Suicide as clickbait is stigma in action, starring XO Jane & Amanda Lauren Kass

So many other things I’d rather be writing about today (eg: my new puppy or Argo, the coolest road-worthy amphibious Canadian export ever). Instead, I’m writing a cautionary tale about the hazards of being good at other peoples’ lives.

There’s hardly anything easier. After all, who doesn’t know better than someone who hasn’t dealt directly with an issue exactly how best to deal with it, right?

Outside Experts, an Inside View

Back in 1990, when my ex and I split, the good news was that I had a full-time job. The bad news was that my title was “Mom” and the highest-level full-time job I’d had (and left years before) was in a bookstore.

Nonetheless, I waived child support and, after 18 months of receiving the maintenance I’d been promised for three years, took a tiny buyout. I had no job and little in the way of prospects. From my family’s point of view, I’d lost the lone coconut-flake sized-shred of sense I’d ever possessed.

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This is about as sensible as I get.

Decades later, after I’d lost track of how many times my mother, sister, aunts and bossy cousin (the men of the one-up generation were all dead by the mid-1980s) had leaned on me to “take that bastard to court,” Mom was still harping about what an idiot I’d been.

There were several reasons I opted out of chasing my ex around for money that I knew he’d never give me. There are tons of ways to shelter assets when you have your own business. He knew all the ones that existed (and several that probably didn’t). That was a big one.

My biggest and realest, though, to was become someone who didn’t have to. I had three daughters looking at me. I had to show them that you could make what you wanted to happen happen in life. Even when things get scary, as long as you don’t give up. Chasing my ex through the court system for what those women thought I was “owed” would have meant squandering the time and energy required to reach my goal.

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Why giving up was not an option.

What I didn’t know back then was this: That time and energy also consumed the awareness that it even needed explaining. Only now, as I write this, do I realize that some important friends along the way – who still mean the world to me – understood without any explanations. Their faith, belief and support made it possible for me to keep going in those moments when I wasn’t sure I could.

Gratitude aside, my main point here is how easy, when looking from the outside, it is for someone to judge another person’s life, choices and outcomes.

 

When Honesty is the Cruelest Policy

Which brings me to Amanda Lauren Kass, whose essay “My Former Friend’s Death Was a Blessing,” was published May 19th by XOJane. It’s a division of Time, Inc. that pays $50 for personal essays. (Writers get more when a post goes viral. The lack of a link is intentional.)

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This is in memory of Leah and her sister.

“Leah,” Kass’ former friend, died by suicide a few years after being diagnosed with schizoaffective disorder. Leah’s sister, a high school classmate of Kass, died of cancer at 19. You can read Kass’ account of Leah’s spiral here if you’d like. (XOjane took the piece down and put an apology in its place after a few days of leaving it up (you know, hits = $). (The hyperlink in this blog is to an archived page on the wayback machine.)

Or I can save you the trouble by riffing off another Time, Inc. publication, specifically “People,” for which I used to review books. At one point, we had to write “Bottom Lines,” one-sentence summations of our reviews. Here’s my Bottom Line-inspired summary of Kass’ essay.

“’Leah’s’ life looked hard and inconvenient so I fired her, made fun of her, judged her parents for not doing more – and her decision to die by suicide was totally the right one!”

Wiser and better heads than mine have written responses addressing Ms. Kass’ character and possible motivations for writing what she did, and the multiple ways of living a full and meaningful life with or without a mental health diagnosis.

 

Families suffer when the Ignorantatti go unchallenged

What I haven’t seen anyone write about is where Leah’s parents were in all this and why they weren’t more involved or helpful as their daughter spiraled deeper and deeper into what appears – based on Ms. Kass’s description – to have been depression and psychosis.

Ms. Kass calls them out in the story, and is (unsurprisingly) cruel and judgmental.

As a Family Educator for the National Alliance on Mental Illness since 2006, I have spent countless hours with family members who are terrified for their children, siblings, parents and friends. They’re also just plain terrified. Which is why they sign up for NAMI’s Family-to-Family class.

In three hour increments over 12 weeks, F2F provides information on what I have come to refer to as “the Big 7” (schizophrenia, bi-polar disorder, schizoaffective disorder, major depression, anxiety disorder, borderline personality disorder, obsessive-compulsive disorder). It also touches on post-traumatic stress disorder and how it and the other mental health conditions affect the daily lives of people living with them.

F2F also gives family members the information they need to take care of themselves,  ways they can effectively advocate for their ill family member or friend and a safe space. It’s powerful to see what happens to people when they get to tell their stories in a setting where the responses are nods of understanding instead of horrified stares. My favorite thing about teaching that course is watching people come in singly or in pairs and leave in groups.

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The NAMI Walk at our lakefront. Nationally, these happen all over the country. Every year there are more people and more dogs. (That’s me & Matey on the right. The lump in my pocket is a container of dog treats)

Ms. Kass’ bald cruelty is not unusual. That she wrote and published it might be, but for anyone wondering about stigma and mental illness, that essay is Exhibits A-F. It’s also a textbook example of the reason we in NAMI describe these illnesses as “no casserole.”

Leah’s parents can probably speak to this way more eloquently than I can, but I bet that when her sister had cancer, the community rallied around the family. I bet they brought meals, provided emotional support and anything else needed. Doctors were forthcoming with information about what was happening and kept the family in the loop regarding their daughter’s progress and disease course, even after she was 18.

Leah’s disease course was very different, and I’d lay money that the same people who helped when it was cancer scattered like vampires at dawn when Leah got sick. Because of HIPA (Health Information Privacy Act), her parents probably got no information about what was happening with her. Because they didn’t know, they weren’t able to find out about a diagnosis, what it meant, what medication she might need and whether or not she was taking it. They had no power to do anything other than watch her spiral. The only thing that would have made a difference was Leah signing a release form authorizing her parents to receive information. Which, based on my experience with other F2F parents, is extremely rare. Most people with psychotic illness tend to act out against the people closest to them and who know them best. It also tends to onset in early adulthood, just as people are striking out on their own and striving to be independent. Call it tragic, call it a confluence of clusterfuckery. It’s that and then some.

When I read Ms. Kass’ essay, it was Leah’s parents I thought of; Leah’s parents for whom I ached. I’m sure that piece pulled the scab right off the open wound that is their daughters’ deaths.

Ms. Kass recently got married. One day, she may hold a newborn in her arms. She and her husband will look into their baby’s face and imagine the firsts. They will want to give their child everything. They will wonder who and what this little person will grow to be.

On that day, I hope Amanda Kass remembers Leah, and her sister, and their parents.

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The baby grew up to be me. My dad, a rabbi who was beloved by his family and his congregation , died by suicide when I was 14. Its likely he had undiagnosed bi-polar disorder.   Stigma prevented him from getting the help that might have saved him. It also prevented my mother from feeling that she could be honest with my sister and me about what happened, and about our own family medical history. I was 25 & married with a child when I went hunting for the truth, because my daughter deserved a better answer than “I don’t know,” or “It was an accident,” when she got old enough to notice she was down a grandpa.

New Business, Writer’s Block and Preventing Newborn Ignorance, One Baby at a Time

 

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My grandson and his aunt, who was so amazing as a caregiver to her sister that for a second I kicked myself for not hiring her when I had kids. Then I remembered why I hadn’t….

I will confess to not being terribly distressed to slam the door on 2015. Between the job layoff, sending my best non-human  friend Tuki to the Rabbit Field in the Sky and my mother on a slow cruise to Dementia Island, it’s been – and continues to be – interesting times.

Still, there have been bright spots. I’ve got a fledgling dissertation and thesis-writing business, and recently signed an agreement I can’t talk about to do some writing-related work that looks to be fascinating and fulfilling. And I’m pushing myself to write chapters 6 through 13 of my book, which means dredging up things I’d rather leave in the personal history sewer. The good part is that I’ll be able to throw a good number of them back there. The bad part is I won’t know which ones until I look.

Also, three weeks ago I became a grandmother. It’s not something I’d ever imagined. Which wasn’t about vanity or thinking my offspring wouldn’t be fit parents. It was about watching my friends who couldn’t have or didn’t want kids being made miserable by parents and others who were pressuring them about where the babies were.

I had kids because I wanted them. Not everybody wants them, and I had no clue about where my offspring – or their prospective partners – would fall on that spectrum. So I never really thought much about being someone’s Bubby.

But here I am, with a  wee grandson. We’ve spent a little time together, and I’m getting to know him. He’s not doing much other than the usual top four newborn things (sleeping, eating, pooping and crying), but he’s starting to add a fifth thing, staring, to his repertoire. That means he’s getting more interested in things, and that makes him more interesting.

My chief duty so far has been making sure his mother and other caregivers are fed. (My first instinct in any crisis or celebration is to start catering.) But now that he’s starting to get curious, I’m trying to answer the questions he’s not yet able to ask.

So I’m giving him tours around his house, explaining what things are (“This is a stove where food gets cooked. The top gets very hot and you don’t want to touch it then.” “These things in frames are artwork. Art is very important and good for your soul.”) and telling him about different things (“President Obama is trying to make it so assault rifles aren’t so available, which is good news.”) going on in the world.

There’s nothing sadder than a newborn who isn’t up on current events, after all.

 

 

 

Travels with Mom: a trip to the Neurologist

So, yesterday I took Mom to the neurologist.

She’s been having more of these spells where one minute she’s fine, and the next she’s crumpling up like a boneless doll. They’re not pretty. The nurse practitioner at the nursing home where she lives thought it might be the Parkinson’s disease progressing, so we moved her April neurology appointment to yesterday.

When I showed up – after a stop at our current favorite Thai restaurant for the fresh rolls and sushi she’d requested – she was waiting for me with her coat on, but instead of using her walker, she was sitting in a wheelchair.

“Where’s your walker?” I said.

She looked at me the way she does when she doesn’t want to say the wrong thing. It’s not a fun thing to see. The mother I used to have would have said what was on her mind without hesitation.

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A picture of Mom and me during our 2011 “From Massachusetts to Flyover Country” road trip.

“We always use the wheelchair when we take her off the unit now,” Jennifer said. She’s one of the nurses at the Home. She’s tiny, efficient and delightful. “We always use it for any distances, if she’s going to Temple or an activity off the floor.”

For the past month or so, we’ve mostly been hanging out in Mom’s room, so this was news, although it made sense. I was just trying to figure out where to leave the wheelchair when we got to the car, the logistics of getting one at the hospital where her appointment was, and then doing the whole thing on the trip back.

When Jennifer explained that it was a travel wheelchair that would fold and I could take it along, I felt better. So, off we set. I had to get her to a standing position when we got outside and help her fall, more or less, into the front seat. She has a disc that rotates – kind of like a lazy Susan for your butt – on the seat, so I was able to lift her legs and swing them into the car once she sat down. But she ends up sprawled into the passenger space, legs on the floor, her back not touching the backrest and her head kind of aimed at the ceiling. It looks as uncomfortable as Mom has assured me it feels. So then there’s the part where I direct her, (“Put your weight on your feet and push yourself back in the seat. You can do it, Mom. You can! …Good….good….you’ve got it…you’ve got it….yes!”)

Then I buckle her seat belt and get the walker (or in this case, wheelchair) into the car, and off we go. It used to be that I’d pick her up early and we’d go out for lunch. Picking up “to go” and eating at the hospital seemed like a smarter idea this time. But I was reconsidering even that. She seemed half asleep. Then she said something.

“What?” I asked.

“You know Lou,” she said. Lou is one of the women at the nursing home. Her granddaughter and Alex were playmates when they were small.

“What about her?” I said.

“Her parents were coming to pick her up and take her out today.”

Lou is 94. This was not good.

“Her kids, you mean,” I said.

“No,” Mom said. “Her parents.”

This went on for a couple of rounds. Mom is not usually this kind of dotty, so it took awhile to sink in that my mother didn’t think there was anything out of the ordinary about a 94-year-old woman’s parents driving to the nursing home to pick up their daughter who has dementia in order to drive her back to their house for a visit.

I did a bit more checking, and sure enough, Mom was totally cool with the whole 112-year-old parents thing. (That’s assuming they were 18 when Lou was born, of course, which they probably were not. They were probably older, probably closer to 118.) So I dropped the subject and thanked whatever deity there is out there that we were on our way to see the neurologist.

We got on the highway. I kept my eyes on the road, except when I was checking on Mom. Who did not look like she should be going anywhere, unless it was bed.

“Help me.”

The words came out in barely a whisper.

“What?”

“Help me.”

“What do you need me to do?”

“I don’t know.”

I didn’t know either. I was just glad we were on our way to a doctor. It took us about 15 minutes to go 10 miles. It took another 20 to go 1,000 feet from the hospital driveway turn-in to the drop-off point where we could ditch the car and enter the building.

Mom spent that time probably regretting having been such a good role model for road rage. Worry and hunger do not bring out my best self.  We had left a comfortable time cushion for getting to the appointment. But it was supposed to have been for lunch-eating purposes, not being cast in “Hospital Apron Traffic Jam, the Reality Show from Hell.”

Cut to: the exam room. I tried to get Mom to eat. She wouldn’t. I tried to get her to drink. She wouldn’t. I was hungry. I ate. I was thirsty. I drank. Dr. B came in. She asked Mom about her trip to Canada in June. I showed her photos and a video of Mom walking down the aisle at Alex & Tevie’s wedding.

She asked about what was going on. We told her. She read the contents of the envelope the nursing home had sent. She tested Mom’s strength. It was good. Then she took Mom’s blood pressure. It was low. She said that it was a simple fix, and would account for the weakness and the weirdness.

“If there’s no blood going to your brain,” she said, “You’re gonna be dopey.”

Dr. B said she would call the nurse practitioner at the Home and have a conversation about the blood pressure issues. She also told Mom that she needs to eat and drink, and asked us to come back in three months.

Mom looked a lot more alive than she had when we’d come in.

“That was good news,” she said. I agreed. I handed her the fresh roll she wouldn’t eat before.

I wheeled her to a place near the door but not outside, and went to get the car. When the valet parking guy said it would take about ½ hour to get the car, I told him I was going to take Mom for a coffee while we waited.

We chatted on our way down to the café, and when we got into the dining room, a work colleague was sitting at a table by herself. Melanie teaches nursing at the tech school where I work. She was visiting a friend at the hospital. We sat together. I introduced her to Mom, and we talked about the appointment, what had happened, about nursing homes, about getting older and exchanged a little work gossip. Mom was more animated than I’d seen her in ages. She even ate all of her sushi, which hardly ever happens.

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Mom, eating her last piece of California roll, because Melanie told her how happy she was seeing Mom enjoy it so much.

On the way back, I told her how upsetting it was to have someone ask for help and be in such visible distress and not know what to do to make it better. I asked her what she was experiencing in those moments, and what I could do.

“I don’t know,” she said.

We’ve talked previously about quality of life issues, and I asked her if she was getting to a point where that was starting to matter. She told me that mostly, it isn’t. We agreed that the best thing in the world would be to die peacefully in your sleep, either during a nap or during the night. We talked about what would happen if that didn’t happen, who would be with her, and how we would do things.

Then, we made plans to go see an exhibit at the Jewish Museum this weekend. When we got back to the her room, I showed her – with no small amount of trepidation – the post I wrote last week about my dad and breasts.

I watched her read it. It felt like it took as long as the hospital apron traffic jam had (it didn’t).

She liked it.

‘I’m not big on long goodbyes’ or Death at Christmas

Like most working people in the US, where Christian culture is majority culture, I’d been looking forward to a couple of days off at Christmas.

It’s not my holiday. But I get to partake of its best parts because Sweetheart’s family is a mashup of Lutherans, atheists who grew up as Lutherans & Catholics-by-choice. Sweetheart was nine when his parents split. From that point on, it was Christmas Eve with Mom and Christmas Day with Dad. That’s carried into adulthood, except now Dad is at the Mom celebration and Mom comes to Dad’s brunch. They’re what it looks like when you decide to stop letting the past get in the way of the present and learn new ways to be kind.

It makes those big life transitions so much easier. When First Husband died, Better Wife than I’d Been called me right away. (Unexpected, as BW adored FH and loved my children, but not so much me. I was fine with that – she didn’t have to be nice to me as long as she was good to them.) Together, we got the six combined kids (three apiece, ranging from 19-29) through that terrible time. At that point, I hadn’t spoken with First Husband’s father Sidney for about five years. But BW’s father was dying, and she’d just been widowed for the second time. She had her hands full. So I started calling Sidney every week to check up on him and let him know how his granddaughters were faring.

I was particularly worried because of Mrs. Sidney – I’ll call her Barbara. He’d married Barbara within a year of FH’s mother’s death when FH was 15. She had never warmed to Sidney’s children, and didn’t share his level of anguish. She wasn’t crazy for me either, but time passed. Things changed.

We’ve had lots of breakfasts and dinners together, a couple of Passover Seders (one that included BW & her family) and those weekly calls.

Mrs. Sidney and Sidney. This photo was taken in April.
Mrs. Sidney and Sidney (z”l). This photo was taken in April. The (z”l) is a Hebrew abbreviation for a phrase that translates in English to “of blessed memory.”

I’ve seen Sidney go downhill steadily since First Husband’s death.

This past June, he pulled Barbara down as she was trying to help him up after another of his increasingly frequent falls. Doctors diagnosed a brain tumor. They gave him two to six months. Barbara, who doesn’t drive anymore, found a nursing home nearby. She visited a couple of times a week and wondered aloud more than once what, if anything, either of them was getting out of those visits. My mother is in a nursing home here, and I see lonely people with no or infrequent visitors. It’s not pretty. I had a hard time understanding the way she was dealing with things until the day she told me she’d never seen anyone die before.

She’d never seen anyone die before?

She’s in her mid-80s. I feel very lucky to have seen people die. It’s made me much less anxious about the whole process.

Now, Sidney has given two of his granddaughters that gift.

The youngest, Talia, is a 27-year-old undergrad who works as a nanny. She lives about two hours from the nursing home. Since June, she’s been there every week when she’s not in school and every other week when she is.

On Tuesday, the evening before my first day of Christmas break, she called me at 9 p.m.

“Has anyone told you what’s going on with Grandpa?”

“Ummm…..no. What’s going on with Grandpa?”

“I’m in his room. He’s dying. Barbara called to tell me they said she needs to have a CNA in his room 24/7, so I told her to tell them I was coming down,” she said. Then she said something I knew she hadn’t told Barbara.

“There’s no way I’m going to let Grandpa die alone with a stranger in his room.”

I live a scant hour and a half from Sidney’s nursing home.

“Do you want me to come down?”

She burst into tears.

“Oh, Mommy! Would you?”

I would.

When I got there, he was actively dying (unconscious and in a state of possible semi-awareness). He was also agitated. I rousted the nursing staff when I found out that his last dose of morphine had been about two hours before.

I had Talia call Former Sister-In-Law, who was in from Texas and had taken off from her job to be there. (All I could think was – Lord, please don’t let him die with me in the room and NOT her). SIL and her lifelong best friend arrived at about 11:30. By 5 a.m., when they left to nap and shower before returning later in the day, Talia’s sisters had flights. Alex was coming in at 1 p.m. and Liza, who’d just seen him a week before, would arrive the next night.

Barbara showed up at about 8:45. The Hospice Nurse was there and told her she might want to tell him that it was okay for him to go.

She sat by him. She took his hand and said, “You’ll be in a better place, and we will all be okay.”

Then we went out for breakfast. She offered to split the bill. I didn’t let her.

I dropped her back at her place for a hair appointment (she lives in one of those all-inclusive assisted living complexes), hit up the grocery store for some provisions (a box of clementines, some grapefruit soda, a green plant) and headed back with food. Talia ate the to-go breakfast I’d gotten her and took off to fetch Alex from the airport.

We were alone for a bit.

I told Sidney that we’d all be okay and I’d keep up the weekly calls to Barbara. I played my guitalele and sang a bit for him, and then Vicky the Hospice Nurse, who turned out to have a great voice, showed up. We harmonized on songs we couldn’t remember the words to and told Sidney we were worth every penny he was paying us.

I also told him that for a man whose stock lines included “I’m not big on long goodbyes,” he sure seemed to be stretching this one out.

Then, I remembered that I had Mandy Patinkin singing Yiddish songs on my iPad (Sidney was a big fan of Yiddish songs). So I put that on for him. Alex & Talia arrived, then Cathy. When my daughter-in-law Abbi showed up a little after 3, it was okay – better in fact – for me to head out. The room wasn’t that big and at that point I was just extra baggage.

I sat beside him. I gave him a kiss.

“I’m not big on long goodbyes,” I told him.

Then, I made my way back to Milwaukee, exhausted but just in time for Christmas Eve with the in-laws.

Talia called at 8 to tell me Sidney had died, with Alex and Talia each holding one of his hands, Cathy with her hands on his head and Abbi sitting nearby.

Old mothers, bad daughters, & therapeutic books

I have an old mother and an old dog. My dog lives with me. My mother lives in a nursing home four miles away, and I am her Primary Person.

In the abstract, being Mom’s main person is a huge honor and I know full well how lucky I am to still have her. In reality, I’ve turned into a short-tempered bitch who alternates between hating myself for being the worst daughter on the planet and being angry at my mother for being so unreasonable.

The truth is that there simply are not enough hours in a day – or a week – to give my best at work, home, to my writing, my dog, my Sweetheart, my music, my exercise routine, my friends and Mom. Who, since moving to live near me, has become a combination of the best parts of the mother I have always known and someone I’ve never met before.

Parkinson’s disease was not part of her life plan. The Cape Cod condo she bought in 1984 was supposed to be her last stop before joining Dad in the cemetery.

“I want to be carried out of here feet first,” she’d say when mortality was the topic of conversation.

She had no interest in being cared for by offspring. (“I don’t need anything from you and I don’t want to live with you. Go live your own lives. I have long-term care insurance.”)

I have vivid memories of nursing home visits to elderly relatives with 50-something Mom (“Just give me pills if I’m ever like that”).

When my grandmother became too old to live by herself, Mom and her sisters were militant about keeping her out of a nursing home. They took turns having her live with them. Bubby spent four months a year on Cape Cod, four months in California and four in Florida. Mom only had one rule.

“You are not allowed to die on my watch.”

I have not made rules for Mom. It seems irrelevant (although Bubby did die in California with my Aunt Freda, so I could be wrong). It also seems kind of cruel, given how her plans to grow old worked out.

In a lot of ways, we’re lucky. As nursing homes go, she’s in one of the best. Her unit is single rooms around a communal living area. There’s been virtually no staff turnover in the time she’s been there, and I’m on a first-name basis with most of her caregivers. They are wonderful people who do a difficult job well. I talk to Mom daily and see her several times a week. Sweetheart and I bring in take-out and we also take her out when she’s up for it.

My sister, who lives 1, 400 miles (2250 km) away, comes about three times a year. Debby takes Mom to lunch. They go shopping and play word games. Debby has infinite patience with Mom. She has also learned to be patient with me, her ranting sister.

It’s been a growth experience.

Neurosis and guilt are baked into our DNA, so it’s been a challenge for Debby to wrap her mind around the notion that when I call ranting, I’m not beating her up for not being here. I just need to vent to someone who has as much of a stake in this as I do. Someone who understands how hard and terrifying and overwhelming it is. Someone who gets just how infuriating it is to try and be patient with the mother who regularly engages in behavior for which she would – and sometimes did – slap you into next week as you were growing up.

Thanksgiving was Thursday. Mom was here. Wednesday, I was there. Friday I was there. Saturday I was there. Today I really wanted to just stay home. So when Mom called this morning to tell me she had a hangnail and that she really needed prunes (which, trust me, they buy in pallets over there), I was sweet and kind. Then I hung up the phone and called my sister, screaming.

“Unwrap the Hanukkah present I got you,” she said. “You need it now.”

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The Hanukkah present Debby got me. (Now someone needs to send me something else to unwrap.)

She wasn’t kidding. It might not make everything about our Mom situation easier, but Roz Chast’s graphic memoir “Can’t We Talk about Something More Pleasant” is making me laugh at the same time it’s making me feel a lot less alone.

You don’t have to be in our situation to fall in love with this book. I’m sharing a link that will let you locate the library copy closest to where you are. No need to thank me.

But if you insist, just make yourself available for the occasional rant.