It's like that thing when something does you know

I have a bad case of CRS. It's better than Alzheimers but worse than just being a dingbat. CRS for you youth who don't have to worry yourselves with these sorts of problems is Can't Remember Stuff. We all know the S isn't for Stuff but I am tired of libraries blocking my posts when I tell it like it is.

My case of CRS began last month with a big ole seizure that I don't remember and there's just been a waterfall of don't remembers ever since. And if one more well-meaning nugget brain says, "Gosh, you should get that looked at" I will transform into Can't Refrain from Slapping. 

Yes, there are tests, doctors, plans, diagnoses. Blah blah blah. This is one of those rare situations in life when I really don't give a rip about what most anyone has to say. Unless you are my neurologist or an epileptic, please do not tell me how I should feel, what I should do, or how I should live. Bad mood much? Zip it, stuffhead.

There is a happy side to this. Because I work on a hospice unit and can find happy in most anything. Unfortunately, I just took a break for a tortilla chip and can't remember the happy side. Or why I started typing. Hmmm. Let's try this again.

I looked back in the blog posts from 5 years ago. We thought I had viral meningitis back then. I tried to blog about it. It was seizures we know now. Weird. Clearly Resolving Something. 

I have become Lucy from "50 First Dates" or the scary tattoo-covered dude from "Memento", two of the most famous memory loss movie characters. I prefer to think I am Lucy. She at least can remember for a whole day. I can't, but it is something to strive for. I'm realizing that Lucy isn't played with nearly enough rage. The lack of memory isn't as upsetting as the times when I have an inkling of everything I am forgetting. 

I was thinking today, if I had a friend who had this - how could I help him or be there for him without making things worse and aggravating him to the point of Cursing Really Stoutly at me? The answer can only be concocted by taking the little perfect bits of help others have been doing for me and put it all together in some sort of gentle cookie. Then tiptoeing to his door and oh so carefully passing him the cookie. Then not expecting him to remember the cookie. 

My parents offer me a 5 o'clock cocktail. That is nice. A friend texts every couple of days to make sure I don't need another trip to the coffee shop. Others send little messages here and there just to letting me know they and I are alive. I try not to eat out any more because it makes me pretty sick - all the people, the sounds, the lights, the movement but for less than an hour it can be nice. Good friends have offered to do fun things with the children. That's the best of all. That and not expecting me to remember anything.

And one friend reminds me of who I am, what I am doing, what's been going on for over a month. It's like telling me a bedtime story. It is very relaxing and it all sounds familiar if not completely believable. (Have I really given THREE public talks, done a good job of them, and don't remember a word of ANY of them? Did I really play the role of a crazed religious apocalyptic commentator for a multi-media art collaboration at the Anderson Gallery? And... Oh my gosh - I haven't been paid for that funeral?!)

 If I had a friend who was going through this, I'd send up the occasional hi with an offer to do something or go somewhere. I would NOT ASK, "How can I help?"  Or offer, "Call me if you need me." That assumes a level of memory and understanding completely beyond me/him. The key phrase is, "Is there anything you need TODAY?" 

I know that a thoughtful blogger would wrap this all up in a bow with a smile. Maybe that's not true. One of my readers is very ill. From his hospital bed he told me that it is hard for him when my blog goes black. Not everyone is looking for brilliance. Sometimes just a sign is kindness enough. A thoughtful blogger is trying to say hello by just saying the truth. Writing is very hard. Strange words just leap into sentences, and not much seems to rationally leading to not much else. Hello! Truth.

No, I don't need anything today. I'll be checking in on my reader in the hospital and he and I will chuckle when we can't remember what the other has said. 

Curiously Resilient and Sturdy

Author's Note: As an experiment, I wrote and edited this as I normally do. I went over it three times in full before posting. 8 hours later I came back and saw all the strange little wordings and mistakes. I have kept them to give you a bit of the feel of temporal lobe mayhem. And no, I did not remember what I wrote but felt like the cat who ate the canary because I knew I wrote anything at all.

Ransom Note

Dear Bliss Failure,

We have taken custody of your happiness. Your neglect of it was unconscionable. We will not disclose its location. If you want it, get off your sorry procrastinating selfish lard butt and find it.

Some of our members insist on giving you hints as to its hiding place. The rest of us think that if you are so dim as to not know the location of your own happiness, you don’t deserve to find it. Our Chaplain overruled reason by pointing out that your sense of direction may be obscured by your suffering. Bleeding heart, that one. Fine. Here are a few hints.

Your contentment is on the move because you don’t deserve to find it easily after your blunders with that relationship a few years back, your lackadaisical approach to saving for retirement, and what you’ve done to your body.

Seek it out in places both quiet and rowdy, in critters and cretins, tomes and movements. If you do not search for it, work for it, consider it, and value it… we will eat it all up.

We will return what is yours sooner if you are willing to dance, even if only in the privacy of your own home. Otherwise you got to do it the hard way, suckah.

Assistance of others is a non-negotiable term of our surrendering your delight back to you. Friends, lovers, family, strangers are all welcome. No police.

We are giving you plenty of time to come looking - but should we discover you have spent that time surfing the net, gossiping, Facebook stalking, watching porn, buying lottery tickets, or looking in the mirror while making disparaging comments about your appearance – we will take your happiness on a lovely hike complete with picnic and sunset marveling and never bring it back.

There is no monetary ransom because you can’t buy happiness, you dumbass.

These are our conditions.

Hugs and kisses,

The Suffering Resistance Front, Central Virginia Chapter

Holy Lessons at Lenten End - no, not exactly

I learned this stuff this week. What did you do?

* Go to the damn support group. Are you listening to me? Do it. We all are working through something. Get out there, listen to someone else, admit your imperfections, and go try life again. Mine is a bereavement support group. We meet Tuesdays at 5:30. 

* Independent radio, public broadcasting, documentaries, museums and Wes Anderson movies are good for you. I swear. And when they don't meet your needs, let them know. Thanks to my 8 year old daughter, the independent radio listeners of RVA were treated to the mellifluous sounds of Ron Jeremy crooning the Miley Cyrus ear worm "Wrecking Ball" this morning. How can you ever risk missing an experience like that? (Praise Buddha - she thinks Jeremy is a professional comedian.)

* Any phone app that suggests its owner has PMS was created by evil spirits and should be deleted immediately. Followed by the ceremonial eating of a white chocolate and cashew cookie.

* Whatever your religious or spiritual leanings - your world perspective is better when hanging with my LGBTQM Lenten Book Group. M stands for My goofy tail and if you think we are talking Christian dogma -we think you had an unfortunate head injury and wish you speedy recovery.

* After a terrible day, someone you love really does want to be with you and doesn't mind that you aren't a glowing, charming ball of happiness. And you don't have to keep apologizing. (Haven't really learned that second one but I like the way it looks on the page.)

* The parenting pickle: your child has been grounded since what feels like the Reagan era. On the last day before Spring Break he wants his best friend who gets exceptional grades and is never grounded to come over. And you do need help getting some things into the attic. What to do, what to do. (Yeah, they are on the front porch right now and the attic is a bit fuller.)

* The best friends are the ones that are impossible to discern whether they are a friend of yours or your kids. Until they pop open a beer.

* When a dying man who can barely breathe asks you about your beliefs on Jesus and you have a view considered heretical in some circles (mostly just Christian ones), take a deep breath and tell him the truth, no matter what it is. Nobody wants to be lied to at the end of their life. And what's the worst thing that can happen? Never mind. Try not to think about that.

* There are very limited circumstances in which the lyrics of the Gap Band make any sense. For greatest clarity, play on a Spring Friday afternoon at 5:00 PM. "Say, Oops up side your head..." makes no more sense then but you can dance or hula hoop to it.

Gotta' go hula hoop now...

How I Make Deviled Eggs

I woke up Friday at 5:30 AM in a gorgeous Manhattan condo. The condo's two babies and two daddies were asleep as I snuck out the door at 6:15 for Penn Station. I had tried to explain to the babies that I was saying goodbye last night. They weren't buying it. I'd spent four nights in their playroom Murphy bed. In baby time conception that meant I would be there for their proms. 

The daddies were probably glad to see me go. I fixed a huge Southern meal for them last night which had so much fat and triglycerides that I am almost certain I gave myself a hernia slinging butter in the pots. 

Let me stop exaggerating. The butter was slung and I have a small herniated spot on my belly button, but there is no scientific explanation suggesting causality other than timing. I think I got the hernia from lugging my 6 ton luggage around.

And I’m sure the daddies were just glad to see me go because now that I have introduced them to the Burlesque Babysitter I can do nothing more for them.

Yes. You read that: the Burlesque Babysitter. Every cougar mom’s nightmare and I invited her over for sweet taters, shrimp and grits, and this terrifying concoction I make with brown sugar and Jack Daniels. The daddies were already weakened by the food, she just came in for the kill.

The Burlesque Babysitter is the closest I get to knowing a superhero. Mild mannered, sweet Jewish humanist by day and gyrating goddess whose fake eyelashes are longer than a deviled egg by night, she came over for the Southern cooking. She had been at a photo shoot and still had her gear and sparkle boots on. The mom in me is sure she will need a chiropractor from the wig.

Last time I saw her she’d been all Clark Kented out and was hugging her auntie and cousins. This time she had the daddies debating the Kinsey spectrum of sexuality and just where they might be on it after all. I’d be really jealous if she weren't so flipping adorable and hadn't raved about every single thing on her plate. (Such a good lass, that one.)

The daddies were not one bit inappropriate with her either. You see, Lady Gaga had a piano teacher who was a stripper teaching her lessons throughout her childhood. This is the kind of information two daddy Manhattan couples have and find inspiring. But my girl's sparkle boots didn’t hurt her chances for babysitting either.

Where was I? Condo, hernia, daddies, artsy nudity… oh right, the train ride home. The long and short of that is the multi-state conversation with my seat mate about his former sex addiction.

What? What do you talk to your Amtrak seat mates about?

He was totally appropriate, too, as much as one can be when sharing their recovery process with a stranger of the opposite sex on a train. You see I had dropped the C bomb on him accidentally. That means I come to know how his mom died, what his father regrets most, his greatest fears for his children, why he is clean and sober in every way, and how he is adapting from knee surgery at Christmas.

C bomb = So, what kind of work do you do? he asks. I work as a hospice chaplain, I respond.

I try not to drop the C bomb when traveling. A seminary professor warned me decades ago, “If you want to sleep or read when traveling tell them you are an evangelist. If you feel like working, tell the truth.”  

I told the truth. And so did he from what I can tell. Nice guy, too. I gave him a big hug when I departed and told him to tell his Nana and them I said Hey! 

My beautiful, elegant mother who is without flaw forgot she was supposed to pick me up at the train station and went off galavanting in the Shenandoah so in between nibbling crudite from my purse and talking sex addiction I arranged a ride with a friend during the trip. 

I would very much like to just post that friend's name for all to see. Why? Why would I do such a cruel thing to such a good pal who drops everything to save me from a Richmond cab? (For another time can we examine why taking a cab in Richmond is seen as offensive? You took a CAB? Good God, why didn't you call me?)

I am plotting my revenge on this dear friend because the second he had me in the car he says. "I've gotta' go by Dirt's. Then I'll drop you off." 

Nooooo!!!

Dirt is Richmond's most notorious Transgender Performer also known as Dirt Woman. I prefer to call her Baby Girl out of a misguided notion that affirmation will engender self-respect on her part. Hasn't worked thus far.

We roll up in Dirt's, sorry - Baby Girl's neighborhood after driving past mine as I put my nose against the window and whimpered. Baby Girl was rolling down the street. In her new wheelchair and looking pretty good for her which is pretty frightening for anyone else. Friend-who-will-not-be-named rolls down the window. 

"I brought your groceries!" (I think it was hooch but I've never seen Baby Girl drink much and my pal usually brings her food so, who knows?)

"I'm going to the Dr. Drop 'em off." No thank you. No peals of delight. "You got any cash?"

"No, Dirt. I got your groceries."

Baby Girl looks meaningfully at me. Baby Girl believes I am the greatest minister Richmond has ever had and scolds me in public for not having my own church because I am denying the city its spiritual core. 

I give her a 5. No thank you. No peals of delight. She rolls off. I ask my buddy if I can go home now. We laugh hard.

When we finally arrive at my place, even though my poor bedraggled friend tells me his back is killing him I explain my belly button hernia to him and he carries my suitcase up cursing in new and imaginative ways while I carry my work bag and purse. We get to my porch and I freeze.

I made it 5 days at a scientific convention in NYC about research pertinent to health care chaplains. I walked 19+ miles while I was there because I have Winter of '13-14 PTSD and kept thinking a blizzard could come any moment so I shouldn't ride the subway. I cooked for 6 hours for a dinner party and then upstaged my own self by introducing my fabulous cohorts to each other. I got up before dawn to get on a train where I would become chatty with a recovering sex addict, not in spite of that revelation but because of it. My mama forgot me. I gave my last fiver to a funky gal/guy in an electric wheelchair and I have a belly button hernia. 

I am EIGHT FEET from my flipping front door and I throw my back out.

I may be a chaplain but when I look back on this day all I can think is...

What The HELL Was That All About?

I don't know. Here's my deviled egg recipe.

8 boiled eggs

3T Duke's mayo (more if it's lumpy)

1T  Grey Poupon

1T of capers, crush after measurement

dash of caper juice

white pepper, black pepper and salt to taste

chopped anchovies for garnish

(All measurements require generous dollops that seem like they would be Tablespoons if someone made them commit to something as patriarchal as measurements.)

Directions: Open beer and drink. Peel the eggs. Drink. Slice the eggs open with a serrated knife because that's how my grandma did it and it makes them groovy. Mix yokes and other ingredients preferably in bowl. Drink. Stick your finger in the yoke mix and taste. Rinse palate with beer. Add random crap til it tastes like you want it but you won't remember when someone asks the recipe. Garnish with anchovies. Serve with beer to daddies and Burlesque performers.

Now say thank you and squeal with delight. It's all I ask.

Back Page Collection

One of the activities keeping me busy over the past months as I was not blogging was freelance writing. Some of my work has been for a German publisher and has to be bought to read -sorry 'bout that. But I have been contributing more regularly for Richmond's Weekly Magazine, Style Weekly.

I have a long, strange history with Style. My mother worked as an editor there in my youth. Naturally I considered those the glory years of the publication (until they started paying ME).

I was named one of their Top 40 under 40 one year, a huge honor. But the way the piece came out caused a bit of... let's say animated conversation. All agreed the photo by Jay Paul was jaw dropping in loveliness, however.

Style reported on my final day at one of the churches I served. That was pretty cool.

And now whenever they want something unpredictable, they call me and I write for their Back Page. Long strange trip it is. I hope to keep truckin' with Style.

Here are the 4 columns I've done so far. If you like them, let Style know. I like their assignments they offer me and their checks always clear.

Sci Fi Socio Political Parenting Piece (With Ed Harrington's very creepy graphic. I love it.)

New Year's Resolutions 2014

Some Sodomy Humor

How Obama Can Win the 2012 Election (Voter sex piece.)

Techno Bust

continued again it in the complete and total engraved answering machine you must be bad.

Hmmm, well never mind on the voice recognition plan for blogging.  I'll check back in later when I am done lamenting the lack of engraved answering machines in my life.

I must be bad.

The Mayor of the Hospice Unit

Most people think of dying at home when they think of hospice. Then again, most people don't want to think of hospice at all.

Although I work for hospice, I work mostly in a hospital. On the hospice inpatient unit our job is to find solutions to complex pain and symptom issues unmanageable at home. Well, that is the medical side of it. As chaplain, my job is to be with people and their loved ones in a way that reminds them of what they value and hold dear. Yes, I have the better job. No, I'm not one bit biased; I just hate suction tubes, suppositories, and the math involved in pharmacology.

It is not uncommon for us to have patients for only a day before they die. It is not uncommon for us to have a complete turnover in our unit within a week. Hospital staff think, "Well, duh. That's our life every day."

The difference is that hospitals have the goal of prolonging life. Our goal is to relieve suffering, provide compassionate connection, and prepare for death. The difference in our goals changes the style of care. An example of the difference: when I worked on regular units in hospitals and patients died, there were often many staff in the room because some sort of emergency code had been called. Everyone is talking, rarely is anyone talking to the patient. Family is asked to step outside. People have side conversations about their shift, the president, a sale at Kohl's; nervous conversations based in the fear of failure.

Vigorous attempts are made to save a life, an anonymous life. When the patient dies, comforting of the staff takes place in private because an environment in which success equals life has difficulty balancing the reality of grief and loss. (Don't get me wrong- if I should choke while we are eating tapas, get me to the hospital quickly. I'm just saying the perspective is not warm and fuzzy.)

In hospice when a patient dies we move slowly and deliberately. Prayers are said if appropriate, soothing words if not. There are no alarms or bells, few tubes or machines. If family is present, they are surrounding the patient and only a couple of staff are in the room at the same time. We all know the dying person's name.

Unless we are singing or praying, we the staff are very quiet. Afterwards we may give each other hugs, or thank one another for the care we gave that patient. In the best cases, we have come to know the family, so we better understand what this particular loss means to them. We talk about the patient again after death to assess the bereavement risk for the family, and if we were there, to share our opinions on whether it was a "good death" (when the patient dies in a way that was in line with their hopes). This latter part is important to us because we want every patient to die well, but know that this is not something we can truly control. The assurance that the best end occurred is a great comfort to hospice workers.

Which brings me to the Mayor. The Mayor was a member of the Greatest Generation. He was on our unit for a couple of weeks getting symptom management. He sat up and received visitors like a priest receives confessors. He smiled when staff came in. He read books and magazines. He was sound of mind, strong of character, and a gentleman in every way.

We planned to send him home with his medications stabilized to be with his family for his final weeks or months. I went home from my shift on a Friday after saying good night to the Mayor. It's a habit you get into with certain patients. When they are fully aware of their surroundings you give them the respect that you would give them if you were a guest in their home. Before you leave "their place" you say goodbye. At least I do.

When I would check out with the Mayor, he'd look over his reading glasses, put out his hand for a shake, and bid me a happy evening. He also always thanked me for coming to see him, even though he had visitors every day. What a guy.

I came back Monday morning and went to say hello but the Mayor had gone home. It was a great way to start the week. The Mayor had become well enough to go home and live in the comfort of familiar surroundings. Or so I thought for about thirty minutes. And so did several of my co-workers. We were all smiles.

In team report we covered the deaths of the weekend. The Mayor had not gone to his home in Richmond but to his eternal home. We were shocked and distraught. How could this happen?

Now you are probably thinking, "You work in hospice every single day and you get distraught when a patient dies? One patient?" Well, yeah. It's called a breakdown in compartmentalization and here is how it works.

We can all agree - working in hospice is not easy. There have been 12 patient death weeks at our unit. And I mean work week not 7 day week. There are a limited number of ways to deal with that and remain engaged and open to the next 250 patients, much less 250 more families. In general, we do it through routine.

Our patients mostly die according to a couple of patterns. We learn the patterns and we say goodbye to them incrementally according to the pattern. We can handle it as long as it stays within the emotional safety of the rhythm we know which is usually one of gradual decline in communication and interest in the outside world. Just as a baby becomes increasingly interested in the world beyond what she can reach as she grows, the dying person becomes less engaged the closer she comes to death.

Until they don't. Like the Mayor.

On the last day of the Mayor's life he ate three small snacks, read a magazine, hosted family and guests in his room, and took a nap. As he was getting ready for bed he began to feel ill. He was sitting on the side of his bed waiting for the nurse to assist him to the bathroom. She entered and he shared that he didn't feel well. They talked. She checked on his vitals and she realized that the Mayor would not be following the pattern. She told him. He talked to her. She held his hand and laid him on his bed. She talked quietly to him and he to her until he died. It all lasted ten minutes.

The Mayor didn't die as we or he had hoped or planned. He was in a hospital not home. He was without his family. He had not finished his plans.

But he died with someone caring for him. Someone holding his hand. Someone who knew his name. Someone who mourned him when he was gone. Staff all hugged each other quite a bit that day we found out how the Mayor had died. Then we went into other people's rooms and remembered to give a little extra eye contact, hold their hands, and say goodbye when we left for the day. The dying may never end with hospice but neither does the learning.

Newcomer Introduction

Wanna know what I've been to since conception? First - you need a better hobby. Second - well, ok.

Life History or at least the good parts.

1970's - Idyllic childhhood in Richmond, Virginia filled with urban living, roller skating, dancing,reading and marching to the beat of a tune heard only in my noggin.

1980's - Discover boys, DIY fashion design, poetry, Prince, and an interest in theology. Go to college. Fail to fit in. Revel in that.

1990's - Throw away youth on formal education including seminary. Learn that hate is a word reserved for: endless committee meetings, traditional worship styles, cookie cutter weddings and funerals. Determine that organized religion can easily disintegrate into a 4 letter word. Tap into an unknown gift of calm and comfort in the face of death. Go into hospice work because death is not the worst thing that can happen to a person.

2000's - Have babies! Love babies! Have babies suck the life out of me. Brainwashed by unknown forces (aliens? ghosts? zombies?) to go back into parish ministries within "organized" religion for over 6 years. Transform the concepts of death rituals and worship experience for a small set of religious liberals who reward me greatly. Blog, rebuild some crucial closets and bathrooms of the Gulf Coast after Hurricane Katrina, learn a ridiculous amount about death, dying, grief, funerals, cemeteries, and death related legislation. Leave parish ministry in search of sanity, time with the "babies", and a family business.

2010's - A roller coaster. High points include teaching hundreds of students on a variety of topics, writing, protesting uterus obsessed legislation, mentoring the "babies" in State Fair arts and crafts competitions, learning to play full body tambourine in New Orleans. Low points include family tragedies and marital dissolution. You can't have everything, right?

These days - Revel in the opportunity to provide my offspring with an idyllic childhood in Richmond. Rejoice in urban living, roller skating, dancing, reading and marching to the beat of a tune heard only in my noggin.

Luddite Lament

"And now I'm back... from outer space... you just walked in to see me here with that same look upon my face..."

 I have been locked out of the Jots world for MONTHS. Madness, chaos, misplaced passwords, rabid procrastination, technology continuing to advance while I wonder where I put the instructions for my stereo.

Oh, yeah, and now that I am back I see all the stuff I was trying to fix on this thing when I locked myself out. Ugh. No wonder it took me so long to get back. Luddite life - you never really put it behind you.

Well, this loooong silence no doubt separated the wheat from the chaff as far as my dear twelve fans are concerned. I have so much to update the remaining three of you on! There have been publications. There have been radio shows. There have been T-shirts designed! There are zines in the works. There was the world's zaniest birthday cake. Most importantly, I neither broke any part of my body nor had any catastrophe.

The only bad news is that I work six jobs in order to keep my children in shoes that fit. They are very tall and I daily wonder how that happened. The balance is that one of those jobs is paying for health insurance. I can't afford a co-pay yet but... baby steps.

So, if all goes well (toes and neck hair crossed) this is the first of several entries bringing us back together and caught up. Please feel free to say hi in the comments. I've missed you three.