I wrote a few weeks ago about a beloved brother and said he was “dying by inches”.
I was wrong. He is dying, not by inches but millimeters, and we have been told that we are now, truly, near the end.
My grief for my brother (really my brother-in-law, but my husband’s family could not be more dear to me if they were my own, and so I choose to leave off that in-law crap) is rather different than the grief I am feeling for the family as a whole, but I am grieving for all of them. After dealing for over twenty years with HIV and AIDS, my brother’s descent has been unnervingly swift, and although we have had almost two decades of subconscious knowledge that S would not always be with us, I don’t think any of us anticipated what that reality would be. It is upon us and it is harrowing.
A slow but steady weight loss over a period of years accelerated to a thirty pound loss in one month, and we began to count a day victorious if S could tip the scales at 100 lbs. The horrific diarrhea and vomiting cannot be described. Watching a beautiful and creative, vibrant man – a man infused with immeasurable kindness – suffer though one bout of illness after another has been…well…no words will do.
But the cruelest and most vicious manifestation of this evil disease is the dementia that has swooped in like a raptorial vulture, too eager to wait decently for its carrion prey, and stolen S from us.
He is here, and yet he is gone. His brothers – all honorable men – are trying to keep promises made to a man who is no longer really there, and it is a raw time for them as they begin to accept the truth that not every promise may be kept. That’s hard. It’s very, very hard. It feels like defeat.
And for his parents, particularly for his mother, there can be no greater sorrow than to witness this rapid going-away of her son, still here, still suffering in body, but now tormented in mind, as well. Every once in a while, there is a little glimmer, we see a few seconds of S, before he fades behind eyes that stare out, seeing nothing, or glare wildly about the room in anguish, full of fear and regret.
There are periods of lucidity and periods of gibberish. Fevers come and go. Blinds are opened in the morning and closed at dusk. We speak in quiet tones, and drink coffee. The ticking of the clock is intrusive and draws our resentful attention. The television stays on the Food Channel, because in this family, food is life, cooking is an expression of love, and because there is something therapeutic and reassuring in watching creation and transformation, in observing the joy of the chef who is concocting. A humble mix of chopped meat and sausage becomes a seductive Bolognese Sauce. Egg whites and sugar and air create a whimsical confection. There is a huge metaphor there about God and creation, about human potential, heaven and earth and unconditional love. But I can’t write it.
I am waiting for S to die. I am waiting for the bitter ingredients of his illness, and the sweetness of this familial love to explode into a keening sorrow, because I can offer almost nothing to this process until then. As I wait, I am looking at hymns and scriptural readings, poems and tones. I am preparing the liturgy of my brother’s funeral mass, now, when we are all still somewhat in our heads, because I love these people and I want to find a balm of…if not healing, then at least hope. It is my deep privilege, and my most humbling task. My husband’s parents are the epitome of what Christ exhorts us to be, selfless, generous, forgiving, hospitable, loving. They deserve to be treated like nobility because they are noble people. Their sons are princes, to a man. I am a better person for knowing these people. Please pray for them. And pray for me, if you will, that my small offering to them, this libretto for saying good-bye, may be worthy of them.