Never shall I forget that night, the first night in the camp, which has turned my life into one long night, seven times cursed and seven times sealed. Never shall I forget that smoke. Never shall I forget the little faces of the children, whose bodies I saw turned into wreaths of smoke beneath a silent blue sky.

Never shall I forget those flames which consumed my faith forever.

Never shall I forget that nocturnal silence which deprived me, for all eternity, of the desire to live. Never shall I forget those moments which murdered my God and my soul and turned my dreams to dust. Never shall I forget those things, even if I am condemned to live as long as God himself.

Never.

Elie Weisel

I thought to write about the movie we saw this weekend, Defiance, a true story of the four Jewish Bielski brothers who escaped German death squads and established a community for other Jews in the Belarusian forest during the Russian collaboration with the Nazis in 1941. The film is powerful and I could not help but be overwhelmed by how the metaphors of survival and courage expressed through the individual characters were so similar to our lives now—to Maxx’s then. I am still thinking about the tremendous courage those people displayed. In the face of such madness, such evil, grew a community at first tenuous, then vibrant and committed to that which is most precious in the human soul—an affirmation of life.

I am thinking about how Maxx had come to this awareness, at least for awhile— before he knew he would not live. It is hard to think about what he knew or thought after he realized he was going to die. We could not talk about this. He chose not to and while enduring this was more painful than I would ever have dreamed, I respected his need for privacy. He was dying and how he chose to leave this earth was entirely his decision, not mine, to make. So I can only imagine and this imagining is fraught with pain and anxiety, confusion and ambiguity. I have not yet, nor perhaps will I ever, come up with that story, the one you tell yourself, and try desperately to believe for just a few moments of silence.

But, I am distracted from my original intent. Leaving work today I was called into my boss’s office. He wanted to “ask” me to take on an additional task, one that would require more responsibility than I am either ready or able to manage. Recently, I asked to be allowed to work 4 days a week instead of 5. I had expressed a need for a reduction in responsibilities and a change in my workload in order to avoid having to take a stress leave of absence. I was granted both requests.

Today, I refused to take on this additional task and explained again that I am not the same person I was before Maxx died. I stated that this was the place where I came to work to perform a certain set of duties that comprised my job—those which had been specifically decided upon when I reduced my work week. Then I went home and resumed my life in hell. I try not to bring my personal destruction into work with me, but I am still devolving emotionally and I am not “OK.” He replied that I seemed to be fine and not “too spacey,” able to perform my job without any apparent difficulty. I told him it took every last bit of resolve I had to last the day before I could get home and to bed. He went on, I went on. I realized half way through this insane discussion that he wasn’t hearing me. He began to tell me about the challenges he faced raising two small children. I answered, “Yes, I raised two children as well. People do that all the time. It’s difficult to be sure and certainly a challenge, but it’s done. It is not the same as watching your child receive torturous chemotherapy, suffer, and die while you stand by helplessly unable to do anything. It’s not the same. And I’m not the same. I’m sorry, but I can’t do what you ask.”

Listening to his rationale for why he was making this request, it was as if the discussion we had 6 weeks ago about my stress level and health had never occurred. And this fact became the focal point in my mind for the continuing absurdity of the conversation that followed. For everyone around me, with few exceptions, it is as if I had never had a son who had died a brutal death from a vicious disease. The unspoken, implicit message is that it’s “time” now to move on. Given that it’s over a year, at the very least I appear to be quite deliberately dragging my feet. “Some people choose to be miserable,” one co-worker once told me several months ago.

The discussion was hopeless and I could see that, though I continued to try to make myself understood. Eventually, I gave up. He accepted my response. But he did not accept my reason. That my son has been dead for 20 months made no difference to him. Those who knew me before Maxx became ill, believe that because I show up every day, I am as I have always been. Though no one would ever willingly admit it, they are all sick of my “excuse” for what they see as my withdrawn demeanor, my hesitancy to speak, my unwillingness to engage on any level.

I am not ready. I may never be ready. That is my choice—the only privilege I have left. To be left alone to be whoever it is I am, or will become. I owe no one, other than my husband and daughter, anything. I am not here on this earth anymore to please others or to acquiesce. If I choose to dwell, now and then, among the living (or I never do again) that is ultimately my choice. If this means, in the end, that my futile attempt to be honest (speaking without rancor) to my superior results in losing my job, then so be it.

At some point during this pointless exchange, my boss began with the sentence that so many bereaved parents have heard. “I can’t imagine what…. .” I stopped him and said, “No you can’t. No one can unless that person has watched his own child die. It’s unimaginable. It’s unthinkable and nothing that anyone should ever have to witness.”

I tried to make myself understood, but I think I only had one thing confirmed. Most people, though they may hear, do not listen. They do not think, or feel with their hearts. Compassion is not the equivalent of convenience.

If there are a few things that I would wish “outliers” to know about "us," it is these:

Understand that we are not who we were. We will never be who we were. Stop pushing. Give up waiting, glancing at your watch, tapping your toe, congratulating yourselves for being so patient and kind. We know what you are thinking and it is a terrible pressure you are exerting upon us, injured and disabled as we are. We cannot join you now. It will be a long, long time before we are even ready to wave across the canyon that looms between us. Let us determine our path according to our own timetable. Do not forget to respect our differences. For we can never forget that once, not so long ago, our babies lived, grew beautiful and strong, were filled with laughter, potential, joy, spirit, courage, commitment, morals, beliefs, hopes, dreams, promises. You may “forget” to remember that our child was at one time, our life’s blood, that he was ALIVE. But we do not forget. Not for one single solitary second of any day does the awareness of who and what we have lost ever leave our minds or our hearts.

Please do not make assumptions about me to ease your own conscience.