“I Wish Things Were Different”

My sister, Beth, who was diagnosed with ALS in July of 2007, passed away last week on Friday evening.

For years, a wall of anticipatory grief has been building around us. Her grief. Mine. Her husband’s and children’s. Our parents’.

She seemed at peace at the moment of her death, which contrasted to the way I’d gotten used to seeing her. First with difficulty speaking, and bruises from her occasional falls; then with a broken leg; then with terrible twitching and rigid muscles, and a complete inability to chew, eat, or speak. She couldn’t wave or change the tv channel. Eventually, she could not cough or clear her throat well enough to manage saliva and finally, fluid in her lungs. And in the last few weeks, we came to a place where not even the medical professionals could manage things for her with invasive equipment. It was hard for her to open her eyes.

Her condition, however, did not change her sharp mind, or keep her from being a great listener, or the person with whom I shared my childhood. It didn’t keep her from being her children’s great ally and protector. It didn’t keep us from listening to podcasts of “The Moth” together, and it didn’t keep her from understanding what people in the hospital were saying, when they assumed that someone so physically compromised must also be mentally challenged, or deaf, or some combination.

She’d been hospitalized a week before for aspiration pneumonia, but she didn’t respond well to suctioning, and her fluids were withheld because her lungs were filling up. The goal had quickly changed from curing the pneumonia to trying to help her leave this life in as humane a way as possible.

Beth died on the hospice floor of the hospital. I always used to picture hospice as a porch of a white, or possibly gray, Victorian farmhouse, and a rocking chair with someone who isn’t feeling well in it. There is a blanket on their lap.

Hospice, as it turns out, is just one more floor in the hospital, but it’s as close to my vision as they can make it. It’s brownies baking in a communal kitchen and Kleenex everywhere and extra beds so that people getting ready to say goodbye don’t have to go home overnight if they don’t want to. It’s better lighting, pretty nightgowns, upholstered furniture, and quilts knit and then donated by people who are sorry, just so very, very sorry.

Hospice is real flowers in huge vases of translucent purple glass, pushed against the window in a dramatic, life-affirming display. It’s three flavors of ice cream stocked in unlimited quantities in the freezer, and real milk for the coffee.

Hospice is morphine, and morphine is a reminder to someone who is in pain — be it physical pain, or fear — of what relief can feel like. Morphine is a pre-shadow of death, but in a good way, and hospice is, too.

Hospice is a love of life and an honoring of death.

My sister didn’t like to be alone and she died with her dear cousin’s hand on her brow, me sitting on her bed with her hand in mine, her husband of sixteen years on one side, our mom on her other side. There were more visitors in the room, as well. She died in an actual crowd of people who loved her. We were jostling to get in and tell her we loved her. She already knew that, though, which is part of the reason why it was so hard for her to leave.

As we sat there, it was as if the volume was turned down, and down, and then down almost as low as it could go. Her pulse was lighter, and her breathing was less beleaguered. And then she was barely breathing. And then at some point, she was not breathing, but the change was nearly imperceptible.

If I can say this without sounding ridiculous, I will say that it was nice.

And while, wow, does it make me want to pass out slaps when some disconnected jerk tells me that my sister is better off, because really, who are they to proclaim about things they are so distant from? I can say, though, that I could see that she was finally not under the thumb of the wretched acronym that has been plaguing her for years. And to be absolutely frank, has been plaguing the people who love her most for years, and the people who love the people who love her most, for years. Throw a disease into a family like a coin into a pond and watch the ripple bounce out.

The funeral and the wake are sort of like proms that you have to get ready for, flowers, outfits, music, who will be there, etc. They are a wonderful chance to create a tribute and to be distracted. My sister’s wake had people lined up for hours, and we in the receiving line never got to sit down. My sister would have loved it, and I loved that aspect. I also found it therapeutic to be told for four hours straight by friends and people I’d never met alike that they are sorry for my loss. I explained to my nephew, in his small striped suit and clip-on dinosaur tie, that while the crowd was overwhelming, that each person in the pile of people waiting to speak to us was there because of great love or respect for his grandparents, or his parents, or him, or me, and that it’s a really splendid display of a giant amount of love when you look at it all together like that. And it helped me to see that each of my nephew’s teachers was there. Not just his teachers from this year, but every teacher he has ever had, don’t forget music and gym. And the ladies from the office. Oh, and Sunday School.

People who bother to come to a wake or drop off a quiche or quietly have a lily delivered are saying I wish things were different. It’s something I overheard my aunt saying to my sister on one of the last days. Another friend wrote it to me, too. And I think it can be such a simple, unglossed, sincere, loving statement. And even if you don’t have the lily a month later, you have the memory of the lily and if you feel alone, and even if you are sitting around alone, crying, you can at least wrack your brains and know that the lily-sender wishes that you felt better than you do. And even if that doesn’t make things appreciably different, it does make you aware that you are slightly less alone on the planet, which is the true problem you are trying to combat, anyhow.

It’s not a month later yet, but this is at least what I imagine to be the case.

I don’t have any idea what I am talking about, but I am very scared of being very sad.

The public tributes are over. I already don’t want it to have been a week. When I look at the obituary, I feel scared that it’s not going to be one of the most current ones. I don’t know why. It’s been such a long time already since I could call Beth to ask her advice or to pass some time as I walk to the subway. But now I won’t even be able to visit her and tell her the stuff I store up to tell her.

Sadness isn’t necessarily the big things, but can be a giant and overwhelming pile of little things.

I miss you, Beth. I love you. I wish things were different.