#DrawingTogetherGM 10: The Politics of Illness

Here is what I drew for this week's Graphic Medicine Drawing Together session. The prompt we were given this time was "Care as an urgent practical task". It was not an easy prompt, but we only had 15 minutes to draw so I went with what came immediately to mind.

When it was my turn to share what I'd drawn with the group, I asked them first to look without my saying anything. I wanted them to have an unguided response. Then I mentioned that this was a representation of me and my mother last year near the end of her illness. From my point of view, we were desperately trying to get her to eat, and (one time only) I tried to do a deal with her pain meds. I remember having a sudden flashback to feeding my baby sister many years earlier. She would sit in her high-chair in the exact same spot in the kitchen where my mother was sitting in that moment, and it felt to me like a similar situation, i.e., trying to get her to eat. It was just that instead of "one for you, one for me", or "here comes the airplane in for a landing!" it was "I will swap you a pill for a mouthful of soup."

It took me a while to understand that as her ability to be independent was being drained by the lymphoma, my mother sought any way she could to take some control of her life. And the one thing she had left was food. So when we said please, she said no. I get it now, but it was tough at the time. The fact that she was fighting was actually positive. And it is easier to see from here that while I truly wanted to alleviate her suffering, I  must admit that part of me did not want to feel it either. 

It's not something I ever really thought about before my mother got sick. I've rarely questioned the concept that medicine is something to help you get better. A simple perspective, I know. In a world where things are now rather more complicated. And so, looking at the drawing that I did, seeing what came first to my mind, now I ask:  where is the boundary between numbing the pain so that the patient's suffering is alleviated, and numbing the patient so others are not overwhelmed by their inability to cure the ailment? And who gets to choose, and why?

When someone you love is suffering

Posted this week on the LJ website as the Thought for the Week, I try to express something as my sisters and I try to support our mother through the most difficult days:

When someone you love is suffering, and there seems to be little hope, what can you do? The Psalmist says, "Call upon Me in time of trouble; I will rescue you" (e.g. Psalm 50:15). Dear God, I say, please don't let her die. And she does not die. I thank God. But then the next time I pray, dear God, please don't let him die. And he dies. These are the most sincere prayers I've ever prayed, but the outcome is unreliable. Yet, in a time of utmost distress, my instinct is to ask God for help.

What does it mean to pray? I think that we grow up believing that it is like making a wish. We ask God for the things we want. As if God were a fairy GODparent, or a genie. It is the way of a child. But when things are desperate, we become very childlike. We feel utterly powerless, and cry out for a superhero or a parent to swoop down and make it all better. We don't know what to do.

One of the hardest realities to accept is that there are things that we cannot do. Scientifically, in the physical world we cannot prove that anything is impossible, it is just not possible currently. There always remains the hope that one day, someone, somewhere will figure it out. Meanwhile, we just find a working hypothesis, a quotidian path that is universally accessible. For the Jewish community, that route is the mitzvot, a set of guidelines for our relationship with the world around us, and the people we meet on our journey.

Our parasha, Ki Tetze, contains the largest number of commandments in one portion. There are 72 mitzvot (according to Rambam in Sefer HaMitzvot. Other sources say 74) listed this week, laws relating mainly to family relationships and interpersonal ethics, for example, blended families, labour laws and honest business procedures. It says almost nothing about what God will do for us, and focuses on what we humans must do in order to make the best of our lives on this earth. These laws suggest practical ways to deal with everyday situations. There are some that may not make sense, such as forbidding cloth containing wool and linen (shatnez, Deut. 22:11), or stoning a rebellious child to death (Deut. 21:21). As Progressive Jews, we consider these verses a challenge to stretch our minds and hearts in the search for a deeper meaning. We try to understand what doesn't seem relevant, we take on the tasks we believe we can achieve, and we continue along the way.

If what we can manage is in our own hands, why then do we pray? Tradition teaches that prayer is a mitzvah, although it is unclear if this is a biblical or a rabbinical injunction. Once again, it is something practical that we may do. From a rational perspective, if God exists, surely God knows what is in our hearts. So what's the point of saying it? Perhaps God knows, but do we? What have we hidden in the crevices, fearing it may overwhelm us? What do we need to reveal, if we may hope for shalom, to be whole? Surely we pray for ourselves, to release the deepest thoughts and feelings of our souls, to make them concrete, and tangible.

But I prayed that he would not die, yet he did. And now I pray again for her to live. Why am I asking you this, God? Why do I continue to pray?

In the Tanya (chapter 19), Rabbi Schneur Zalman says that faith is not something to be attained. It is part of our essence, woven into the very fabric of the soul. He teaches that faith waits only to be revealed. I've always found this difficult to understand. Today, as I pray for my loved one, I see a possibility. In those moments when desperation fills the heart, there is neither space nor energy for sophisticated thought processes. Logic and philosophy and reason have no power. Could it be, in that exact moment, that the instinct to pray is a taste of revelation?

As Moses prayed for his sister Miriam (Deut. 24:9)

El na refa na la (Num. 12:13)

so do we pray for all who need healing.
Keyn yehi ratson - May such be the Divine will.

For Aviva bat Miriam v'David.