper hand. Three weeks later I held her hand and saw her last smile.

-I am after you God. And if we ever meet, you have some explaining to do.

-I am not scared of you. I am not worried about going to Hell. You put me there already.

-I would send you there if I could. You are not so great.

END