A Question of Community

Not much to eat. Let's go out!

A fair amount of food, but nothing to eat.
A fair amount of food, but nothing to eat.

Three Days and Counting: What to do with my body if...

I'm sure anyone following my stories is sick of hearing how freaked out I am about my impending bilateral mastectomy on Tuesday. Believe me, I'm just as tired of feeling freaked out by it. But whether I want to face it or not, there's always that chance I could die on the table during those 10 hours, or later from complications following the surgery. I'm not just trying to be my sweet pessimistic self; these outcomes do happen and that's why my parents came up yesterday afternoon to have dinner, bring me a form to fill out for the hospital regarding my health care decisions and join us at Shabbat services.

If I become unable, I want the people around me to make decisions about what to do with me. Heading into surgery, there's one outcome that is fantastic, and too many alternatives that are not. Other than the single fabulous scenario of everything going well with as little residual pain as possible, my paranoia-poster-child brain tells me I need to prepare for anything. Death is one obvious outcome. But worse, in my opinion, would be a situation wherein my brain dies and my body lives on, supported by machines. I wouldn't want to live like that. It would be too painful for everyone around me. Not to mention the draining expense on my already stressed-to-the-max husband. It's selfish and cruel and unnecessary.

Therefore, if I should die, I want to give my useful parts to people who really could use them (for transplants, not to be some first-year med student's chop-job dissection project or, for that matter, to rot in some open grave so the CSI guys can study the decomposition of a body). Then, bury the remainder of my body in a simple pine box in that pretty cemetery where our family's very close friend (felt more like family) "Hotdog" Mike was buried a few years ago after his cancer took him. I certainly don't want to be buried in that cold cemetery in the south bay where the rest of the family is and I don't want one of those fancy coffins.

"Why wouldn't you want to be with the family?" my mom asks.

Spending a Sunny Saturday with Mark and the Kids in St. Helena. The warm day takes my mind off of Tuesday.

South City Fog

The fog rolls in every day in South San Francisco
The fog rolls in every day in South San Francisco

I Don't Want to Leave My Heart In South San Francisco!

"You think I want to be stuck in that cold, South San Francisco weather with its year-round fog?" We moved away from that crappy area a long time ago and I certainly don't want to move back. After moving to a warmer climate, it took several weeks of my mother trying to convince me I didn't need a parka when I played outside. "I know the fog is going to roll in, mom," I would tell her. It would be in the 80s outside and I would be wearing that heavy parka. I certainly don't want to endure cold days and nights in that shitty cemetery in south city.

"But you won't have anyone to talk to." Yes, my mother is talking about how I may become lonely after I die.

"Precisely! You think I want to be listening to a bunch of whining and kvetching Jews for all of eternity? Oy, my back hurts, my skin feels so dry, my children never call or visit. Ech!" I answer my mother after mimicking my relatives. "I'd rather be where it's warm and there are pretty trees and rolling hills covered in summer grass that ebbs and flows with a soft breeze. And Mike will be there. He's fun to talk to. Put me there, or out by the coast where I can sit on the beach and watch the waves." Yes, these are real conversations and not just in my head.

I probably shouldn't have filled out this form at the dinner table (a restaurant, of course) with the kids sitting there (bad mommy. Bad mommy!), but I had my retired-attorney, going-blind-from-diabetes father there and I wanted to make sure I was filling it out correctly so I didn't end up as someone's science experiment.

"If I am dying, it is important for me to be: At home. In the hospital," I read out loud.

"Is mommy dying? I don't want her to die," whined my youngest.

"No, sweetie. Mommy isn't going to die. They just want all the bad information, but they will do everything to keep mommy alive and come home to you and your brother," my mom told her.

"I want mommy to die at home," she chimed back like she was choosing between going roller skating or to Chucke E. Cheese.

"Nah, I'd rather die in the hospital. It's more difficult to sell a house when someone has died in it," I respond.

"Yeah, you’re right," said my mom, a former realtor.

And anyway, you expect people to die in a hospital. It's just creepy to think of dying at home. I remember that sickly sweet smell that stuck around the house for a long time after our St. Bernard, Daisy died when I was a kid. Yuck. Don't want that in my house.

So, everything is filled out and witnessed by the waitress and her friend. Off to synagogue we go.

I have mentioned in the past, I consider myself more of a "cultural" Jew rather than a "religious" Jew so it may seem strange to find me in synagogue to celebrate Shabbat. In fact, during the six years since we joined this synagogue, a week ago Friday was the first time we have gone to regular ol' Shabbat services there.

We have been to high holy day services and numerous holiday celebrations, many of which I helped plan as part of the religious school parent's committee. I was raised in reformed Judaism, but I wanted my kids to go to religious school so they have a foundation of Jewish knowledge and experience. Then, when they grow into adults, they can decide on their own what they want to do religiously.

That first Shabbat service we attended was the "children's service" that happens once a month. The rabbi gets all the kids involved with the service by saying the Hebrew prayers they've been learning in class. There's a dinner, the service, then dancing and treats. Jesse's teacher who is from Israel actually sang Hebrew songs with the band. We've missed all the other "kids' Shabbat services" and because Jesse must attend a lot of Shabbat services this year leading up to his bar mitzvah, we need to go anyway.

Last night, (I know, Rabbi; I'm a terrible Jew because I'm writing this during Shabbat, but finishing it after sundown) was the second time at Shabbat services. Actually, last week we had found out there would be some speakers this week that seemed interesting; all about elder care facilities in our county and how to avoid senior citizen scams. That's why I brought my parents to listen.

We arrived 15, 20 minutes early and with only two cars in the parking lot when we arrived, the kids thought we had the wrong night.

"No, sweetie. It's Friday night. It's Shabbat."

Sophie went running ahead into the courtyard and through the social hall and sanctuary before running back through the hall yelling, "He's here! That guy is here!"

"That guy? You mean, the rabbi," I said.

"Yeah, that rabbi guy," she called out. I'm such a terrible Jewish mother.

The rabbi looked almost as surprised to see me walking in as he did a week ago when we arrived, late of course.

"I bet you didn't think you'd see us here again tonight," I said to him. He was at a loss for words. My mother broke into the conversation.

"So, I hear we're related," she said to him. That's right mom. Make the guy feel bad by reminding him he is very distantly related by marriage to the member at his synagogue that has issues with God. "We've probably passed you at various family events," she added with enthusiasm.

The Rabbi kept trying to escape since people were arriving for the service and he needed to get ready in the sanctuary. My mom continued talking as much as she generally does until he finally found a safe break and got away.

I've had a number of interactions with our rabbi over the years, but mostly in terms of our kids attending the religious school. At one time, he even told me he thought I was an atheist based on what someone else had told him.

No, I told him. I don't consider myself an atheist. I figure, I may not have blind faith in this thing called God, but if I have conversations -- more like arguments -- with God, then I must somehow believe in God or some sort of all-encompassing power or entity; something more like "nature." Still, I am a strong believer in the beauty in the natural design of chaos. The universe is too enormous and complex and chaotic for something as simple as the idea of "God" to be the only answer. That theory seems restricted to the human mind's limited and fearful imagination. More on that another time.

Most of my life (ah, who am I kidding...all of my life), I've felt like a misfit. And yet, standing in the Synagogue's sanctuary that first Shabbat service a week ago, after speaking with the rabbi and some new friends who entered my life recently because of my impending surgery, I suddenly felt for the first time like I had a community. That's a very empowering feeling.

The synergy of my friends from the synagogue combined with friendships developed through my kids' schools has created this circle of support that allows me to breath. Don't view this as some enlightened spiritual moment. Just knowing I had this support system in place allowed me to more calmly approach my surgery with one less thing to worry about during recovery.

Don't think I'm going all weak in the knees over religion. Even the rabbi didn't expect me suddenly to become spiritual when I requested he send out a "Caring Community" email to the members of our synagogue. The synagogue sends out those emails when there's a celebration, a birth, a death or even when someone has surgery and may need good thoughts or help during the recovery process.

"They don't have to pray to anyone, I'm just asking people to put good thoughts out in the universe on Tuesday when I'm on the table. I figure it can't hurt," I told the rabbi who just found out last week about my surgery. "It's like when my sister had her first breast cancer and everyone had ideas of bringing positive energy around her to help her heal. This one Chinese friend of my mom's told her to put red ribbons on the furniture throughout the house to bring good luck. Suddenly, my mom was hanging red ribbons everywhere. Some of them still hang in the house."

"That's actually Kabbalah," said the rabbi.

"Really? What do ya know," I was surprised.

"Well, don't worry. We'll get the word out and you'll have more meals and help than you can possibly need," he said. He also agreed, based on our past conversations, it's probably better we leave God out of it. I found his acknowledgement of my "issues with God" and his unconditional caring very comforting and realized in that moment it is okay I am such a fuckup in too many ways.

It's okay that I don't practice the religion of my ancestors as respectfully as I probably should. It's okay to approach the rabbi and ask for help. It's even okay that during Shabbat services while looking down at the prayer book and trying to follow along with the transliteration of a Hebrew prayer, we didn't notice everyone stood up near the end of that prayer. Everyone was standing except for us (making matters worse, we were in clear view of the rabbi and everyone there that night). And even though after everyone would say "amen" at the end of various prayers Sophie would call out a lone, "Yay," he still found it in his heart to leave the sanctuary during the silent prayer and return with Tootsie Rolls to offer to my kids.

So perhaps in keeping with my theory of organized chaos, I was sent to test the rabbi's patience when dealing with someone who may question God and faith. And maybe this genetic mutation and resulting surgeries were the universe's way of challenging my sense of control by producing an ironic necessity.

What I mean by that is this...Since the time my children were in pre-school, I (or my husband) have always insisted on driving our kids on field trips. This ongoing rule is result of my having lost my sister when she was killed as a passenger in a car. It's taken years of knowing some friends to allow them to drive my kids anywhere, even down the street. Moreover, I have turned down many offers of carpooling because of the control I kept over what cars my children are allowed to drive in.

It's bad enough that I have anxiety over them driving with my mom, or even my own husband. But now, as we approach the summer and all the activities our children are involved with, I find it ironic that one of my greatest needs is to trust others to drive my kids during my long recovery. A friend pointed this out to me. Yes, it is truly ironic. So, maybe someone or thing really is trying to send me a message.

P.S. I'll be adding some photos tomorrow (after our Mother's Day celbration, of course...it's a big surprise!)

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Let me know what you think... 2 comments

steph 7 years ago

thinking of you joey. sending warm, healing, good thoughts, and many extras on tuesday.


Tricia Lee profile image

Tricia Lee 7 years ago from Colorado

Very heart wrenching. If I had the power to take this away, for you and your family, I would. In a perfect world, no one would be faced with such life altering decisions. All the best to you and your family.

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