Tag Archives: cancer

Mr. or Ms.?

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My oldest son, Peanut, was reading to his dad while I read to the youngest. We were spread across my big bed, west to east: 44, 8, 41, 4. And Peanut was reading something mythical that involved Dukes and Duchesses. But he didn’t know what those titles meant. So his dad explained briefly about Prince and Princess versus Duke and Duchess in the way that only postcolonial, anti-feudal Americans can.

credit hotblack via morguefile

The gist of it was: peripheral royalty, different word for each gender.

“What would Jay be?” Peanut asked.

It’s been six months since Jay died. I’ve written about him often, including once since his death.

And in none of those posts did I mention that he was transgendered. Mostly because it’s none of my business. Part of being an ally means that friends who are different from me aren’t marked by what they are or how they self define, but by my relationship to them. I said as much to my son when he called someone at school gay.

Jay wasn’t just my friend who was born an adorable Mormon girl and lost family and Church and marriage as he found out who he was. He was my friend, a kind dad who was also a mom; a human who had great days and bad days but was always nice even to really dreadful people. And who he was—day to day—was more important to how I thought of our relationship than the long road that brought him into my life.

And Peanut knew Jay as kind and funny and awesome. And he also vaguely knew Jay used to be a woman, because it had come up in a conversation about being who you really are inside. So I told him casually about transgender people when it was pertinent to the discussion. I didn’t bring it up to shock or preach or titillate. I mentioned Jay being able to finally be who he really was, because it was part of what we were talking about that day.

And after a few questions entirely appropriate for a kindergartener (which he was, at the time), it was just another fact about another friend. No big deal. Never came up again, nor should it have.

But this week, six months after Jay died, six months after he left his new wife and their blended family of three kids to figure out how to live without him, Peanut asked if Jay would have been a Duke or a Duchess.

I choked back the sob of surprise and pain that catches all of us unaware just as we’ve learned to live with loss. And I tried my best to answer.

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“Well, back in the time that book is talking about, a long time ago, people believed you are what you’re born. They didn’t talk about people wanting to be a different gender, or about wanting to marry someone from the same gender, or about women having jobs or anyone voting. So Jay would have been born a Duchess, and even if he wanted to, he couldn’t be a Duke. There were definitely people back then who didn’t feel right in their bodies, and some who wanted to be different than they were born. But it just didn’t happen. People didn’t like difference.”

He frowned. “But if everybody agreed that it’s okay to…if everybody agreed…if…” He couldn’t find the words he wanted. “If everybody agreed it was okay to be whoever you really are, then could Jay have…?” He paused and waited.

“Do you mean could he have changed his body? Did they know about hormones and the way bodies become men and women bodies?”

“Yeah.”

“No, they didn’t know about the science of bodies. And so even if everyone agreed that Duchess Jay could go ahead and be himself as Duke Jay like some people do now, he wouldn’t have been able to take the hormones that gave him a beard and a lower voice and things like that. They didn’t know about hormones, and they didn’t have the science to make them and give them to Jay.”

“Oh.”

“Hey, buddy?”

“What.”

“You don’t need everybody to agree for you to be who you are. You just need a few allies, people who believe in you and support you. Doesn’t matter everyone else thinks.”

And I kept reading to Butterbean, telling myself I could cry later.

Because even more painful than the fact that I’ll never see Jay again, can’t talk to him and can only see his kids in a new house without him, is the idea that for thousands of years of human existence, Jay would have had no idea he could be anyone else, would have had no way to become who he really needed to be. I can’t imagine living in a world like that, where Jay would have been and remained and felt wrong as Julie.

But I’ll bet in that world we would have been friends. Because Jay’s friendship wasn’t about gender, not when I met him and not when I found out about his transition. Or his pregnancy. Or his cancer.  Friendships aren’t usually about gender. Who Jay was for me is entirely defined by what kind of friend he was. And that wasn’t based on anatomy or hormone profile or what existed under his clothes. It was based on his heart.

I miss you, Jay.  And I don’t care whether you’re a Duke or a Duchess. I just really miss your kind heart.

 

 

Dancing on marbles

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Life is one big precarious attempt to not tumbling ass over teakettle, I am now convinced. And I’m trying to see the joy in the slapstick of walking boldly across a slick path made unpredictable with hundreds of marbles. Because every time I’m posed to post on this very spot about something lovely, I’m walloped upside the head with something decidedly unlovely.

And every time I want to wallow in the unlovely, something decidedly lovely distracts me.

You are likely aware, if you’ve been reading here for a while, that my gobsmackingly awesome children are finally starting to get along. Wise friends with three boys told me that once the little guy hit Four it would get better. And it has (with all the caveats about the fact that three people in the same house, none of whom has much emotional control, are rarely in the same mood and on the same page). Sometimes, now, when the first pats of butter-yellow light slip through their blinds and plop onto their beds each morning, Peanut and Butter wake up willing to engage in silly, playful interactions rather than surly, bickering nastiness. Sometimes. And that has increased the quality of life around here immeasurably.

Part of the boys’ getting along more probably roots in the fact that their Dad and I are being much calmer now that we’ve decided not to live together. Less struggle begets less struggle. So far. When there is tangible paternal-absence and marked maternal-lack-of-running-time, when the there might be a struggle or two. See the above metaphor about making steady progress along a marble-strewn path.

I’m sure that, in part, the boys’ kindness to one another stems from a fabulous trip to Boston. We walked the Charles, we spent our tourist dollars at Marathon Sports on Boylston. We ate good food (my GAWD I’ve missed Red Bones) and we practically lived on the T. We cheered for marathoners until we were hoarse. We even offered our fluffernutters to the many, many police working the course on Patriot’s Day. (One indignant Statie told me he already had his peanut butter with jelly, thank you. And then I believe he was fired for inMassabordination.) We spent time like a family, and it was good for everyone.

Part of the increased sibling harmony also stems from a deep sadness that has stilled my otherwise frenetic pace. The death of my friend has brought a rather large dollop of “I don’t care about anything any more” to my endless to-do lists and my frantic need to prove myself worthy through incessant activities.

As we made it through the memorial, we found out that a mutual friend, who was diagnosed with leukemia around the same time Jay had his first surgery, has relapsed. This little boy, who spent kindergarten in Children’s Hospital enduring rounds and rounds of chemo, and whose family learned a gratitude few of us will ever fathom, enjoyed first- and second-grade without cancer. Now his leukemia is back. He’s going through a couple of weeks of chemo before a bone marrow transplant.  We’re all trying coming together as a community, again, to get people checked, at no cost, to see if they’re matches for any of the many Americans in need of bone marrow. And maybe, if enough people get the free test, we can find our little guy a match!

So that’s exciting. If you’re one of the people who’s into bright sides and finding the joy of surfing the marble-covered path to tomorrow, it’s enlivening to have a purpose. To help. To appreciate and breathe and put one foot in front of the other. Nothing brings me out of “what’s the point” like a bone marrow drive.

Go hug your family. Email your friends and tell them you love them. Take a deep breath each morning, and relish what’s good.

And consider being tested to see if you’re a match for, and can help give a great life to, a sweet little boy.

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https://www.facebook.com/amatchforbay

 

How do you talk to a friend with cancer?

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I’ve found in the past few weeks that the fastest way to kill a blog is to post long, depressing content about a challenging houseguest.

So now I’ll revive my blog with everyone’s favorite topic: cancer!

I’ve pointed readers over the past year to my friend Jay’s blog to read about his amazing perspective and approach to life. And to parenting with cancer.

He posted his answer to a question: How do you talk to a friend with cancer?

Please read it. It might help with people in your life who is struggling. I hope none of them have stage IV cancer, but if they do, maybe discussing this will give you another reason to connect.

And if someone is struggling with another type of crisis, maybe his post will help you connect with them, too.

Because heaven knows we all , genuinely, need reasons to be human with each other.

Go read his post.

Issues little and big

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Week Two with a foreign exchange student was challenging. We’re settling into patterns, some good and some not so good. Our new friend is still excited to be here and is still marveling at things we take for granted, such as cars stopping at stop signs.

I’m still marveling at Spouse’s willingness to let me walk smack into a situation that does not suit me at all. I know full well that I’m dumb enough kind enough to offer our home to a stranger based on the recommendation of a good friend and the reassurance that it would be an amazing opportunity. But you’d think he would have, perhaps, guided me another way.

Well we have ourselves an opportunity and a half, right here in our house all summer.

And we only get out of it what we put in. So after reminding our guest for the fourth or fifth time that she really, really has to lock the doors, especially when she leaves the house, after giving in and letting her have all the white-bread-and-ketchup sandwiches she wants, and after deciding not to tell her about water conservation and drought in California, we found an evening on which to really connect.

As usual, I made a relatively plain meal. Well-seasoned lentils, israeli couscous with feta and olives, watermelon, and raw bell pepper. And she found it horrible, even after adding what I think might have been a quarter cup of salt. She went to her room to try on one after another of her outfits and to ask if they looked okay. In the lull after the nightly fashion show I read a blog post from my friend about how cancer is eating away his perspective and how he’s fighting to be present with his family.

So when Rosí came into the kitchen, instead of working, as I needed to, I joined her. And told her I have a friend who’s fighting cancer and has been for three years. She, in turn, told me about her grandfather, whose prostate cancer was misdiagnosed repeatedly even as her mother kept saying, “This is not right. Get another doctor.” The grandfather died two years later. We talked about cancer and about death. About how there are quite a few bad ways to go. She talked about HIV and the relative who died from complications from HIV-related conditions.

I mentioned that there was some hope with HIV as treatments are improving.

“Not in my country.” She told me that in the Dominican Republic the treatments were making almost no difference because successful HIV treatment requires, as she said, “paying attention and being willing to care about health.” That, she said, was not the way in her country.

She talked of the high cost of HIV medications. And of most life-saving medications. She talked of pervasive alcoholism in the DR. [World Health Organization stats suggest that her perspective is skewed by her town.] She said that in her neighborhood, many children walked the streets without shoes, without school, and without enough food because their parents drank what little money they had.

“So does it seem hopeless,” I asked, “with, as you say, many people using alcohol, and many people taking advantage of honest people by stealing and cheating?”

“No. You can never lose hope. My mother does not have a lot,” she said. “But she always made sure we have food and we go to school. No money for clothes? Maybe. But money for food. And she does it honestly. She doesn’t have a formal job but she does everything she can to earn money honestly. If we’re sick? Go to school. Not if we’re really ill, of course. But if we don’t feel well? Too bad. Go to school.”

“She knows what’s important.”

“Yes.”

I asked if it was hard to be honest and struggle when some give up and either drink or steal. It seems that is the struggle in many of the poorest parts of our country, as well.

“There is no choice,” she said. “There is no excuse for being dishonest. There is no reason. If you try hard, there is enough for food and school. Not for extras. But for food and school.”

As expected, I felt terrible about how we spend our money. I tell the kids we use money for food and shelter and heat and school and not for extras, but they have enough toys to say otherwise. And we have treats and new books and expensive coffee. I knew that guilt would come during our summer as American hosts.

But Rosí’s reminder about what’s really important brought me out of my deep sadness about my friend. People everywhere are struggling. Really struggling. He’s fighting with everything he has to make sure his family is loved. Rosí’s mom is sacrificing to ensure that her children have the necessities. They’re doing…we’re all doing…what it really takes to be good people.

Make sure kids are fed and educated. And loved.
Make sure family and friends know they’re important.
Lead by example an honest, hard-working, and purpose-filled life.
And give to others everything you can.

Well, then.

Take that, summer inconvenience.

 

 

One fine howdeedo

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Let me catch you up on the past 48 hours.

One of the best people on the planet, who has been fighting cancer and winning every time the catabolizing bastard raises its disgusting head, thinks it might be back.

The boys finally agreed to ditch their beds for a bunk bed. Little guy screams a lot at night, both in his sleep and wakefully needing my presence. Turns out the toddler bed was too small and when he kicked the walls of the former crib (that kid sleeps like the kung fu master in Shao Lin vs. Lama) it woke him up. Now in a bigger bed he just screams all his dreams in their entirety. Without waking up. “No! No! I said no! Go away! Mommy go to sleep!”  [I swear on all that’s true and good that was last night at 2am.]

In the process of putting together the bunk bed I had to disassemble that restrictive toddler bed. The one I put together as a crib seven and a half years ago, seven months pregnant with the biggest right turn my life has ever taken. My babies are really and truly gone, the last few hex screws said.

A dear, dear friend who has been with our family for every high and low for the past 30+ years died last night. I hope it was painless and I hope her wonderful friends heal knowing what a special friendship they shared. I have lots of treasured memories and photographs and I consider myself very lucky to have had her in my family’s life.

A member of the family rodentia has apparently chewed through our emergency box and has tasted everything but the bandaids.

Two friends have told me stories tonight about their friends dying and leaving small children behind. And one told a story about a child dying and leaving parents behind.

My eldest child, whom I adore and who drives me nuts at least 50% of the time, turns seven in a few days. First slumber party.

My youngest child, whom I adore and who drives me nuts at least 50% of the time, turns three in two weeks. First real party.

Syria is breaking my heart. North Korea is breaking my heart. The frogs, the bees, and the icebergs are breaking my heart. A solid percentage of Africa and Asia are breaking my heart.

The house needs to be cleaned, furniture moved, lunches made, food cooked, feelings stuffed down and ignored, others feelings fanned out for everyone and their cat to see.

What?! Oh, you know what I mean.

I know that this is what life looks like. Life, parties, fear, death, hope, constant low-level panic, love, really loud dreams, and rats.

And there’s only so much crying I can do. Because there are only so many ineffective, preschool-made bean-bag ice packs in the freezer. And a forty-year-old woman who averages 5 hours of sleep a night and two showers a week can’t possibly be seen wandering aimlessly through her day with puffy eyes.

Because if someone asks me what’s wrong, I’m going to tell them.

Life and death are what’s wrong.

Every day miracles for once in a lifetime

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Remember when I asked you to send your thoughts, prayers, and good vibes to my friend? I promised you an update on his battle.

Here’s an update, in his words.

Go read this post. I don’t bandy about hyperbole often, but it is a breathtaking story of heart and humanity.

Look, aphorisms are cheap and annoying. But genuinely good friendships are something into which to pour your every energy. Use whatever words you want but send to some lovin’ to your friends.

And, as you did when I wrote a weepy plea for your thoughts, send a little love to my friend.

Please.

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I don’t have much power in this world, but I need something. I don’t have fame or fortune or a huge readership, and I don’t know what to do. I need help.

I need your hope. Because I need my friend to be okay.

He’s been through enough. He’s had a whole lot of shitty thrown his way, and each time he’s bested it. He’s finally with the woman absolutely meant for him. He has three amazing kids. He has hundreds of friends because he’s a miraculously good person. The type who gets a raw deal time and time again (and again and again) yet still smiles and makes people feel that they’re special. Makes us laugh and cry and appreciate being alive.

The motherfucking cancer that tried to kill him didn’t. And he had one blissful year after the torture of chemo and radiation and surgery.

And that stupid fucking no good cancer is back.

I don’t really have the power to do anything, and, of course, it’s not about me. Except I hurt just hearing that he’s in pain. That he’s scared. That his family is upside fucking down with fear.

So I want to get every single person I can thinking good thoughts. I can turn the Universe, right? Heartfelt pleas for good thoughts mean something, right?

Pray if you do. Hope if you will. Send him some good wishes if you please. I know there are lurkers amongst you, those who come out when it’s important.

He desperately needs something, and I want to give everything I can. So please. Send him a few thoughts or prayers or wishes. Type him a few words, would you, even though you don’t know him. Please.

The world needs him.

What are we supposed to do?

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This is about more than just us.

Governments all over the world refuse to acknowledge that women are humans, citizens, people. In China they’re forcing abortions, in other countries they restricting and denying abortions (and punish women who manage to survive their illegal abortions). Women are systematically raped and tortured in the Congo. Human beings and animals are starving to death. Entire species of animals are disappearing, forever, at an alarming rate. A child starves to death every five seconds.  Anything edible or non-edible from China you put in your mouth might kill you. the world is in a massive financial crisis. Soldiers and civilians are dying from combat, and even more soldiers kill themselves, unable to wrestle with the complicated mental anguish that results from their service. We’re running out of water. We’re running out of food. We’re living on a planet increasingly rife with radioactive nuclear waste. Intense poverty is killing millions and millions of people struggling to survive in a world where a few have more than they need.

Name a disease. It’s a problem. Name a basic right you cherish. Other people don’t have it. Name something that makes you happy. Most people don’t get that. Name a basic need you had no problem meeting today. Most people don’t even have that.

So what are we supposed to do? That’s not rhetorical. That’s not me pointing you to a website that will solve all this. I’m paralyzed with the breadth and depth of the trouble around me and have no idea where to start.

And I became mired in this paralysis because my friend is on her way to the Democratic Republic of Congo to research the bonobo population there. [You know, the endangered chimpanzee species that is as close to human as any other species (uh-oh I just lost the ignorant “we ain’t no monkeys ‘cuz the world was built in 80 days” crowd…oh well).] And some people are giving her flak, saying that the human suffering on the planet is significant enough that she is wasting her impressive mind and indefatigible desire to help by working with “just” apes.

And my question is, is that what we’re going to bicker about? Not how best to help or how to start, but which cause to choose? Are you kidding me? Choose something, and go freaking make an effort to fix it.