Hello, Seekers!

It's been quite a long time since Your Humble Hostess has written on this here blog.  If the truth be told, I have had little inclination to write about the things I used to.  Grief is exhausting, and leaves little room in the soul for ranting about politics.  It's not that I don't care anymore, it's that I ranted into the wilderness for the better part of a decade, and where did it get us?

Those of you who are my Facebook friends know that I haven't been silent.  But between the Job That Ate My Life, a bad case of Widow Brain that has left me virtually unable to concentrate on the impossible project I've been handed at my job, and the emotional struggle of feeling neither here nor there as I prepare to take a leap of faith, ditch it all, buy health insurance on whatever is left of the health care exchanges after the GOP and Supreme Court get through with them, sell my house, pack up the cats and head south to North Carolina, where frankly, they need my vote desperately.

Shortly after Mr. Brilliant died, I had set up a new blog called Don't Call Me a Widow.  Oh, I was fine, yes indeedy I was.  None of that grief stuff that my mother had done for twelve years for me, nosirree.  I had dinner with friends at restaurants that Mr. B. didn't like.  I cooked things he would never eat.  To be honest, it was a relief for a short time to have it all over with and to not have to be the recipient of someone's frustrated rage at being ill and disappointed.

That lasted about six months.

Two weeks after Mr. B's death, I joined a Meetup for widows and widowers.  I met several very cool women, and professed my I'm-just-fineness.  The woman who runs the group, who lost her husband at 42 from lung cancer, patted me on the back and said, "Oh, honey, you're still numb.  It hasn't hit you yet."

But at about six months, it did.

For lo these twenty months now, I've been going nonstop.  Until recently, when my job role changed and I began reporting to someone in Germany, where they have a workers council and take their 40 hour weeks very seriously, I continued to work 50, 60, 70 hours a week.  I went out.  I had a lot of remodeling done in the house.  I went to Italy with friends.  This spring I went to Prague for work.  I got rid of a ton of stuff, donating and freecycling as much as I could.  Now I'm prepping the house to sell so I can head south.  If I've been given this blank slate on which to write a new start, it can't be in a place where a mere trip to the dentist is full of "We used to buy crumb cake here" and "Remember when we lived here and had parties?" and "Remember how good the chow fun was here?" and just too damn many memories.  I moved to Bergen County, NJ to be with Mr. Brilliant and even though I've been here 32 years, it just doesn't feel like I belong here anymore.

It's not that life is so bad.  It's not even that I'm lonely.  I've always been able to enjoy my own company.  It's just that I've become an impostor in my own life.

I don't know what the future holds.  I'm toying with the idea of writing a book about this whole experience.  I might start a blog about being a Tarheel transplant.  I might finish my Great Sweeping Novel.  Or something else.

I don't know if anyone even still reads this blog, which is kind of sad after all these years.  But things change.  Life changes.  And then we're gone.  The question for me now, not to get all Gandalf on you, is to decide what to do with the time that has been given to me.

Labels: personal musings

Time goes much faster when you get older. Both winters and summers seem shorter (this past winter notwithstanding). Every time you turn around, you're having another birthday. At 12:10 PM today it will be exactly six months since Mr. Brilliant took his last breath.

It's going to be 60 degrees out today here in New Jersey, and while there have been blizzards in April before, it does look like this horrible winter of 2013-2014 is finally over. The crocuses have been eaten by the bunnies (who are as big as Buicks this year) and the hyacinths are starting to come up. It's mostly sunny, breezy, and while there's still a touch of winter in the air, it's clear that spring has finally arrived.

Mr. B. used to love this first week of April. For all that his pagan soul should have celebrated the Vernal Equinox as the first day of spring, the eternal baseball fan in him knew that Opening Day was really when spring began. He never really got over his winter funk until the beginning of May, but at least with the arrival of baseball, balmy days were definitely within reach. This week is doubly poignant because Game of Thrones' fourth season starts tomorrow night and there's a marathon of the first three seasons on HBO2 this weekend. If he were here, he'd be sitting and watching all day, with the windows thrown open, enjoying both the dark universe of Westeros and the light at the end of the dark tunnel that is winter in New Jersey.

Other things are different too. The little cat sitting on the windowsill is now named Sammy, and he's grey instead of white, Maggie having left to join her dad on January 28. Eli, the soulful bi-color cat who joined us after Jenny died last summer and is now a tenuous link to that life that is no longer mine, is in the Jenny-spot on the sofa. He's adjusted just fine, especially after I got him a new friend whom he can groom and cuddle.

At first I was sure I would be all right. I had family visiting for the first two weeks. I started jettisoning junk almost immediately. Mr. B. had wanted his guitar and bass to go to Mike the Vet Tech in appreciation for how much he loved Maggie, never knowing just how much Mike would help in Maggie's final weeks. He had left instructions for some of his spiritual stuff to be sent to his longtime friend in St. Louis. I worked in the man-cave for about three weeks, holding everything from CDs and books to outright trash in my hands, waiting for them to either speak to me (keep) or not (toss). I took bags of trash to the dump. I had a garage sale. I donated clothes. Friends kept me so busy with dinners out that I was rarely at home. I went back to work after a week. I joined a social group for widows and widowers, whereupon I was told at the first meeting that I was still numb, that it hadn't hit me yet. I scoffed at that. I was strong and I would not be like my mother, playing the newly bereaved widow for the next decade.

And then Maggie died and the grief hit. Hard. Because when the vet took Maggie's still, lifeless little body out the door, the last real tie to that old life was gone. Ever since then I've felt like a fraud. Oh, I go through the motions. I go to work, where everyone thinks I am doing great. Some of them, who had let me rant when Mr. B. would lash out at me, or forget to do things he needed to do, or was just irritating, no doubt thought I was doing too well, that I had to be HAPPY that he was gone. I lied at work about how he died, telling most people it was cardiac arrest while in the ICU, because I didn't want a repeat of the scene last March when one colleague, upon hearing about his bladder cancer diagnosis and knowing that the last five years or so had been difficult, said "Well this must make you happy." No one who hasn't been in a marriage for over a quarter of a century really gets that you can sit in the car screaming with frustration, you can sit and crunch numbers to see how badly you'd get clobbered financially if you left, you can wonder how on earth you can be with this person one more day, let alone the rest of your life, and still love that person with a ferocity that you don't even know you have until there's a threat to him and you go into Tiger Wife mode.

Because what no one who listened to me bitch about how I could never rely on him holding down a job, or helping out around the house, or remembering to do things I needed him to do -- all annoyances that may very well have, unbeknownst to either of us at the time, been due to what was happening inside his brain -- understands is that I would have taken him anywhere in the world, seen any doctor, spent every penny left to me by my mother, to make him well -- even if that meant more futile job searches and coping by playing Windows Solitaire for hours on end. Because when you have that kind of a bond, the thought of doing anything else is unthinkable.It's a bond that transcends how you may feel on any given day or week, or even those times when you feel like a caged bird, trapped in your own life. You forget that it's there during those times, but then catastrophe hits and you remember why you were there in the first place, what brought you to this place thirty years later and you know that your place is with that person, come what may.

There's a scene in the movie One True Thing, where Meryl Streep's character is telling Renee Zellweger's why she put up with her philandering husband. I've never forgotten this scene because even if you are not dealing with a philanderer and even if you don't have kids, this scene describes perfectly what it's about when you have been with someone a long time. Unfortunately, I can't find a clip of this part of the scene, so here's the text from the screenplay:

You make concessions when you're married a long time...that you don't believe you'll make when you're beginning. When you're young, you say, "Oh, I'll never tolerate...this or that or the other thing. But time goes by, darling. And when you've slept together a thousand nights...and you've smelled like spit-up from the babies when they're sick...and you've seen your body droop and get soft...and some nights you just think, "Oh, God, I'm not gonna put up with it another minute".

But you wake up in the next morning...and the kitchen smells like coffee...and the kids have their hair brushed all by themselves...and you look at your husband, and no...he's not the person you thought he was. But he's your life. And the kids and the house and everything that you do is built around him.

And that's your life. That's your history too. And if you take him out, that's like cutting his face out of all the pictures. It just makes a big hole and it ruins everything.

So you rant to your friends and you send e-mails and you crunch the numbers because it helps you get through those bad times. But you know in your heart that you are in it for the long haul. And when the long haul comes, you're amazed at how easy it is to rise to the occasion...and how much you WANT to.

Between the numbness' end and the arrival of the Grief Monster is the "woulda shoulda coulda" phase. This is where you re-live those last few weeks over and over and over again. I should have called his neurosurgeon on our anniversary when his incision site looked bruised and his speech was slurring and his hands were shaking, and if he got angry with me for doing it, he'd have to suck it up and deal. I should have insisted that we send his scans to Dr. Gary Steinberg at Stanford, who is the ONE real go-to guy for moyamoya in the entire country, even though he wanted to stay with his team at Sloan-Kettering and Weill-Cornell. I should never have gone home to strip the bed in an effort to save the mattress and stayed with him until they got him into his room in the ICU at Valley Hospital. I should have remembered to take the Movado watch I bought him off his wrist so someone on staff there wouldn't have stolen it en route. I should have read up on what seizures following a stroke meant, so that when they kept saying they had to find the right dose of anti-seizure meds I would have known what status epilepticus was and screamed at them to intubate and sedate earlier. I should have called Dr. Chess Club as many times as I needed to feel reassured, because Mr. B. was deteriorating every hour and I knew by Sunday night that whatever they were doing at Death Valley Hospital wasn't working. I should have talked to him more after he was moved to Weill Cornell even though he didn't hear me.

For months I played that tape over and over and over in my head trying to find the point at which doing something different would have changed the outcome. Finally, I was able to put it together that the alternative scripts involved either a) weeks, months, or possibly years in a nursing home with a trache and PEG, neither fully alive nor dead; b) weeks or months in a nursing home with a trache and PEG followed by learning how to walk, speak, feed himself -- and not having had his chemoradiation for months; or c) painful death from bladder cancer, probably within five years under the BEST of circumstances. Once I got to that point, I was able to stop the second-guessing.

But as I've written before, it's as if the earth is off its axis. My world is wobbling and it takes every effort I have to keep it from tumbling out of control. It's spring in New Jersey. It's a time of change...of rebirth and renewal. Soon the Christians will celebrate a resurrection. The kids will eat Cadbury cream eggs and not think about the Easter symbols' pagan origins. The sweaters will be put away and the brightly-colored tops will come out. For me it's a time of change and renewal too. I just don't know yet what that change is going to look like. I met Mr. Brilliant towards the end of the first third of my life. We were together for the second third. And I'm still trying to find a balance between a sense of loss and one of anticipation for this last third.

Labels: personal musings

So yesterday we heard that our esteemed governor, Chris Christie, had been completely exonerated of any wrongdoing by lawyers who are his political allies, that he paid for with a million dollars of New Jersey taxpayer money. What a surprise. What was at least a little surprising, was the misogynistic viciousness of the report, which blamed the closing of local lanes to the George Washington Bridge last September on Alex Forrest Bridget Kelly, as some sort of irrational, psychotic payback to her alleged former lover, Christie ally Bill Stepien. Or something. And then there's Hoboken mayor Dawn Zimmer, painted by the report as a delusional liar.

Hey 57% of women who voted for this thug last November -- how do you feel about him now?

I've been wanting to move to North Carolina for years. It's not that I love the climate, Goddess knows I don't. But I've been tired of New Jersey for a long time. The road rage. The traffic. The potholes. The big hair and chewing gum and the lack of realization that the characters on "The Sopranos" were NOT people you were supposed to want to emulate. People who say "Down the shore." Springsteen and his ersatz Woody Guthrie schtick composed in his bigass house in Rumson. I've lived here since 1958, and I've had enough.

Back in 2005, I survived a layoff where I was working. In a way, it was the worst thing that could have happened to me. Mr. B. was unemployed at the time, it was the top of the housing market, and we could have sold the house and headed south without looking back. But I did survive, and then he got a job, and so we stayed. He never really wanted to go anyway. He always refused to believe me when I came home from my sister's and talked about all the geeky aging hippies down there who thought the way we did, and about the venues that had more of the music we like than New York City had, and how yes, you could get good Indian food in Durham. He just could never get past Jesse Helms. Now granted, we'd be moving to the Triangle, not to the areas where they still marry their sisters, but even that area was still represented by Jesse Helms.

It's not that it's so much better now, especially since 2010, when disappointed Obama voters stayed home in droves, allowing a wingnut contingent that makes the teabaggers look sane to take over the statehouse in Raleigh and the governorship. They've enacted one of the most restrictive voter registration laws in the country, tried to enact a law that would allow the state to establish a state religion, and introduced legislation to ban making scientific predictions of sea level rise. Governor Pat McCrory is a puppet of Duke Energy. The state is a workshop for the worst kind of retrograde legislation, to the point that a once-hot destination for high-tech companies is in danger of becoming another Alabama.

But not if Moral Mondays has anything to say about it.

Whether the Moral Monday movement, which started in North Carolina but has spread to Atlanta, can be effective or if it is just another bunch of white progressives marching with signs, remains to be seen. If there's a place where even bad Democrats are better than any Republican, it's in North Carolina, where another four years of wingnut rule could very well turn North Carolina into another polluted, ignorant southern cesspool. Maybe the state needs me.

Or maybe I'm just looking for an excuse.

Because right now I feel like an alien in my own life and in my own house. When Mr. B. was here I used to say that the time before I met him felt like someone else's life. Now the thirty years I spent with him feel like someone else's life, and I am trespassing on it. The Job That Ate My Life, the house that's now eighteen years into the five-year remodeling plan and still needs another $40,000 worth of work just to get it ready to sell -- none of it feel like mine anymore. The man-cave still has a fair amount of Mr. B's effluvia in it -- the stuff I didn't donate or toss when I was still numb enough to do it. Nine suits in 42L and 44L waiting to be donated. Dressers that are falling apart and need to be dragged downstairs and put out for pickup day. Three boxes of comic books that need to be triaged to see what's worth selling and what is just junk. Records. CDs. Bits of a life now gone for good. The upstairs bedroom has a bed frame but no bed, the bed having been carted away by ServPro as hazmat nearly five months ago. His size 13 sneakers are still in the hall. In the linen closet are a dozen sand-color towels to be donated because when I have the upstairs bathroom done, it won't go with sand-color towels. So much stuff from a life that is now compleely alien to me. And that's why I feel the pull -- to get off this insane merry-go-round of impossible deadlines and office politics and 7-day work weeks, to head south and find a place that doesn't have three unused rooms -- maybe a house with a front porch and a screened porch in back and a deck and pine trees and a shed where I can set up a commercial kitchen and make 20 flavors of granola to sell. To set up a widows/widowers meetup group for old hippies. To sleep more than five hours a night. To stop and smell the flowers. To breathe. To live.

Because one thing I've learned is that none of us knows what tomorrow will bring. When I stood at my mother's graveside in December of 2012 with Mr. B. at my side, I could not have fathomed that less than a year later he would be gone too. I look through the boxes of photos that I still haven't organized from my mother's house and get smacked in the face at how many of the people in them are gone. Mom. Lionel. Generations of pets. Mr. B. And those of us still left aren't getting any younger. In a way it's a relief that when I'm gone, they can just light a bonfire and burn the whole mess if they want to. Because after a generation or two, who remembers who is whom in family photos? And after that, who even cares? All we have is now. I want to have some contentment in my now. Because EVERYTHING in life is only for now.



Power-mad thugs like Chris Christie should think about this.

Labels: Chris Christie, personal musings, wingnuttia

"We have a pure white cat, would you like to see her?"

The shelter manager didn't even have to ask. December 2000 had been a horrible month. I started a new job. Our cat Oliver, who had been battling cardiomyopathy and congestive heart failure for a year, had gone into kidney failure and we'd said goodbye to him on the 10th. On the 14th I had gone to Maine for what turned out to be my last visit with my mother's husband, who had been like a second father to me. Upon my return, I started a new job. Mr. Brilliant got let go from his job at a petroleum brokerage just days after the Supreme Court installed George W. Bush as President. We had adopted Jenny on December 24, but she had taken up residence under a recliner in our home office, and stayed there for three months. Lionel had died on December 30, and our other cat, Wendy, had gone into kidney failure about the same time. On January 2, 2001, Mr. Brilliant had to dig the car out of the snow from the day before to take her to be euthanized. I couldn't go because I was still new on my job.

We'd just come from the no-kill shelter, where we'd both fallen in love with a little bi-color cow-kitty -- a little female -- who had turned out to be on hold for someone else. I will never forget how Mr. B. crumpled into a heap on the floor, sobbing. Wendy had been extremely bonded with him, Jenny was cowered under a chair, he was out of work, and really needed a kitty. He'd wanted to just go home, where I knew he would spend the rest of the day crying and smoking too many cigarettes, so I insisted we go to the county shelter.

She was the most adorable thing we'd ever seen. She was seventeen months old, pure white, and talkative. It took us maybe a minute and a half that we wanted her.

She was also extremely weird. Since she was quarantined in the house with an upper respiratory infection for a week, we would lie on the bed in the afternoon all weekend, just looking at her, lying on her back and kneading the air. "Liquid Alien Space Kitty", we called her. We'd pick her up and she'd go limp. Her eyes were rimmed with pink. She looked vaguely fetal, as if she were a cupcake that had been taken out of the oven too soon. Like most cats, she named herself, and she decided her name was Maggie.

Maggie was the neediest cat I ever had. "Someone's getting petted and it's not Maggie!", we would joke. If Mr. B. and I were hugging, Maggie wanted a piece of the action. We used to do "group hug", with Maggie in the middle. She always wanted a lap to sit on. She clearly had some Siamese in her, because she was quite vociferous about what she wanted. And then there was nighttime, when she insisted that I sleep facing her, so she could rest her head on my neck. "You can be replaced by a good night's sleep!", I would say to her, knowing full well that someday I would regret those words. I got out of bed at 5 AM every single day that I was home, because that's how Maggie wanted it.

Everyone who met Maggie was won over by her. She had a huge personality. She was a true diva, albeit one with a comical streak. She made me laugh, she warmed my heart, she drove me crazy. And I was nuts about her. But poor thing, she spent twelve years wanting Jenny to love her, and Jenny just wouldn't do it. Jenny, a very reserved and ladylike cat, had no patience with this demanding, yowling overgrown kitten, and took it out on her regularly.

After Jenny died, and we brought Eli home, the introduction took only a little over a week, and soon they were best friends.

Maggie became hyperthyroid in April of 2012, and that fall, she stopped eating. She'd nibble a bit, but Maggie had always been a chow hound. She got thinner and thinner while I bought fancy grain-free tuna cat food and made chicken with broth, in a vain attempt to tempt her. I had to go to North Carolina because my mother had gone into the hospital, and when I got back Maggie was so thin she could hardly stand. That night I sat in the basement, wailing my heart out because Maggie was dying and I didn't know why.

After trying every kind of food imaginable, our vet decided she should have an ultrasound, which showed that she either had Inflammatory Bowel Disease or a gastric lymphoma. We decided to do a crapshoot and treat her with prednisolone to bet that it was IBD and hope we were right. We started her on transdermal prednisolone and she didn't get much better. Somehow we got a call from the vet that had done the ultrasound. He had a special interest in IBD and said to hit it hard with the prednisolone for a week -- double the dose, then taper it down.

And lo and behold, Maggie started eating. And "the ultrasound guy" became Amazing Miracle Vet. And Maggie and Mike the Vet Tech fell in love.

On December 16, 2013, I went to work. Maggie had been a bit off her food that morning, but nothing serious. She'd had a few flareups of the IBD over the last year, but three days of double-dose prednisolone usually did the trick. I made a mental note to double her up when I got home.

When I arrived home, she didn't greet me. I went looking for her and found her on the bed, her eyes stuck shut. I rushed her to the emergency vet, who diagnosed an upper respiratory infection, gave her an antibiotic shot, and gave me eye drops to give her. The eye drops helped a bit, but then her eyes got worse. Her sinus congestion became worse. I kept a vaporizer going all day but nothing helped her breathe. I took her back to the emergency vet hospital and they decided she should see the ophthalmologist, who prescribed famciclovir and gave me ointment to put into her eyes. She fought both of these meds mightily. I then took a morning off from work and took her to Amazing Miracle Vet, who gave her fluids, cleaned her eyes, gave her a B12 shot, and sent her home. And for a day she was better.

This went on for a month, as I spent hundreds upon hundreds of dollars trying to find a way to heal her. Amazing Miracle Vet and her regular vet had a falling-out, and her regular vet (who had obviously gone from integrative medicine to 100% alternative), put her on homeopathics to boost her immune system. She was already on L-Lysine, which wasn't doing a thing. From December 16 on, she mostly lived on the bed, rallying only occasionally. I hired Mike the Vet Tech to come in the evening and administer her meds because I couldn't do it myself. She got worse. Her ears became full of crud and she shook rocks of green gunk out of them, crying out as she did. Her eyes were crusty and no matter how many warm compresses I put on them, I couldn't soften what was there. She developed an angry red sore on her right ear that crusted over and then flaked, leaving angry raw skin behind. I noticed how difficult it was for her to walk. I assumed it was because she was old, it was cold out, and she hadn't moved much -- and then I noticed the ulcers on her paws -- all four of them. I decided to get a second opinion. They took blood, They did an ultrasound. They kept her there for an hour and a half. They couldn't make heads or tails of the ears and the skin condition on her paws, but decided she should go back on the antivirals. I had Mike the Vet Tech coming in the evenings, and found another certified tech who could come mornings. I began to have a glimmer of hope for my poor, pain-racked kitty, who slept most of the time now. I'd been bringing her plates of food and feeding her on the bed for a month. I'd held the water bowl so she could drink without having to lower her head. This was my last shot at saving her.

The young vet tech I'd planned to hire for mornings came to meet Maggie, took one look at her, and said "That looks like pemphigus." I'd heard about this from my sister, whose dog had it at one point. I looked it up on Google Images, and was already certain that's what it was. The tech suggested I bring Maggie to the veterinary office where she works.

I have a photo of Maggie from that time, but I won't post it here because it's too upsetting. She was in so much pain and she was so miserable. One eye was drooping, and she would look at me as if begging me to make it stop. So here I was, not even four months out from having to make the gut-wrenching decision to take Mr. Brilliant off the ventilator, and her was my beloved Maggie, the last real tie to my old life -- and I had to decide what was the right thing to do. And I couldn't do it.

I was exhausted. The numbness of losing Mr. B. had started to wear off. My whole life was consumed with work and caring for a very ill cat. Meanwhile, my other cat, Eli, who we'd adopted after Jenny died, was clearly in distress. I wanted to make Maggie well. I'd have done anything to make her well. I was willing to pay fifty bucks a day to vet techs to administer meds. I was willing to do a medical boarding if it would make her well. I was living the end-of-life nightmare with Maggie that the fates had spared Mr. B. when he had a stroke instead of a long, drawn-out death from bladder cancer. Early on it felt that I was fated to do this kind of care and I saw it as a calling. But now it was turning into a dejà vu nightmare. I felt as if I was the Angel of Death. I felt like some kind of monster. I had to be sure that whatever I did was for Maggie and not for me. If I kept treating her, it had to be because she could be made well, not because I could not bear to let her go. If I decided to let her go, it had to be because it was the right thing to do FOR HER, not because I was utterly spent. I needed someone to give me guidance; not to tell me what to do, but to help me make the right decision.

Vets will never do this. They know how hard it is to say goodbye, and they would never make that decision for anyone. But this one did. He felt that we were either looking at a very severe autoimmune disease or a very aggressive skin cancer. The only possible treatment was high doses of steroids, but Maggie was already on 7.5mg prednisolone every other day for the IBD -- and she still had these sores that were spreading now to her other ear, her nose, under her eyes, and her anus. The kind of doses that would be required would likely result in diabetes or liver failure. He said that given that she was fifteen years old, and that she was already being treated for two underlying diseases, and with the risks of high steroid doses, that euthanasia would "not be an unreasonable decision."

NOW I knew what I had to do. So once again, here I was, making a life-or-death decision for the SECOND most important being in my household. I took Maggie home and put her to bed. I called the house call vet, who agreed to come out the next day. And on January 29, Maggie left us. She left quietly, peacefully, on a soft furry throw, on the bed where she'd draped her head over my neck and purred on so many nights for thirteen years.

After they took her away, I collapsed on the floor, screaming. This went on for about twenty minutes. I didn't even cry like this when Mr. B. died. It isn't that I loved Maggie more than I did Mr. B., though the love we have for our pets is far less complicated. But when Mr. B. died, there were things that had to be taken care of. When he died I was numb. Now the floodgates opened, and I went into a tailspin -- a tailspin that has been waiting to happen since my mother died in December 2012, and since Mr. B. first went to the urologist on March 6, was diagnosed later that month. It's been waiting to happen through Mr. B's chemotherapy, and Jenny's death and Mr. B's hospitalization in July, through his moyamoya diagnosis and brain surgery and stroke and death in October. Loss upon loss upon loss -- all those losses after which people would ask me, "How are you still standing?" Right now, I don't feel like I'm standing. The floodgates have opened, and all the "strength" people told me I had back in October has left me.

All this grief funnelled into a little white cat seems disproportionate. Yes, I have cried for Maggie every single night since January 29. But it's not just about Maggie. I've cried for the loss of a life that was mine for nearly three decades; for Mr. B. and for Wendy and Oliver and Jenny and Maggie. I've cried for a past that's gone forever, a life that hummed along like a well-made toaster that is now gone forever, replaced with a present that demands these nightly purges of grief and a future that has choices and opportunities but that is also a bit scary because if I should wake up after having had a stroke the way Mr. B. did on September 22, 2013, there'll be no one there to call 911. I've cried for the waste that is the death of Philip Seymour Hoffman and the loss of Harold Ramis' grin. I've cried for the reality that we never know what could happen to us, especially once we are north of 50 and our famous peers start to drop like flies. I've cried because I simply cannot fathom where the time has gone. I've cried for all the times I yelled at Maggie and felt resentful of Mr. B. in those years when he struggled to find work and hang onto it when he had it. I've cried for years that have disappeared and aren't coming back.

I miss that life. It wasn't always great but I miss it. I've been too busy working to make the kind of new life that I want to. I go out with friends. I've joined a social group for widows and widowers. In this horrible winter I've spent too many evenings at home because of the weather, but I have started to build something new. But I still miss what is no longer here.

I hope that somewhere Maggie is sitting on Mr. B's lap, wrapped up in his blue velour bathrobe. I hope Jenny is right there next to him, purring. But what I know for sure is that I am still here.

And I miss my "family".

Labels: cat blogging, personal musings

It seems that everyone has an opinion on the tragic story of Jahi McMath.

For those who haven't heard about this yet, Jahi McMath is a 13-year-old who underwent what was supposed to be a routine tonsillectomy at Children's Hospital in Oakland, California. After surgery, she went into cardiac arrest after coughing up blood and has been declared brain-dead by the hospital. Jahi's family does not believe that she is dead and has been fighting to keep her on life support. There were earlier reports that a facility in New York has been found that is willing to take her, but more recent reports simply say that the family is trying to find a facility. If they do, Jahi needs to have a tracheostomy and percutaneous endoscopic gastrostomy (PEG, or feeding tube into the abdomen) before she can be transported. The hospital is refusing to perform this procedure because they regard Jahi as dead and legally they have no obligation to perform procedures on a dead person. There is at this point no outside physician set up to come in and do this, and it's questionable whether any physician would even be willing to. Of course the usual assortment of ghouls has come out of the woodwork, with a foundation dedicated to the memory of Terri Schiavo working with the McMath family.

Back when the Schiavo case was all over the news, to the point of federal involvement by officials smelling Christofascist Zombie Brigade votes, I too thought the case was cut-and-dried, that Schiavo was indeed brain-dead and that there should not be an issue here. I still do. But I no longer regard people as stupid who believe that their loved ones who are on ventilators are still present in their bodies. I no longer regard them as stupid or deluded because I've now been there. I've now seen it. I now know what it's like to see the person you love open his eyes and at first you think he's looking at you but there just seems to be nothing going on behind the eyes. You don't know if he's seeing you, if he knows you're there, if he feels you massaging his feet that are so swollen they feel like massaging wax, if he hears you tell him that if he will just wake up you will take him to the Grand Canyon and fly first-class, if he hears the music you play on your iPad on his pillow. You don't know until they shine a light in his eyes and stick a Q-tip in his nose and into the back of his throat and he doesn't blink or sneeze or gag -- and even then you don't know because hey, he opened his eyes, didn't he? I now know what it's like when the nurses turn the person who used to thrash so much during the night that being in the same bed with him was like being on a storm-tossed sea. I now know what it's like to see your spouse open his eyes after they take the ventilator off and run out of the room yelling at the nurses that they promised he would be sedated and comfortable -- and have them tell you it's just a reflex.

I know what it's like to sit in a room full of doctors and patient advocates and other members of hospital officialdom a week after he should have awakened and two days after the neurosurgeon you still trust said that he doesn't think it's time yet to talk about options, that he thinks your husband will still wake up. I know what it's like to be given four options as to what to do now that your husband's brain has shown that it simply cannot handle the withdrawal of even one of the four anti-seizure medications they have been pumping into him without going into seizures, only now it's seizures on BOTH sides of the brain, not just the left. Yes, Mr. Brilliant had an advance directive that made clear that if I agreed to have him trached-and-PEG-ed and moved to a rehab facility, and he ever woke up (which was doubtful) and had to re-learn how to walk and talk and feed himself, that he'd be really, really pissed. But that doesn't make it one bit easier to say "He would not want to live this way" and make him "withdrawal of care", as the hospitals call it. The only thing the advance directive does is keep you from being in this limbo of hoping for a miracle.

I also know what it's like to second-guess yourself endlessly, especially after seeing things like this, which seem to reproach you for not doing whatever you would have had to do in order to get a reluctant patient to the emergency room and taunt you about someone whose spouse DID get her to the ER and she recovered from a stroke. The second-guessing is horrible, and I will probably do it forever -- playing that Saturday over and over and over again and wishing I'd called Dr. Chess Club as soon as Mr. B's speech started to slur instead of being weary and not fighting his refusal because for months he'd been getting angry with me and lashing out every time I reminded (or nagged, if you prefer) him to drink water for hydration, or noticed something that wasn't quite right -- and wondering afterward, after seeing things like this if that would have made a difference.

So I really can't judge Jahi McMath's family for refusing to believe that their daughter is gone. Her chest moves up and down with each breath, even if that breath is being accomplished with a ventilator. Maybe Jahi's eyes are opening too, only her family doesn't work on oncology trials and doesn't know enough to be the pain in the ass that I was. They see her eyes open and they see her "breathe" and they simply cannot fathom that while the lights may be on, there's nobody home in there.

I was lucky, as odd as that sounds. I dealt with doctors who were empathetic and caring and really "got" what my dilemma was and how much I wanted to balance hope with Mr. B's wishes. They knew the mental anguish I was going through and tried to do everything possible to give me the medical information I needed in order to try to put my mind at ease -- not that anything would have worked, but I give them credit for trying. There are things I wish they had done differently, of course; I wish Dr. Chess Club had emphasized that Mr. B. was still at risk of stroke and and about what symptoms to be vigilant. I wish a hospice nurse had been there at the end and that it had been better explained to me what to expect after the ventilator had been removed. But no one is perfect, and no one called Mr. B. a corpse or a dead person the way Children's Hospital is being with the McMath family. Bedside manner matters. Even when critical care physicans have to detach because if they got emotional over every patient where something goes wrong, they'd go nuts in short order, the illusion of caring matters. The doctors at Big Prestigious Hospital may or may not have actually cared, but they at least gave the illusion that they did. It appears that the doctors at Children's Hospital aren't doing that, and they are reaping the consequences.

I'm not sure one ever recovers from having to make that choice, to sign those papers, to make the affirmative decision to "let go." I don't know if I ever will. Yes, Jahi McMath is probably dead. But not so long ago she was a happy 13-year-old girl with hopes and dreams and giggles; just the way Mr. B. went from putting his resume back on the job boards and looking forward to a nice Thanksgiving dinner to celebrate the end of his cancer treatments and recovery from two brain surgeries to lying unknowing in a bed in an intensive care unit with tubes coming out of every orifice in his body. It's hard to wrap your mind around that. I had an advance directive and kind and caring physicians and a good support structure and enough understanding of medical terminology to provide a road map to the right decision, even if I do still second-guess myself. The McMath doesn't seem to have any of that. So I can't judge them, even if I think they are wrong.

Labels: end of life care, medicine, personal musings

Friends are friends, but when push comes to shove, your family is your family.

My sister and I were estranged for decades. It wasn't her fault at all, it was all mine. I resented my sister for years. I resented her because she was the pretty one, the musical one, the talented one, and I was nothing but the funny one. Now funny is something that can stay with you forever, but when you are eight years old, or ten, or twelve, or twenty-two, and you have been told your whole life that you are NOT pretty, you are cute and funny -- and it's made clear that cute and funny are definitely NOT as valuable as pretty, it's easy to get sucked into a vortex of anger and resentment. After all, who WOULDN'T be besotted with a child like my sister? She WAS pretty, and photogenic, and musically talented, whereas I was just this weird kid who preferred to stay in my room alone and make dollhouse furniture out of construction paper than be outside with neighborhood kids who were just going to tease me for being weird anyway.

It was never about anything my sister ever did. Try as I might, I have no memories of her ever being anything but nice to me. The only photographs of my early childhood where I'm smiling are the ones where I'm with her. So I'm not sure exactly when the resentment came about.

I remember her comforting me in her car the night before her first wedding while I sobbed uncontrollably. I was wretched because the guy I was dating would not make a commitment, and here she was getting married, and in my mind it was all because she was prettier than I was and things just seemed through my warped eyes to come so EASILY to her. What a selfish thing to do, to make the night before your sister's wedding all about YOU -- and yet that's what I did to the sister who hitchhiked home from college in Indiana to see me in my high school play.

Many years later, when my mother's husband became ill, Lynn tiptoed gingerly back into the family fold, for she had been estranged from our mother for years as well. It was then that the long journey towards reconciliation began. It hasn't always been easy. I will always have a lot of guilt about how I hated her all those years for no reason other than thinking that if I just disliked her enough, that our mother would make ME the favorite. And she still has issues with a lot of what I did. But we've been talking it all out for over a decade now, and when Mr. Brilliant was diagnosed with cancer in March, she immediately stepped up to the plate to help -- to make phone calls, to find resources for help, and to just be there.

That Lynn has been willing to forgive and forget has been the greatest gift I have ever or will ever receive.

And so, when I read about Liz Cheney throwing her lesbian sister Mary under the bus as part of her cynical run for Senate in Wyoming, I felt sick to my stomach. It's one thing for an unhappy child whose mother was already sunken deep into depression by the time she was born to hate her prettier sister who appeared to a child's eyes to be the favorite. It's quite another for a middle-aged adult to be willing to sacrifice this most precious bond in order to garner votes from a bunch of ignorant yahoos in the name of political power. When you're even more soulless and heartless than Dick Cheney, that's really saying something.

Mary Cheney's marriage is not a bargaining chip, nor is it an opinion about which intelligent people of goodwill can disagree. What Mary Cheney has is a family -- as much a family as yours and arguably more of a family than mine was in my formative years. That anyone can even think of not ferociously defending a sister with whom is supposedly close as part of politics makes Liz Cheney a particularly vile sort of ghoul -- one that makes the father-without-a-pulse who spawned her look like Mother Teresa by comparison.

I know it is bad juju to wish ill on other people, but I find myself hoping that if Liz Cheney is ever in the situation I was, with a sick husband and a high-pressure job, exhausted and scared and not knowing where to turn, that HER sister says, "Sorry, honey, but you're on your own." It would be no more than she deserves.

As for my sister? Thank you, Lynn, for being my rock and for your forgiveness. I love you, Sissy.

Labels: family values, gay marriage, Liz Cheney, personal musings

Kind readers, I have neglected you horribly lo these many weeks as I adjust to this new normal, which oftentimes feels not much different from the old normal, except it doesn't involve daily treks to doctors and trying to keep a very ill person from becoming angry. I am doing better than I expected to, and far better than many people in my situation, largely because I have been the one who ran the household all these years and I had a pre-existing base of friends that were not part of couples who have stepped up to the plate to the point that my social life has been nothing short of ridiculous the last few weeks.

We had a lovely memorial party for Mr. Brilliant at our beloved Dog House Saloon and Grill, where the kitchen turned dish after dish after dish of ziti, chicken parmagiana, amazing meatballs, two kinds of chicken wings, potato skins with cheese, zucchini sticks, breaded mushrooms, salad, bread, and just when you thought it was over, sliders. About 40 people showed up and the whole thing left me so verklempt that I agreed when it was all over that yeah, a potluck party at my house to have people come over and help me paint the erstwhile man-cave was a swell idea. The guitar and bass have found a new home with Mike the Vet Tech Who Loves Our Maggie, just as Mr. B. had wanted. We had a garage sale last weekend that generated about $300 to donate to Weill-Cornell Brain and Spine Center. Unfortunately, there is not a whole lot of moyamoya research going on, because MMD is one of those "rare diseases" that get no attention and there are treatments that when patients ACTUALLY TAKE CARE OF THEMSELVES work very well.

I have been wrestling with that OTHER "W" word, which I have refused to adopt as something that defines me. I was my own person before and am still my own person. I have gone to groups of the Walking Wounded and so far I feel about as much like I have anything in common with some of these Very Sad People, some of whom are years into this process, as I did with most of my peers in high school, that is to say not much. Yes, I have the brain fog, and there are those nasty crying jags that happen every time I drive past the local hospital where they botched his care, or on the way to work, or in the middle of Trader Joe's. But I am usually able to control them. I wrestle daily with "woulda-shoulda-coulda", with continued rage at Mr. B. for his refusal to drink a fucking glass of water a few times a day, with survivor's guilt and second-guessing myself. But this too shall pass.

One result is that I have just not had the energy to care a whole lot about what's going on in the world. I have a lot of thoughts about the ACA debacle, but I'm still not coherent enough to speak intelligently. So please bear with me a while longer. Right now I am planning to come back.

Labels: personal musings

I heard this gorgeous song on Pandora today and have been pretty much a mess the rest of the day. Antoine Dufour, Song for Stephen:



I am probably going to spin off further posts about this new life I'm trying to live into a different blog. It may be public, it may be by invitation. I'll let you all know if I decide to make it by invitation only and you'll be able to request and invitation. But I think that further episodes of the Deeply Personal don't really belong here.

I've gone back to work this week. I think it's good for me, it gets me back to something that passes for normal, it eliminates that irrational raw gnawing fear that they'll forget I work there, and it gets me back into the land of the living. My colleagues have been wonderful. This bunch that balks at gift cards for our administrative assistants raised $420 for the Ramapo-Bergen Animal Refuge, FOCAS, and the Bladder Cancer Advocacy Network. I've been pretty much OK this week until I heard the song posted above. Sure, I get a bit weepy, especially when I get home after work, but all things considered I've been OK. But tonight I was driving home and a massive wave of grief just washed over me just as I was getting on 287 north and it was as if the words I WILL NEVER SEE HIM AGAIN were written in fire on a two-by-four that was delivered soundly to the bakc of my skull.

It's a grief tinged with rage, because in a moment of madness last night I decided to listen to some of the recordings I made of medical appointments we went to. In a way, having these recordings make Mr. B. seem not quite so gone because his voice is still there. But it also underscores that concept of "NEVER". Where the rage comes in is just how often the word "hydration" appears, no matter who is talking -- Dr. Chess Club talked about hydration. Dr. Endearingly Nerdy Brain Doctor talked about hydration. The radiotherapy nurse talked about hydration. The oncologist talked about hydration. Hydration hydration hydration, and Mr. B. simply would not do it. In his last few conscious days, he developed a hankering for tomato juice, and went through two 64-ounce bottles in three days; probably 4-5 bottles during that last week. I argued with him that this was not hydration, but he insisted that he was allowed to have juice, and after thirty years, I knew that the more I dug in my heels the more tomato juice he would drink. It is a thing you guys seem to always do and it makes us nuts. So tonight the crying jags are not just about the grief that's really starting to hit now, but they also have an element of YOU DUMBASS...IF YOU HAD JUST HAD SOME GODDAMN WATER YOU'D STILL BE HERE.

I hate this.

Labels: dumbassery, grief, moyamoya, nothing is certain except death and taxes, personal musings

And it wasn't even the bladder cancer.

Mr. Brilliant suffered a very small stroke two weeks ago today. He even said it was small. "I seem to have suffered a small stroke," he said in words that were barely intelligible. It didn't seem all that small, given that he could hardly speak and his left arm was twitching. "I don't seem able to control my left arm." He seemed confused and loopy, but also able to think clearly. "I think your thoughts are OK, you're just having trouble pronouncing words, is that right?" I asked. "Yes," he said.

I called the ambulance to take him to the hospital. He started having seizures before we even left the house. Unfortunately, the EMTs have to take you to the nearest hospital, which is how he ended up at Valley Hospital instead of Hackensack University Medical Center. In the emergency room, they cleaned him up, did the same bedside neuro test that he had passed with flying colors just weeks earlier, only this time he was able to pass none of it. "M...o...y..a...m...o...y...a", he tried to explain. He was given Ativan and Keppra to try and stop the seizures and admitted to the neurology ICU.

Where they proceeded to let him seize for thirty-six hours, titrating the meds and telling me they had to do that to find the right dose.

By Monday night I was hysterical. I called Dr. Chess Club's office and he called back within 15 minutes, horrified that they had let him seize for so long. He explained to me about status epilepticus, which is a state of constant seizure, and told me to call the covering neurologist and say that he MUST be intubated and sedated to knock down the seizures before anyone turns in for the night. I will not relate anything else about my dealings with Valley Hospital right now, but Dr. Chess Club also felt that he would be more comfortable if Mr. B. was transported and under his care, at which point I began feeling more relief already.

It took all day on Tuesday the 24th to get a bed at Big Prestigious Hospital and the transport, but by late night, he had been moved, and I heaved a huge sigh of relief.

The plan was to keep him sedated for a few days to let his brain rest, then take him off sedation and make sure he's not still having seizures. The expectation was that he would gradually wake up, and then they could gradually withdraw the anti-seizure drugs.

On Friday the 27th the sedation was withdrawn. At 1:10 PM on Sunday the 29th, I was sitting in his room by the window, using the sill as a desk for my laptop. Suddenly I saw a yellow balloon bobbing right outside my window. Then it started wafting up, up, and away. There was no reason for a yellow balloon to be there outside a 2nd floor window of a hospital sitting on an overpass over the FDR Drive. But there it was. On September 30 he opened his eyes. There was no way to tell if he was actually in there. It seemed to me that he was, but now I am not sure. I went home for two medical appointments of my own, then back in to camp out in a chair in his room all night, because I wanted to be there as he started to emerge from the sedation. On October 1, no one was really sure of how conscious he was. Dr. Chess Club came in and said that he was not convinced the Versed had worn off. He said we are not there yet in terms of having to deal with decisions, and he was still hopeful we wouldn't get there.

By Wednesday, October 2, it was becoming clear that he was not coming out of it. They withdrew one of the seizure meds, and at my request, we had a meeting in the afternoon to discuss Mr. B's advance directive. The short-term plan was to try to withdraw the anti-seizure meds and see if he would go into seizure. They suggested I take a day off an not come in, since for 8 days straight I had left the house at 5 AM to get there by 6:30 and beat the traffic, worked an 8 hour day by the windowsill including teleconferences, and then driven home at rush hour -- and I was exhausted. I think they were not all that hopeful by that point and did not want me to see him go back into seizure, which he did, on Thursday night, after all the depakote had been flushed from his system.

On Friday, October 4, he broke into seizures on BOTH sides while the ICU team was examining him, and this time THEY requested the family meeting. By now I knew full well what was coming.

They offered me 4 options for long-term plan going forward:

1. Continue the same plan of medicating for seizures and support for breathing and nutrition, with resuscitation.

2. DNR but continue the same plan for medication, breathing and nutrition.

3. DNR with no escalation of care - no tests, no MRIs, no infusions.

4. DNR and withdrawal of care - use morphine drip and continue medicating for seizures.

Options 1 and 2 required tracheostomy and feeding tube in the stomach.

Option 3 could result in blood clots, pneumonia, other infections.

So there was really no option other than #4. No way did Mr. B. want a trach and direct feeding tube...and there was no sign that he would ever be able to stop seizing no matter how long we let his brain rest on Versed, which they put him back on when he started seizing.

So Saturday we went in. I have never felt so utterly awful in my life. I knew in my head that Mr. B. the person -- the guy who joked about wanting to be stuffed and propped in the corner after death as a constant reminder of our marriage, the guy who liked the Grateful Dead and Miles Davis and kung-fu and comic book movies -- was already gone; perhaps gone with that yellow balloon on Sunday. But it's one thing to know that what lies in the bed is by now just a shell holding him back from whatever is next for him. It's quite another to know that when the ventilator is removed from your spouse, he will die; to go into the room after it is removed and watch him, swollen with edema, still with hiccups from chemotherapy, nearly bald, with a healing EDAS scar, covered in bruises from needle sticks and IVs, open his eyes briefly in a reflex action. It was barely 20 minutes after they removed the ventilator that he stopped breathing. It is so upsetting just to type that again, because I can never un-see what I saw and what I had to experience. I don't wish that on anyone, and I hope none of you ever have to make that decision or stand by while it happens.

After he was gone, one of the ICU doctors told me that the results of his MRI from the day before showed multiple strokes all over his brain, as if his entire head -- all those little weak moyamoya vessels -- were exploding at once. There really was no other choice I could have made that would have been anything other than torment.

Mr. B. had always said he was not afraid of death, but he was terribly afraid of dying. At some point I will regard it as a blessing, that he got the end he wanted -- unconscious and painless and gentle, instead of the horror that is slow painful death from bladder cancer. But we were together for thirty years, lived together for twenty-nine, and had celebrated our twenty-seventh wedding anniversary just the evening before his stroke. I cannot bring myself to believe that he's gone. I go upstairs and there are all his clothes and his CDs and the size-13 sneakers that we always called Bozo shoes. There's the chair he sat in while he smoked, and his guitar and bass and his tech books. And when I think that never again will someone come downstairs and say, "Good morning, sweetie"; never again will I need to call home to tell someone I'm on my way home from work; that I will never, ever see him again, I feel like I don't know how I will go on. And yet I will go on, and make a life, because I have to. Because life is just too short not to. I just wish his wasn't as short as it was.

Note: Thanks to everyone on the medical teams at Memorial Sloan-Kettering Institute and New York Presbyterian/Weill Cornell that treated Mr. B. over the last six months and who tried mightily to restore him to health. These are some of the brightest, most caring, dedicated people I have ever met:

• Dr. Jonathan Rosenberg
• Dr. Bernard Bochner
• Dr. Han Xiao
• Dr. Preeti Parhar
• Dr. Igor Gavrilovic
• Dr. Babak Navi
• Dr. Jared Knopman
• Dr. Daniel Lahm
• Dr. Fowaz Al-Mufti
• Dr. Baxter Allen
• Dr. Benjamin Rapoport
• The chemotherapy nurses at Memorial Sloan-Kettering Cancer Center in Basking Ridge, NJ
• The nurses and all the staff in the Neurosciences Intensive Care Unit at NYP/Weill-Cornell

Labels: grief, moyamoya, nothing is certain except death and taxes, personal musings

I don't mean to turn this blog into a personal diary, but Mr. Brilliant's medical saga is starting to have more twists and turns than the roller coaster at Coney Island. Sometime during the night on Saturday, Mr. B. suffered a stroke. I am heading out now to Abercrombie and Neurosurgery Medical Center, where I hope Mr. B. is now, after Dr. Chess Club, a.k.a. a real-life Superman, and his real life Angel of Mercy, managed to get him sprung him from Klown Kar Hospital here in NJ, where an impaired but still with us on Sunday Mr. B. turned into an unresponsive person whacked out on three seizure meds with aspiration pneumonia. As of 9:30 last night he had still not arrived, but I'm assuming that if he didn't, they'd have called me.

I'll write more about this saga later, probably with somewhat less humor than last time, but right now I'm hoping that whoever takes out his breathing tube when they bring him out of sedation is under the expert eye of Spicoli the Anesthesiologist so Mr. B. doesn't freak out. At least I got to sleep a few hours last night without wailing. That might have woken the neighbors.

(Go to Part IV)

Labels: moyamoya, personal musings

I'd like to be able to tell you that I'll be back here on a regular basis. The traffic stats tell me that regular updates are needed, and as bang-up a job as jurassicpork does during my frequent absences, he can't do all the heavy lifting alone. Besides, I think I bring a somewhat lighter touch to the outrage. This is no knock on JP, but rather, a reflection of thousands of years of Jewish history, during which we learned to laugh even at the biggest crises because it's the only way we can get through the day. Even now, my stock answer to "How are you doing?" is "Compared to what?" Yes, there are days when I can hardly get out of bed. There are nights when I beg the Goddess to let me die in my sleep. But on the 95% of days when I'm functioning more or less normally, if I can make someone laugh, it's been a good day. Sometimes little things are all you've got.

So maybe I'm back, at least a bit more often. Or not. But please stay tuned; we're not going away, and since July 2014 will be our tenth blogiversary and so many have called it quits lately (most notably Pam and TBogg) or died (most notably, and sadly, Doghouse Riley), or moved on to Facebook or Twitter, where the demands are for only five minutes of your time to appear to be "engaged in the world around you", I think it's important for us relatively old-timers to keep on chugging away. I've made too many good friends, both in virtual and meat worlds, to let it all go in favor of 140 characters. Call me a Luddite, I don't care.

I do first want to thank some people who have been my absolute rock during these troubled times. What's left of my family have been wonderful. Special mention goes to my amazing sister, who having emerged from a decade of dealing with our impossible mother and a year of absolute hell with her during her final decline, has stood steadfastly by me, arranging visiting nurses when necessary, listening to me as I sit in the car screaming, being on call 24 x 7 when I need her, and all this on top of settling our mother's affairs, including getting rid of an incredible amount of STUFF from the house, remodeling it from the ground up to sell -- and all this while running a business. To my friend and neighbor Maryann, whose containers of meatballs, sausage and peppers, and eggplant parm, as well as her insistence on getting me out of the house for nice dinners have helped keep me sane. To our other neighbor John, who has kindly offered to drive Mr. Brilliant to Big Cancer Center on chemo days so that I can return to the office, because in the middle of a reorganization, you don't want them to forget you work there. My manager, who loads me up with an impossible amount of work but has trusted me enough to put in a full work week, even here and there, so that I haven't had to take family leave. Melina, who is just always THERE and always offers a haven of refuge if I just need to get away for a day or two. Special mention to The Wifely Person, who doesn't know me from a hole in the wall, but has been on this spousal cancer journey and stepped right in, checking in every week without fail to see how I'm doing and just being there and offering friendship when I desperately needed someone who gets it. The wonderful people at the BCAN community, especially Jon N. who also doesn't know me OR Mr. Brilliant, but is fighting his own brave battle with the bladder cancer beast while only in his thirties, but still finds time to also check in weekly. And oddly enough, to Mike Bridavsky, who brought his internet rock star kitteh, Lil BUB, to Ridgewood, New Jersey for a book signing so I got to experience some BUB magic first-hand. I do not know what it is with this strange little cat, but I do have to say that no matter how bad my day is, a photo or video of this magical creature always helps. And since meeting Lil BUB in "person", I really have felt better.

Mr. B. continues to do well. I think he still has a couple of stitches left behind that we will need to take care of, but his scar is hardly visible. He has some supposedly temporary paralysis of one of the muscles that controls his right eyebrow, which gives him a rakish perpetually skeptical look -- sort of a one-sided Colbert. He's having some side effects from the radiation but nothing terrible up to this point. In early November, Dr. Chess Club will work his magic on the left side, which probably won't be as comical because we know now what to expect, but if it is funny, you'll hear about it. Then it's just follow-ups and hope the beast stays away.

Anyway, while my world has been pretty small, the rest of it keeps on turning...

Betty Cracker is pragmatic...but is she right?

The great Charlie Pierce on The Things They Will Not Allow.

Here's the difference between Us and Them: Even though we have been fortunate enough to have top-notch care for Mr. Brilliant's illnesses, not everyone does, and that's an outrage. Obtaining health care for those who do not have access to Big Prestigious Hospitals is becoming more difficult. Alison Kilkenny on how New York City's neighborhood hospitals are disappearing. James Wolcott on Tbogg's departure from Blogtopia(™ Skippy).

Laffy on another Republican talking point biting the dust (not that they'll let FACTS get in the way...)

Bob on the fire in Seaside Park. And at Blue Jersey, musings on GOP Patron Saint of Presidential Hopes Chris Christie's photo-op against a backdrop of what was supposedly stronger than the storm.

And let us not forget Fukushima Diary, which is still keeping the world updated on the nightmare that is still going on in Japan, even though the major media won't touch it.

Labels: bloggers, Blogroll Amnesty Day, personal musings

When we last left the valiant Mr. Brilliant, he was facing a carotid angiogram and a near-certain throat cutting. So it was with great trepidation that on August 20, we headed in at 4:30 AM to Big Prestigious Hospital, where some guy we've never met before would slice an incision in Mr. B's femoral artery and run a catheter up to his brain, which is sort of like driving to Florida by way of Albuquerque (unless of course you live in Albuquerque).

First we meet a bunch of pretty nurses, who wheel in a bunch of machines that go "PING!", which we're getting used to by now. The waiting area for this procedure is sort of cavernous, like an old 1970s nightclub turned into a radiology ward. Some very nice nurses come in, do some stuff with the machine that goes "PING!", stick some needles into Mr. B., which he accepts with a minimum of fuss, as he is starting to really identify with that old Esquire cover of Muhammad Ali. Then, in walks the neurology fellow, an Indian guy who is without a doubt the most gorgeous man on the planet. The nurses titter when he talks to them because he is so charismatic that a chorus of angels sings when he walks into the room. He looks like he just walked off the set of a prime time hospital show and thinks he's prepared to be the real thing. He looks maybe twenty-five. He does the chatty thing to put the patient at ease, and Steve finds out that he's a bass player, which gives them Something In Common, and so Steve starts to relax just a bit. This is good because he does not notice how I am gazing at the most gorgeous man on the planet. Then in walks the neurosurgeon, a Nice Jewish Boy with the serious and thoughtful demeanor of the president of the college chess club. The nurses don’t titter when he talks, which baffles me because he’s sort of cute too even if angels don’t sing when he walks into the room because he is clearly a Very Serious Young Man. He looks maybe nineteen, but carries himself with authority, and does such a good job of explaining the procedure so that I start to feel more comfortable leaving Mr. B.'s carotids in Dr. Chess Club's hands. Dr. Chess Club and the Most Gorgeous Man on the Planet wheel Mr. B. off for an hour of God-knows-what, and I hang around for the next two hours, trying to work and hoping mightily that these teenagers in scrubs and white coats know what the hell they're doing.

About an hour later, they bring a much-relieved Mr. Brilliant back, who says it wasn't nearly as bad as he expected, and Dr. Chess Club tells us that he had already scheduled Mr. B. for the full Dexter Morgan on Friday, but much to his surprise, despite Mr. Brilliant's penchant for cheesecake and the burgers served up at the Dog House Saloon, there IS no plaque to be scraped out of Mr. B.'s carotid, but instead, he is one of the "lucky" one-in-two-million with "classic" moyamoya. So three days later, surgery will still take place, and it is brought to you by the letter "E" -- not endarterectomy, as originally planned, but instead an EDAS procedure, which some kind person at some point set up as an acronym for encephaloduroarteriosynangiosis. What they do is they take the temporal artery in the temple and suture it to the covering of the brain, and over time, new blood vessels grow so that the temporal artery starts doing the big job of feeding the brain. I guess it's kind of like laying sod on your lawn in that you put it on the surface and over time it grows roots. If you have a strong stomach, here is a slide with a visual representation. Or if you have a less strong stomach, this. And he will have to have the other side done a few weeks later because he has this on both sides. The good news is that these bypass operations are nearly always successful in dramatically reducing the risk of stroke to nearly that of someone without this.

So a few days later, we head in once again at 4:30 AM to get there at 6 for BRAIN SURGERY. Now I've been pretty competent up until this point, but here I am, driving him into a hospital where a bunch of, well, kids, really, are going to do BRAIN SURGERY, and the Runaway Freight Train of Dread starts going and I start wondering what this parade of children in scrubs, little paper caps, and white coats who look like they are starring in a hospital show on the WB are going to hand back to me after they get done with Mr. B's brain.

At this point, Mr. B. is scared shitless, I'm scared shitless, and the usual pre-op bullshit seems kind of surreal. There are more machines that go "PING", more needles, another bedside neuro test with the chorus of the Announcer's Test, and then the anesthesiologist comes in. He looks maybe twenty-one. So if Dr. Chess Club is the president of the college chess club, the anesthesiologist is the guy from whom all the college kids buy their pot. Every third word out of this guy's mouth -- and please remember that he is the ANESTHESIOLOGIST, and anesthesia with moyamoya patients is tricky even when you are correcting it -- is "awesome" or "dude". With his blondish hair peeking out from under his little scrub cap, I am already thinking of him as "Spicoli the Anesthesiologist," and I am half-expecting him to start passing around joints and playing "Scarlet Begonias" through the PA system. But this demeanor makes him someone that Mr. B. would enjoy hanging out with, and they chat amiably about guitars and kung-fu. Mr. B. seems to relax a little and I am again starting again to think we somehow took a wrong turn in this building and mistakenly landed on the set of a hospital show, only now it has a name, and it is either "Abercrombie and Neurosurgery Medical Center" where all the doctors and nurses are portrayed by people from Judd Apatow movies and "Gossip Girl", or maybe it's "The Big Lebowski: The Early Years", in which we learn that Jeff Bridges' character used to be an anesthesiologist until he started hitting too many White Russians.

Then Dr. Chess Club comes in, a Very Serious presence after Spicoli the Anesthesiologist, and explains the procedure again. This is where the internet is a physician's worst nightmare, because I've done lots of homework by now, and from what I've read, a more invasive procedure called an STA-MCA direct bypsss is the preferred procedure, and what Dr. Chess Club is doing is called EDAS, which is an indirect bypass. This creates a deadly combination of "Caregiver Who Knows Enough To Be A Pain In the Ass" and Intelligent question, but I frame it as "just out of curiosity". To his credit, Dr. Chess Club is a good sport about this, and explains that they do the direct bypass with little kids who are having many strokes and with adults when they have an aneurysm or an AVF, which Steve does not have. This reassures me, because I have realized that as we have escalated the neurological tests, this whole thing has started to remind me an awful lot of Nate Fisher from Six Feet Under, though thankfully I have not heard Mr. B. say "Narm" at any point. Anyway, it's pretty clear that Dr. Chess Club may look nineteen, but he's done this before, and the whole thing is for better or worse sort of inevitable at this point. Later on, I read Dr. Chess Club's jaw-droppingly impressive CV, with honors all over the place and a list of publications as long as your arm -- all this and he's only a year out of residency. That gives me a bit of pause, but then I think how lucky we are to have Dr. Chess Club as Mr. B's neurosurgeon while his bedside manner is still that of competence, confidence, and knowledge but also kindness and patience, before he gets older, realizes he's a hotshot and becomes the asshole that, alas, is probably his destiny.

At around 8 AM, they kick me out of the prep area, and I spend the next four hours chasing down available electrical outlets, because I am working during all of this, trying to get a project out while he is in surgery. This is a good thing, because otherwise I'd be thinking about this KID cutting into Mr. B's skull and freaking out.

Finally around 12:30, Dr. Chess Club comes out, which gives me a perfect excuse to get off the phone with the manager of the programmers who are helping with my project. (Note: Saying you have to speak urgently to a NEUROSURGEON!! is a good way to get off of phone calls.)

Dr. Chess Club tells me everything went well, they are bringing him out of anesthesia and taking out the breathing tube, and they will let me know when I can see him. When I finally get to see him about an hour and a half later, he is in ICU with 157 tubes coming out of him. He's not able to speak because the breathing tube has made his throat sore, he's utterly miserable, and I stay only a few minutes before going home because it is 3 PM and I want to beat the rush hour and there really isn't anything I can do for him other than let him be so he can rest.

The next day is Saturday, so the traffic isn't bad at all. I feel a sense of dread when the visitor pass is for the aame ICU as the day before, but when I get to Mr. B's room, he is feeling much better, is sitting up in a chair and eating an omelet and blueberry pancakes. He still has 157 tubes sticking out of him and a catheter, which is surprisingly un-painful, and I remind him that this is how a catheter is supposed to be, not the way the clock watchers at the outpatient surgery center did it after the Butcher of Paramus did his bladder procedure in April. One of the residents comes in to check on him. She is a stunning young woman who gives the impression that she'd love to stay and chat but she has to go strut down the runway in the new Stella McCartney bikini collection (if there even is such a thing). I am now thoroughly convinced that this really IS Abercrombie and Neurosurgery Medical Center. He talks to her about the stinginess with painkillers during the first night. (This is something we will have to deal with when he has the left side done, and I am thinking I may just have to camp out in the ICU overnight that first night next time so I can go all Shirley MacLaine on the nurses if I have to.)

Abercrombie and Neurosurgery Medical Center is very nice in that they have valet parking that costs no more than parking in an independent lot. The parking guys are very nice to me because they have figured out that the fat middle-aged Jewish lady in the beat-up Corolla gives $5 tips while all the assholes in their Escalades give them a buck. On Sunday, after I turn over the car to the smiling parking attendant, Mr. B. is still in the ICU, but in a bigger room with a water view. The neurosurgery resident on the ICU unit that day visits. He looks about fourteen and comes across like a teenager dressed up as a surgeon for Halloween. He lacks the authoritative demeanor that Dr. Chess Club has. Mr. B. isn't as good at remembering names as I am, so we agree between ourselves to simply refer to him as "Doogie Howser" in future, should it become necessary. Doogie is under the impression that Mr. B. is staying in the hospital to do the other side, and we both rather vociferously set him straight, whereupon he crumples like a cheap car, and I feel like I have just kicked a puppy. I later on feel like a complete asshole, because it turns out that Doogie is not only a Harvard Med grad, but also has a Ph.D. in engineering and computer science from M.I.T. and ALSO a list of publications as long as your arm. You know, a freaking genius -- the kind of guy that makes you realize how little you yourself have accomplished.

Anyway, by Monday Mr. B. has moved into the step-down unit and Dr. Chess Club examines him and gives the OK for him to go home. Two weeks later, we go back so the stitches can be taken out, and Dr. Chess Club shows us the angiogram films. I find this fascinating, because my now almost five-year stint in the Land of Oncology has given me an interest in this sort of medical thing without having to do anything involving blood, I've read everything I can about moyamoya and what it looks like, and this makes it all REAL. I also find it kind of endearing that Dr. Chess Club is so clearly a Brain Geek, because while he explains everything in a very serious, doctor-y manner, you can tell that what he REALLY wants to say is "Look! How cool is THIS?" I hope he never loses that.

For someone who is battling not one but two life-threatening diseases, Mr. B. is lucky in an odd sort of way. He's lucky in that fate has conspired to spare him from a life-changing surgery that he dreaded, instead offering him the treatment he wanted in the first place. He's lucky that he could have been one of those kids who has stroke after stroke from moyamoya and has two brain surgeries in childhood but instead made it into his fifties pretty much intact. He's lucky that whatever strokes he's had have left him able to still recite Jean Shepherd rants, clear 800-plus viruses off of a PC, and play chess. He's lucky that cisplatin didn't give him a stroke. He's lucky that he fell in the bathroom and this moyamoya was discovered while it was still treatable. And he's lucky that we have good insurance and he can be treated by these amazing people.

I joke about Abercrombie and Neurosurgery and Big Cancer Center, but I am so humbled by the expertise and dedication of these young physicians and nurses at Big Prestigious Hospital, and by the doctors and especially the chemo nurses at Big Cancer Center. It is so energizing to interact with these ferociously smart and dedicated people. I'm awed by what they do every day. I'm just a chump that puts together systems for entering clinical trial data. These are the people who actually save lives. That many of them are still new at it means that they haven't lost their empathy and their excitement and their sheer joy in what they do. So if any of the people at either of these facilities should happen to stumble on this and recognize yourself or your friends, please know that we kid because we admire, and because in a year like we're having, laughter is the best medicine.

Related note: If you or anyone you know has been or ever is diagnosed with moyamoya, this series of videos by a 28-year-old woman who was diagnosed and treated are a first-rate resource.

(Go to Part III)

Labels: medicine, moyamoya, personal musings

It's been quite a whirlwind here at Casa la Brilliant lo these last few months. I've been working 7 days a week trying, mostly in vain, to keep caught up at work. Mr. Brilliant underwent three rounds of chemo with relatively few side effects, given the massive doses he was given. Sure, he felt lousy for three days after the last dose, and he lost most of his hair, but he's been quite the trouper and a relatively good sport about the whole thing...and when you're anticipating bouts of retching nausea and cachexia, he came through it pretty well....until the day during the July heat wave when he collapsed coming out of the bathroom, hitting his head on the wall on the way to the floor. And of course this happened while I wasn't home.

A day later he finally got around to telling me, and three days later, when I became alarmed because he was not having his usual perk-up, I called Big Cancer Center where he's getting treated and they insisted he go to the emergency room, where they stuck him full of needles, brought in lots of machines that go "PING!", hot and cold running nurses, and finally, medical techs that rushed him upstairs for a CT scan of the head, because when you a) fall, b) hit your head, and c) have good insurance, and d) the hospital just opened in June and has almost no patients, you get lots and lots of procedures and tests.

After the MRI, the nurse practitioner comes in and asks, "So when did you have your stroke?"

Wha???

Turns out that the CT scan showed evidence of "an old infarction", which basically means a stroke sometime between birth and about a month ago. Who knew? Anyway, they admit him for observation at the concurrence of his oncologist, and for 24 hours they stick him full of needles every few hours, do a cardiac ultrasound, stick him with more needles, send in two giggling physical therapists whom he promptly dismisses, and then stick more needles in him...and then the next day they do a brain MRI, and in the afternoon, a neurologist comes in and says "You look like Jack Nicholson." Now, Mr. Brilliant looks nothing like Jack Nicholson, except that there are some people, including some family members, who think he does. Other people have said he looks like Rich Little or Jim Carrey, and my mother used to say he looks like Tim Robbins, which he doesn't either. But Jack Nicholson is a relatively cool dude, so Mr. B. decides to be a good sport about doing a bunch of silly bedside tests designed to measure his level of infirmity -- except he doesn't have one. He passes the neuro test with flying colors in a game of "Stump the Chump", which is what the neurologist is now feeling like. After much hue and cry and tantruming by both Mr. B. and me, they finally realize that this particular gravy train is bound and determined to leave the station, and they let him go home, where there is already a message from the oncologist, saying she wants him to see Big Cancer Center's neurologist.

So off we got to see Dr. Brain Doctor from Big Cancer Center, who also can't make heads or tails of what is going on with Mr. Brilliant's scans. There is clearly evidence of a stroke, and apparently a pretty significant one, and yet here is this guy walking in on his own, passing every cognitive test with flying colors, pushing him away and pulling him with what you'd expect from someone who took up Shaolin kung-fu at the age of 48, and topping everything off with an unsolicited resounding chorus of the Announcer's Test. Dr. Brain Doctor from Big Cancer Center is an endearingly nerdy sort -- the kind of guy who thinks out loud and whose mind is halfway down the road by the time he gets his sentences out. And he admits he's stumped, wants another scan (because Big Cancer Center's machines that go "PING!" have magic Lil BUB Amazing Space Cat dust on them or something, or because we have very good insurance), so we make another appointment to have yet another scan.

Meanwhile, Dr. Oncologist consults with Jolly Jovial Oncologist at Big Cancer Headquarters and they decide that Mr. B. has to stop chemo until they determine what's going on, because it turns out that one of the chemo drugs carries a high risk of stroke. So now Mr. B. is facing radical cystectomy sooner rather than later, and we are both starting to freak out, becaue neither of us is psychologically ready to deal with surgery.

But wait, there's more!

So we go for the scan, and have a Top Secret (read: unbilled) consult with Dr. Brain Doctor from Big Cancer Center, who tells us that three radiologists have looked at his scan, and all agreed that what he has is moyamoya.


My response: "You're joking, right? What the fuck is moyamoya?" And yes, that is exactly what I say. It seems that neurology students learn about this in medical school, and then promptly forget about it because it is so rare. I won't take up blog space with a detailed definition, but here's a good place to start. We always knew that Mr. Brilliant's brain, like mine, is a strange and wondrous place, and now we have proof. But Dr. Endearingly Nerdy Brain Doctor doesn't care about the Jean Shepherd rants that are stored in it, or the memories of Gary Stevens and the Wooleyburger on WMCA, or the precepts of the Church of the Subgenius, or the entire sides of Firesign Theatre albums that are still housed therein, never mind that Mr. B. can still fix just about any PC problem you may have; he just wants us to see a stroke neurologist at Big Prestigious Hospital Affiliated with a Medical School.

So after more scans, or Tumor Assessment at End of Treatment, as we in the oncology biz call it, off we go for a fun day of first seeing the urosurgeon at Big Cancer Center, followed by enjoyment of a pushcart felafel, followed by Dr. Strokes "r" Us. The urosurgeon, a kindly man who is one of the top guys in the city and yet has somehow managed to avoid becoming an asshole, makes Mr. B's day by a) telling us that the scans show NO evidence of tumor and NO adenopathy in the pelvic lymph nodes and NO evidence of metastasis, which means a complete response to even the shortened regimen; and b) telling him that because of this moyamoya issue, surgery is out of the question, and they will do radiation instead, with a very low dose of the OTHER chemo drug, which does not carry risk of stroke but which makes him have trouble breathing so they have to shoot him up with Benadryl as a premedication. Mr. Brilliant is practically weeping with joy, because this means he is on the bladder-sparing modality that he had wanted in the first place, and "the team", which is about to grow bigger by some orders of magnitude, are clearly fanning themselves with relief because they were pumping megadoses of cisplatin into someone who, unbeknownst to anyone, was already at risk of stroke. This is in NO way a knock on the doctors at Big Cancer Center. With a disease that affects maybe one in two million people, most of them either children or Asian, why would you even THINK about it, let alone screen for it? In fact, that Big Cancer Center is a) able to turn on a dime, shift gears, and mix metaphors so quickly, and b) is going to be teaming up with Big Prestigious Hospital's neurology team makes us actually feel MORE confident in them. So all's well that ends well, we have what is essentially remission, and the radiation should clean up any pesky hidden cells that might be lurking. It's all good.

In the afternoon, off we go to the stroke neurologist, where Mr. B. passes with flying colors and a big brass band yet another bedside neurological test, topped off with another resounding chorus of the Announcer's Test. The neurologist confirms the moyamoya, but because moyamoya a) usually occurs in children; b) is usually symptomatic; c) usually occurs in women if it occurs in adults, he thinks that since we are looking at a 58-year-old white guy who is virtually asymptomatic, what we are dealing with is moyamoya-TYPE structures caused by garden-variety atherosclerosis, and prescribes a carotid angiogram.

Now, if you don't find the idea of a carotid angiogram terrifying, you either have been in and out of hospitals since childhood, or you are insane. So both of us spend the next few days freaking out in various ways at the thought of a procedure where they thread a catheter into your femoral artery, run it up to your carotids, and see what's going on. Dr. Strokes 'r' Us is convinced that what will come out of this angiogram is the need for an endarterectomy — an even MORE terrifying surgery that sounds like something Dexter Morgan would enjoy on a particularly bad day.

So after five months of dealing with a particularly nasty kind of cancer, and getting some preposterously unexpected but highly welcome good news, now we are looking at getting him through something even more terrifying. And this, my friends, looks like a good place for a cliffhanger.

Next up: Part II: Abercrombie and Neurosurgery, Hey Kids Let's Put On a Hospital, and Spicoli the Anesthesiologist.

Labels: cancer, medicine, moyamoya, personal musings

The smartphones that people use for texting are PHONES. That means that you can, in most cases, set a voice command to call a number: "Home". "Jackie." "Bob." "Tony's Pizza."

Talking on the phone while driving, even with a handsfree set, is distracting enough. I've had to attend teleconferences while driving Mr. Brilliant to chemotherapy. I don't like to do it, and I usually say at the outset that I am on to listen, but I probably won't speak. This is because my handsfree earpiece has no mute button, and the screen of the phone is difficult to see in the morning sun. I've reached a point now where I just don't attend, because it is just too much to focus on while driving down an already-treacherous Garden State Parkway at rush hour -- and because Mr. Brilliant has a habit of forgetting that I am on a teleconference and yelling "Asshole!" at other drivers (who really are). But one thing I never, ever do is text while driving.

I don't see how anyone can text while driving. I have a hard time with the tiny keyboard when I am sitting in my house. But I can always tell the texters. They're the ones crossing the line to the left, and then to the right, and back again. They're the ones who slow down from 65 down to 50 for no reason. They're the ones who realize at the last minute that they are close to their exit and cross four lanes of traffic in a quarter mile. They're the ones who don't bother to even slow down coming out of side streets. The handset-talkers aren't much better, and despite stiff fines in New Jersey, not a day goes by that I don't see someone yakking on a hand-held phone.

I don't know why people need this constant communication. I realize I don't have as large a social circle as some people do, but unless there is some kind of dire emergency, why do we need to be talking or texting 24 hours a day? When we are going to the supermarket, why do we need to be on the phone constantly? What is so urgent that it can't wait ten minutes?

It isn't just while driving, either. My employer is about to move us to an "open concept" workspace building, and the thing I dread most about it, other than losing my 30-second zone-out "power naps" when I have been working till 11:30 PM for fifteen straight days and am so sleep-deprived that I can hardly see (another road risk, I might add...), is the damn cell phones. Already, people set their ringtones to "LOUD" so that when they leave their desks to get coffee, they can hear it and run back. Why they don't take the phones with them, I have no idea. One colleague has a husband who calls her at least every hour. If he can't get her on her office phone, he'll call her cell phone. And he will do this every five minutes until she answers the phone. It's going to be horrible.

I use texting more than I used to, but I never use it in the car, and if for some reason I need to make a phone call, I pull over to the side of the road. I've been dealing with crises for nearly a solid year, between my mother's last illness in September 2012, her death, and then only ten weeks later, Mr. Brilliant's diagnosis and treatment. There have been hospitals, trips to my sister's to clean out and organize, driving and driving and driving; communicating what's going on, and trying to juggle work through the whole thing. And not once have I needed to send a text message while driving. So who on earth do all these people need to text and drive? Or call and drive? Can't we wait ten minutes for anything anymore?

The film above, directed by Werner Herzog, will be shown in over 40,000 high schools. It should make a difference. But it won't. Because we are too fucking busy insisting that our right to do anything we want outweighs anyone else's right to live. We see it with guns. And we're going to see it with texting. Because in our devolution from a society in which people look out for each other into one the motto of which is "I Got Mine And Fuck You", we are no longer able to look past our own noses.

Labels: personal musings, societal decline, technology