why I'm surly tonight

Baptist gave up. I knew they were going to. Dr. J had said that they were going to put in for a transfer to Butner because it would take weeks. "Besides," she said, "If she's doing well, we can turn it down." Less than a week later a bed came open and they didn't turn it down. I have to give my permission for them to give Benadryl, but I have no say in her being driven across the state to a new hospital by a sheriff's deputy.

It's a bad time because they have just started her on a new medication and are tweaking others. Psych meds often have to be started at low doses and then increased gradually. Sometimes you have to prescribe different drugs in the interim, while the new drugs are being increased. And then there are the drugs that are given to stave off the sometimes horrible side effects of other drugs the patient is on. She is right in the middle of all this.

Luckily I have the email address of our former social worker at Butner and I email her to tell her Elizabeth is on her way and not to change any meds. They can't add anything without permission but they can take her off. Tonight the admitting doc calls to ask my permission to put her on new meds. I say no and ask that she stay on what she was already on until I can meet with them. He can't find a record of her being on any meds. I tell him what I think they are and he finally finds a reference to that. He agrees to leave her on her current drugs and let me take it up with her medical team tomorrow. He is very nice and tells me how Elizabeth is doing. She is excited to be back because she will get to see me more.

I'm going to take a hot bath and read my murder mystery and eat ice cream and pet a cat. And then I'm going to go to bed. That's the best plan I can come up with at the moment. I'll think about it tomorrow.

hope of things unseen

I first saw the painting The Disciples Peter and John Running to the Sepulchre on the Morning of the Resurrection in the Musée d'Orsay in Paris many years ago. The painting has a very modern feel to it, but in fact it was painted in 1898 by the Swiss landscape artist Eugène Burnand. The Musée d'Orsay has an overwhelming number of impressionist pieces, housed in an old train station. I drifted through the light-filled space, leisurely drinking in my fill of Renoir, Degas, Monet, and Van Gogh, all favorites of mine, glorying in the joy of so much wonderful art that I'd seen up to this point only in books. Then I came to this unfamiliar painting and it stopped me cold. I stood for several minutes and just stared.

You know the story. After the dark days before, the sun is rising and John and Peter rush to the tomb. They have heard Mary's report of the stone being rolled away and, except for the linen clothes, only emptiness waiting within. It's easy to tell who is who: John the mystic, ethereal in his white robe, has his hands clasped as in supplication as he runs ahead. Peter, the craggy fisherman, looks as if he's been on a three day drunk. He has, of course, but it's a binge of bitterness, self-castigation, and grief rather than alcohol. What they have in common is the hope and shock that permeates every part of their being, that propels them in spite of their exhaustion and fear to race each other, that wonders what they will find there . . . . .

Hope is often indistinguishably mingled with fear; when life is satisfactory, there are only superficial things to hope for: a new car, a sunny day, a raise, pot roast for supper. It's when things are the darkest that hope is most needed; that's all that's left. Is it even possible to live without hope?

When Elizabeth was ten, we went to a regularly scheduled psychiatrist appointment. For some reason, she would not cooperate that day and hid under a chair. Dr. B tried to coax her out, but nothing worked. Finally she stood up and said, "There are children for whom there is no hope and I think you have one." Then she left the room, leaving Elizabeth and me staring at each other, her from under the chair, me standing in the middle of the room. I held it together until later of course, because that is what you do when you have a child with severe anxiety. No hope? I changed psychiatrists, but the damage had been done. No hope? What do you do with that?

I have a number of friends with mentally ill children and one day I ran into one at the mall. "Linda," she said, "I keep having this dream of holding D. and walking into the ocean and not stopping." Tears filled both our eyes. I could only nod because I know that dream all too well. It's the dream you have when you have no hope. No hope? That closes all paths but one.

Elizabeth has been hospitalized for three months now. She is fragile and falls apart easily. SHE has hope; she talks regularly about what we will do when she comes home. "You can't come home until you can do it safely," I remind her. "I know," she says. "I KNOW I can do it." Twenty minutes later, she falls apart over my leaving or having to take a bath or a perceived slight from another patient, and burly security officers descend once again. I see the signs of fatigue on the part of her doctors and nurses. They look away when I ask questions and their responses are shorter than they were. They spend more time justifying their actions. I have seen this before. It's what happens before someone once again gives up, when they once again stop hoping, once again taking my hope with them.

This weekend, Easter weekend, I visited on the Saturday. The regular docs had the weekend off and a Jewish doctor filled in for them. He's on the faculty at Bowman Gray and hadn't seen her before. While he was making rounds, she had a tantrum and he got to see her in her full glory. I came in shortly after and he asked to see me. "I'm wondering," he said, and proceeded to go down a different path than we've gone down before. "I don't normally work with children, but with violent adults. Still, there are some things in common." He proposed a new drug, part of a class that hasn't been tried, a cheap generic with few side effects which can be added to her existing meds. He called the attending at home and got his approval. "Let's try it," I said. I told him the story of Dr. B. He was shocked. "Oh no," he said. "Of course there is hope."

At the Easter Vigil that night, I sit in the dark and cry. Bishop Curry preaches, a good thing, because when he talks, I can almost believe in this risen lord stuff. When he talks, I can almost have hope. He reminds us of the power of baptism, and I remember that it's Elizabeth's and Claire's baptismal anniversary. "We bind onto ourselves today the strong name of the Trinity," we used to sing over their lamb cake lit with one of their baptismal candles. The lights come on and the roar of the Easter shout fills the room. Darkness is defeated. Of course there is hope. I wipe away my tears and ring bells with the rest.

I wonder what John and Peter felt when they reached the empty tomb. In John 20 we're told they went away to their own home. This empty tomb, this symbol of hope and resurrection to us, must have seemed like just another defeat among so many. I wonder what they were hoping for? They could not have imagined what would happen next. They could not have hoped for the resurrection.

What do I hope for? I hope that Elizabeth, a child of God created in God's image, will fulfill the promise of her baptism. I hope she will be whole and happy and faithful and useful. I hope that this next drug will be the one that works, and if not this one, then the next or the next or the next. I hope for more doctors who look at her and are intrigued rather than defeated. I hope for things I can not yet imagine.

Minister Charles L. Allen says, "When you say a situation or a person is hopeless, you're slamming the door in the face of God." I hope I remember that.

Of course there is hope.

wonderful pest

It's hard to remember when Bailey wasn't a part of Holy Family. First, he belonged to a neighbor, but he obviously wanted to become an Episcopalian, because he escaped to our not-so-welcoming arms whenever he could. He even ripped out his people's screen porch so he could join us in worship. Far too many times, I crawled around the altar during the 8:00 am service, trying to get Bailey out and back home. At Elizabeth's adoption party, I put him out of the undercroft 17 times. There is no telling how many times others did; the persistent widow had nothing on this guy.

Finally we all just gave up. His people appeared one day with his paperwork, telling us they were moving to Colorado and were afraid Bailey would walk, fly or hitchhike back to us in Chapel Hill. Cindy, our daycare director, became the keeper of the papers and the maker of vet appointments. I became the surreptitious collector of money for food and vet care. There was no shortage of donations.

Bailey pulled his weight. He attended every meeting, working the room while purring loudly, and made an appearance at every service, although he generally cut out during the sermons. He attended confirmation classes, but found the theology pedantic, so he slept through most of them. He took his naps with the children in the daycare and never bit one, even when he should have. When the health inspector came, he at first thought Bailey was a stuffed animal, until he stood and stretched, yawning in that slow, huge way that only cats do. Although the inspector docked the day care points, it was easier just to take the hit than to try to keep Bailey locked in my office for the day, something we tried a few times. Bailey was not pleased.

He kept the premises rat-free and kept us company when we had to work at night. He greeted Larry, the first day care worker on the premises, every morning. He was so much a part of us that when we took pictures for a parish directory, Bailey showed up, even though he hadn't gotten a reminder postcard. He marched stately up to the photographer, his tail high in the air, and jumped up on the chair. The photographer looked at us. "What should I do?" he asked. "He wants his picture taken," we said. "Take it." Bailey's picture appeared in that parish directory and thereafter he got reminder cards when it was picture time.

Bailey had his detractors; those who were allergic to cats, those who didn't like cats, those who didn't think cats should be drinking the holy water, there were many that felt he didn't belong there. He often slept in people's cars, scaring the bejeebers out of them when he jumped on their shoulder as they were driving away. But for every one of those, there were five others who slipped me money for Bailey's food or who showed up with a case of Fancy Feast. And Bailey had an important pastoral role. Whether it was comforting a crying daycare child or striding into a tense meeting, he did his part to keep the peace both within and among his parishioners.

At no time was this more apparent than on 9/11. We were in the library for EFM that morning when the horrible news came. Our administrator's husband was in New York, at a meeting planned for the World Trade Center. A member of the group had a son who was flying that day. As we sat watching the television in horror and fear, Bailey moved from lap to lap as we stroked him absently. He showed up to help plan the service for the evening. And he attended and sat with those who needed it. Man, did we ever need him.

One summer, we realized that Bailey hadn't been seen for several days. The staff started making inquiries, but to no avail. Larry, Cindy and I divided up animal shelters and checked them daily. Weeks went by, but we wouldn't give up. We just couldn't visualize Holy Family without Bailey. Shelter staff looked at me pityingly on my daily visits, but I explained that a cat who drank holy water regularly had to have a few more lives left. During my visits to the Orange County shelter, I fell in love with a little tortie, which I finally adopted. The next day, three months after Bailey left, Larry called me at 7:00 am. "Guess who was waiting for me this morning?" he asked. Somehow I wasn't surprised. He was much lighter but otherwise in fine condition. We postulated that he had escaped a rainy Sunday in someone's car, which then drove him to Durham or Apex or Carrboro. It had taken him that long to find his way back to us, but of course he did.

The next phone call wasn't so happy. It was about a year later when our priest called to tell me that Bailey had been hit by a car. Cindy took him to the vet, but his injuries were too serious and he was put to sleep. Larry had found him waiting outside the daycare when he arrived that morning. Injured though he was, he came back to us one more time.

He rests, I hope in peace, in the church garden. There were those who wanted to get another cat, but I explained that you don't choose a church cat, they choose you. We were honored for a time to have Bailey in our communal lives and I look forward to seeing him again at the heavenly banquet. And I don't want to hear any silliness about cats not making it to the Kingdom. This cat drank holy water.

Best cat ever

her name isn't High Acuity

This has been quite an adventure. We have gone from a level II placement to Duke's ED to CRH, then to a PRTF in Winston-Salem. We had several unpleasant incidents with law enforcement agencies, who, although CIT trained, were very inappropriate and threatened me and her foster mom with DSS. The PRTF was unable to handle her, so they dropped her off at Baptist Hospital's PED, where she remained for several days because there didn't seem to be beds anywhere else in the state. Baptist didn't want her because she was too high acuity, but finally they had to admit her into their unit, where she remains because neither UNC nor CRH could take her. She has been off-line quite a bit, so they changed her BIP, which seems to be helping her; she isn't requiring nearly as many prn's. The unit Wii is a great motivator and one CNA in particular has really been a strong advocate for her during her time there.

While we were still in the ED, I brought in someone from CPPR who informed HHS. I do feel like her rights under ADA were not observed during this time, and that we could have very easily added a DX of PTSD to her already long list. It would be interesting to see what the ACLU would say about this. I hope this information will make it to our legislators, who may think they are saving money by closing down facilities, but they aren't. Medicaid took such a big hit on her stay in the ED; luckily in the unit, she will fall into Criterion 5. That is a relief to me. Her present medical team agree on her DX of DBD, ADNOS, and S-RELD. Someone had mistakenly given them the DX of RAD, which is the cheap and easy DX for a kid like her, but most people agree that isn't accurate. She was also assessed for PPD but they didn't feel like she fell on the AU spectrum. She has been visited once during this stay by the hospital GAL who checked to make sure I wasn't hospitalizing her so I could go to the Bahamas for R & R or something like that. My big frustration at Baptist is that they have apparently never heard of SOC and so I feel shut out sometimes, although that is improving. I have a great LSW at the hospital who is very helpful and a very kind medical student has called me daily to update me, although he isn't important enough to get his own acronym.

Our QP from our CABHA has been working hard to fill out applications to other PRTFs, even though she can't be paid for this work because that would be double-billing Medicaid. Another member of my CFT, also a QP and a LSW, is helping her, and my friend who works for MHA FAN is as well (I am on their PAC). We have to keep our LME, which is OPC, informed and keep her PCP up-to-date. Right now it's looking like the waiting list for a bed in a PRTF will be about six weeks.

I'm also concerned about where her LEA is, since she has an IEP (SED and OHI) that guarantees her a FAPE under IDEA, and she is not getting that. She needs to be receiving services from a SLP, but the hospital doesn't offer that since, in theory, they are short-term. I am hoping that she will be able to get ESY services in the LRE so she can catch up a bit. The hospital offers an IAEP, but it's somewhat cursory. I could call the ECAC; they are always so helpful, but our circumstances are complicated.

So there is the update. If you understood that, God preserve you. You are either working in a terribly broken system or you are trying to navigate your way through it.

Me? I spend my free time driving back and forth to Winston-Salem. I'm reading a mystery series where the house is always clean, there is always enough money, justice is always served, the ending is always happy, and they never use acronyms. And they have servants. I don't need any more realism these days.

Oh, and her name isn't High Acuity. It's Elizabeth and she is the little girl caught in this mess. That's her with her beloved cousin Lindsay, who isn't allowed to visit because she is JAC— "just a cousin."

Channeling Amelia

As a former English teacher and church worker, one might think it easy to predict what great literature I reach for in times of trouble and need: the Bible? Well…..sometimes, but it’s a lot of work to get through and discomforting more often than comforting. Shakespeare? I think he’s great, but he’s not exactly relaxing, and all those bodies! No, my guilty secret is that many of my sustaining beliefs, especially those I turn to in difficult times, come from Elizabeth Peter’s Amelia Peabody Emerson mystery series (bodies aren’t so bad when there’s a mystery attached).

The first book, Crocodile on the Sandbank, hooked me with its strong female characters as well as its almost slapstick humor. In the second, The Curse of the Pharaohs, Amelia’s son Ramses is introduced and then left at home while Amelia and her handsome husband head to Egypt to help a beautiful widow. In Lion in the Valley, Ramses begins to come into his own, and a pesky master criminal is introduced. The eighteen books progress through the years, becoming both more complex and well-written, while still maintaining their trademark sly humor, romance, and breathless adventure. In He Shall Thunder in the Sky, the Great War has begun and the now-grown Ramses goes undercover to expose a traitor in Egypt. My inability to put the book down and go to bed before 6:00 a.m. showed me how attached I had become to the characters and how deeply I cared what happened to them. It was in this book that the concept of weathering pain and tragedy first struck me; those are not words heard in a time and country where people just want pain to stop. We often feel angry and indignant over undeserved trouble and look around for whom to blame. But the Emersons weather the storm. The war does come to a close, but the political intrigue continues and so does the hunt for untouched tombs. The series ends—at least for the present—with the “true” story of the discovery of King Tut’s tomb in Tomb of the Golden Bird.

It would be easy, especially if one has only read the early books, to categorize this series as light mystery set in an intriguing place. But over the years I have found myself returning to them regularly for strength and solace. When a close friend was terminally ill, I sent her the first four and told her she needed to read them. A few weeks later, she called to tell me they had made her feel stronger and were there more? I knew they would help because they had the same effect on me. That’s when I realized there are life lessons to be taken to heart in this series. In a whimsical moment, I decided to write down what I called “Amelia’s Words of Wisdom”, a list that is posted in my house and referred to regularly:

—The right man is worth waiting for.

—A good cat can be a lifesaver.

—Even when chasing Master Criminals, you wash the donkeys first.

—Do what you love.

—Disregard silly social conventions, but uphold those that matter.

—Side by side and back to back.

—Ethical behavior, both personal and professional, is hard when so many choose other ways. You still do it.

—We all struggle with racism deep down inside.

—It is pointless to complain that the world is not what we want it to be; sometimes you have to compromise on what you accept from others and from life itself.

—The world has always been scary, and present problems have been a long time in the making.

—None of us is perfect, and people can be hurt by that. Accept it, try to fix it, and go on.

—There is humor even in the midst of tragedy.

—We can weather this.

—Sometimes I would like to beat someone over the head with a parasol.

My friend died, my struggles as a single parent continue, recession threatens, and war continues. I’m still waiting for the right man, but I have four cats who keep me sane when they aren't making me crazy. I remember Amelia’s insistence on washing the donkeys first when the house starts descending into disorder. I work to behave ethically, even when it doesn’t pay. The world and my life is what it is, but I CAN weather this and laugh about it as well. And though I’ve never beat anyone over the head with a parasol, I’ve sure daydreamed about it.