Friday, December 21, 2012

Bringing A Snow Cone To Hell

Kacy and I have visited our first hospice/Transitions* clients together. They are three adults in a facility for people with dementia -- a small neighborhood home in my metropolitan area. Severe dementia can be a primary diagnosis for hospice, though two of my three clients also have cancers. The setup for our visits is most of the house's residents are gathered in the living room, and I visit with all of them who are alert even though my primary focus is working with the three clients of my hospice agency.

The title for this post came from a comment my husband, David, made when I told him about my first visit to the facility. It seems to have very little stimulation for residents, and they really reacted to the presence of the dog. "It sounds like you brought a snow cone to hell," David said. The Transitions client is the only one who can still speak, but she has no interest in Kacy or me and sleeps all the time. The first hospice client, "Lila," is very awake and alert and took a keen interest in Kacy. She pets her quite a bit, and interestingly, when I gave her a stuffed animal to hold when another resident was holding Kacy, she threw it down and gave me a look like, "You are not going to fool me with a stuffed animal!" Lila spends a lot of time picking Kacy up on the couch and putting her back down again, as well as clipping and unclipping her lead to her collar. Lila, Kacy, and I also take walks around the facility together. On our first visit to the facility, a nurse and social worker from my agency met us and said that Lila was far more animated in Kacy's presence than she normally is, so that was gratifying.

The second hospice client was even more interesting to me. "Dr. White" is a 60-something year old physician also with advanced dementia. He also no longer can speak and has a very flat affect, until he gets a hold of Kacy. Seeing him transform with her is almost as close to a miracle as I've ever witnessed. He strokes her and touches her, burying his face in her fur. Most touchingly, Dr. White kisses Kacy so tenderly. This is a man who has lost the ability to express affection in any other capacity, according to his caregivers, yet he kisses the dog. The first time I saw this I almost burst into tears on the spot, but luckily held it together.

I was thinking about why animals are so great for dementia patients. Dr. White had small dogs earlier in his life, so maybe holding Kacy triggers warm fuzzies for him. Additionally, it occurred to me how hard it must be if dementia patients want to speak. There is a chance they want to, but just can't. Me talking to these patients puts an expectation of a response on them; Kacy demands no such response. Dr. White does not want to let go of Kacy when she's there. When I separate Kacy and Dr. White so she can visit the other residents, I assure him I'll bring her back to him, and whenever we leave I tell him that I'll return with her next week.

Whenever I tell people I'm a hospice volunteer they ask me if it is depressing. I am new to this, but at this point, the severe dementia I work with is far sadder to me than someone dying from disease.  Dementia patients return to a childlike state, and I see even well-meaning caregivers treating them like toddlers in adult bodies, and it makes me very sad. Dementia ages people severely: both of my hospice clients are in their 60s and look much, much older. There is a 65 year-old woman in the same facility (with a 25 year-old daughter) who became symptomatic at age 55. The patients in the facility I visit are safe and clean and well-fed, but I don't see a lot of effort going to keeping them stimulated. Perhaps this is more than we can ask staff earning minimum wage to do. That said, I handed Dr. White a ball of yarn to play with, which he did eagerly. This is the kind of accessory the facility could keep around, but doesn't. Witnessing patients transform when they are handling Kacy is, as I said, as close to a miracle as I've seen. I have no illusions that the patients remember me the second I walk out the door, so I am not getting to build intimate relationships with these clients. However, I also have no doubt that for the time the dog is there, their lives are better for those moments. For that reason, it is a privilege to bring a snow cone to hell.

*Transitions is a pre-hospice program for patients who are very ill but who don't yet meet hospice criteria.

Tuesday, December 11, 2012

Volunteering With Kacy

Kacy in her volunteer uniform
I have discovered a new passion: volunteering with my little Norwich Terrier, Kacy. I've always considered her therapeutic, because her raison d'etre, besides eating, is cuddling with humans. She craves contact with people in ways I've never seen in a dog.

I first heard about P.A.L. (People. Animals. Love.) from my primary care doctor a few years ago. It sounded interesting, but Kacy was too pugnacious with other dogs in her youth. When it became evident to the hospice organization I'm volunteering with how obsessed I am with Kacy, they asked me if I would consider having her certified by P.A.L. so she could accompany me on hospice visits. She is a senior lady now (nine and a half years old), and has chilled out considerably, so we decided to give it a try. P.A.L. is not a therapy animal organization, so they have a more attainable standard for their pet volunteers. Kacy had to go on an orientation where she demonstrated her sociability and her ability to respond to basic commands like sit, stay, come, and heel. Of course, we had to provide records showing she was current with her vaccinations. We then had to go on two evaluation visits, which are real visits with other established P.A.L. volunteers. The team leader watched how we each handled ourselves and had to sign off on a form saying we were a good fit for this type of work. Luckily, Kacy and I passed. We did both of our evaluation visits at a nursing home in our city, where we continue to volunteer. You'll notice Kacy wearing her P.A.L. bandanna in the photo. When we volunteer with P.A.L., other dogs and their handlers are there, and we are building a rapport with some of the other regulars, including Romeo, the amazing skateboarding Sheltie.

Sunday was our third visit with P.A.L. to the nursing home, and we are starting to build relationships with the residents who remember us. There is a charming woman who loves dogs of all sizes. Another 98 year old resident always proudly tells me her mother was a nurse for President Roosevelt, and that she herself worked for the federal government for 40 years. There are also non-verbal residents who also respond to the dog. If you've never seen this happen, it's amazing: people who otherwise don't respond very well can get "woken up" by interacting with an animal. Nowhere have I seen this more dramatically than I did when I volunteered at a nursing home with my Westie, Arthur, in high school. There was a woman who had a massive stroke who lay catatonic in her bed except when we put Arthur in it. Then, she would start to moan with pleasure and stroke him. The nursing staff would gather around to watch this because it was literally the only time this resident interacted with anything. I guess animals touch some deep place in our brains. At this nursing home, there are residents who don't speak but stop to pet the dogs. There are others who can't speak clearly anymore, but clearly enjoy cuddling Kacy on their laps.

The point of this work is not to have people make a fuss over the dog per se: Kacy is the bridge between me and other people. She opens up doors that I can't open by myself. Another example of this is our literacy work with kids. We went to the local library last week to let children practice their reading with dogs. There is a trend to use pets to help in this capacity, because many kids feel judged when they read to people; not so when they read to dogs. It really warmed my heart to have a 12 year-old (reading at a much lower level) read aloud to Kacy. It would not have appealed to her to read aloud to me, but she was keenly interested in snuggling with and engaging with the dog.

This has done wonders for my relationship with my little dog. I always enjoy her company, but it has reinvigorated our relationship to do this service work together. Once fearful of the car, now when I announce that we're getting in it, she darts down the stairs. I love seeing how she brings people out of their shells, and I just enjoy doing things with her. I am eager to see how Kacy does on our first joint hospice visit tomorrow. 

Thursday, December 6, 2012

Hospice Volunteer Training - Day Three

My final day of hospice volunteer training started with a long safety lecture all about infections and universal precautions on how to prevent them. No joke, my notes on this lecture state, "Please enclose me in a plastic bubble." Most of this lecture could be boiled down to three important words: wash your hands. At the end of the lecture, delivered by a registered nurse, we were treated to a tuberculosis test. Thank God, I didn't react to it, because I've heard dealing with the D.C. Department of Health on this matter is a pain in the arse the likes of which I've never experienced. Yes, that was my chief concern, not testing positive because I might have been exposed to TB.

The second segment focused on legal issues at the end of life, such as advanced directives, appointing a durable power of attorney, and living wills. I learned a surprising statistic: only ten percent of us die suddenly. The rest of us have a slow decline, and are likely to end up in medical situations requiring delicate decisions. I found this unit emotionally difficult, because I think that too many of those situations are game-time calls. I would find it very difficult to lay out my final wishes for a death scenario I can't even begin to imagine. Luckily, you do have the option of signing a statement in an advance directive such as, "I realize I cannot foresee everything that might happen after I can no longer decide for myself. My stated preferences are meant to guide whoever is making decisions on my behalf and my health care providers, but I authorize them to be flexible in applying these statements if they feel that doing so would be in my best interest" (that is from the Maryland Advance Directive, available here). The one immediate point I took away for myself is that I need to ask someone to be my local backup in case my husband wasn't available.

The social worker who gave the presentation on end-of-life legal issues also reminded me of the Five Wishes, a simpler way of letting people know how you'd like medical issues to be handled at the end of your life. This is valid in 40 states and the District of Columbia. Regardless of how you choose to document your end-of-life preferences, please do so, and don't wait until you think it's "time." People die at all ages, sadly.

The last unit of my hospice volunteer training was all about working with patients with dementia. I need to re-read this section of my manual, because my first hospice assignment starting next week will be with three patients with the disease. We were taught not to make demands of dementia patients that they can't handle. For example, it is less taxing on them to ask, "Do you like watching TV?" than to ask, "What is your favorite TV show?" The social worker/nurse emphasized that when working with dementia patients, you're obviously not going to be cultivating long-term relationships (I realize this is relative, since we are discussing hospice) since the patients likely won't remember you week to week. Thus, presence is key. My personal feeling about this is that if I make the life of a dementia patient at all better in the moment, then my visit is a success, so I am not overly bothered by the absence of any lasting connection with me on their part.

Finally, we had paperwork galore to fill out (like permission for the background check), as well as a tutorial about the reports we have to file within three days of seeing our clients. My perception of the 20 hour training was that they did a great job. I loved hearing from the people who do these hospice jobs, and the material was always interesting and felt relevant. I think a piece of me wanted them to do a play-by-play of every scenario you could encounter, because I crave this kind of black-and-white guidance in general. Of course, we all know that life is nuanced. You can't script encounters, and I think the way you get to be "good" at being a hospice volunteer is by doing it. I am eager to start next week and will let you know how it goes.

Saturday, December 1, 2012

Suffering and Service

"To go into the dark with a light is to know the light. To know the dark, go dark. Go without sight and find that the dark, too, blooms and sings..." -- Wendell Berry

"You can argue with the way things are. You'll lose, but only 100% of the time." -- Byron Katie

The last three weeks have been immensely challenging for me. I am in the middle of a pain flare, and not my usual pain: this is a new back pain felt deep in my butt that makes it very hard to walk, shift position, or even turn over. The suspected cause is ligament laxity, which has been a constant issue for me. This laxity and the numerous aches and pains it causes is the reason I'm getting prolotherapy, a procedure in which a physician injects dextrose to tighten the ligaments. The principle behind this therapy is that you irritate the tissue initially, and then it responds by tightening up. This is the only non-surgical way to tighten a ligament (I've had surgery to do this in my ankle). My last prolo session was actually done with Platelet-Rich Plasma (PRP), in which my wizard doctor added my blood to the prolo mix to increase the inflammation factor and healing potential. Let's just say, it definitely increased the inflammation factor. There's no way to know, but there is a chance that I've had a temporary setback from the procedure. I'm at week 4 after the PRP and you typically don't see any positive effects until week 6. Often, there is a loosening before the tightening, and there is a good chance that this is what is causing my current pain.

The expectation is that this will pass, but in the mean time it is truly miserable and infuriating. I have had countless chiropractic and orthopedic adjustments, trigger point injections, and just yesterday, sacroiliac joint cortisone injections to try to lessen the pain. Drugs of any time are a joke; you may as well be giving me a placebo. So, in the meantime, I have to tough it out and give myself high doses of compassion.

You would think that with all of my issues, I would be no stranger to pain. But as a friend of mine with multiple health issues said to me earlier this week, "Whenever it's a new part of my body, I really freak out." I related to that. I know how to manage my fibromyalgia and Lyme pain, but the back pain is really frustrating. Worse than the discomfort is the impact it has on my life: walking even short distances is painful, as is bending down, like I do 100 times a day to pick up the dog, do laundry, or pick up my shoes.

The interesting lesson of this pain flare is how much service helps my spirit when nothing can soothe my body. I have been throwing myself into it as of late, volunteering many hours with a number of charities that are meaningful to me. On Thursday, I had the privilege of sitting with a very ill child who has been in the intensive care unit at the hospital for several months. I was in excruciating pain, but the truth is, I am hurting wherever I am. If I had stayed home, I definitely would have been stuck in a lot of "poor me" thinking. At the hospital, at least I was providing service for the patient and her family. Getting out of my head really helped me, probably a lot more than I was helping anyone else. One of the biggest lessons for me as a chronic pain patient is that there is a world of difference between pain and suffering. Staying at home, wallowing in my pain leads to suffering. When I am doing volunteer work, I might be in pain, but I am definitely not suffering. This insight is new to me, and is the darkness that "blooms and sings," as is so eloquently stated in the Berry poem excerpted above.

Service work gets me out of my head, and bonds me to the greater community of humanity. It also can be a good way to keep my situation in perspective. I say this not to minimize what I'm experiencing, because it really sucks. However, it is helpful to be able to hold it in the larger awareness of the suffering other people are experiencing.

Sunday, November 25, 2012

First Hospice Visit

"Volunteers ... can reap many gifts depending on how fully present they are during each visit, how empty they are are of any expectations or agenda, how capable they are of accepting the individual unconditionally and how comfortable they are simply sitting in the silence. So much can be communicated without words, and in fact, quite often a patient is too tired or too weak to talk. Just the presence of a caring companion at the bedside can convey enough serenity to bring comfort and ease some of the fear and loneliness of dying." -- Mary Jo Bennett, "When Autumn Comes: Creating Compassionate Care For the Dying," p. 100

I couldn't have asked for a better patient than "Janice" to initiate me as a hospice volunteer. I was filling in for Janice's regular volunteers, who were out of town for Thanksgiving. I was nervous as I entered the nursing home to see her; so much so that the Director of Nursing said to me, "You're out of breath. Were you running?" Janice is an elderly patient dying from cancer and has no surviving family. Fortunately, she rated her pain a 0 on a scale of 0-10.

When I got to her bedside, Janice was eating and said, "I'm so glad you're here. I was beginning to get lonely." That made me feel like whatever else happened during that two hour visit, me being there made a difference to the patient. I cut up her potatoes so she could eat them. Janice told me I looked like Bette Midler, and we talked about Thanksgiving in particular, cooking in general, the weather, flowers, and other sundry things. Janice expressed her appreciation for how nice the hospice I'm volunteering for has been to her. After 45 minutes, Janice apologized and told me she needed to take a nap because the medication she takes makes her sleepy. I told her she had nothing to apologize for, and that if she's tired, she should rest. Janice woke up a few times from her nap, always smiling when she realized I was still there. Twice, she apologized again for sleeping, and worried that I was bored. I told her I had books, an iPad, and knitting, so there was no chance of me being bored. I gently woke Janice up before I left to say goodbye and see if she needed help with anything before I left.

I learned three important lessons from my first hospice visit:

A. Being there really matters. Janice said that plainly when I got there, and then her face conveyed it every time she woke up from her nap and realized she wasn't alone. How cool it was to get home and read the above-quoted passage from "When Autumn Comes" (a must for hospice volunteers), which echoes this experience, especially in the last sentence.

B. Being silent is very hard. I found myself wanting to make small talk with Janice. I give myself a "B-" in that regard. I will need to work on letting the client always initiate conversation. This gives them control over whether they want to speak or not, and especially if they are actively dying, they might not want to talk. Second, keeping my mouth shut allows them to choose the topic they want to converse about. If I was going on about Thanksgiving turkey and Janice had really wanted to talk about her fears of dying, I would have precluded that by my chatter. On the other hand, if I had forced a conversation about death and Janice wasn't interested in talking about that with me, that's not cool either. I can tell that to be a good hospice volunteer, I will need to get very comfortable being silent. Bennett's excellent guide for hospice volunteers gives several suggestions for things to do to with a silent patient, including prayer, meditation, and gently stroking the patient's forehead or hair.

C. Leave earlier than I think I need to. I was rushed getting to the nursing home, and it stressed me out. It would have been better to be there 10 minutes early so I could have relaxed and better gathered myself before visiting the client.

Visiting Janice was a pleasure, and I look forward to many more assignments as a hospice volunteer. Truly, it felt like I was doing what I was meant to do.

Tuesday, November 13, 2012

Hospice Volunteer Training: Day Two

"Tears fall, but why am I crying? 
After all, I'm not afraid of dying. 
Don't I believe that there never is an end?" -- Iron Maiden, "Hallowed Be Thy Name"

Day two of hospice volunteer training covered the emotional and spiritual needs of the dying. I learned that only ten percent of us will die suddenly; the rest of us will have to deal with some protracted death. Hospice believes that this dying process can be a meaningful stage of one's life and endeavors to make it so. One of the biggest take-aways from my training is to get hospice involved early, so families can take advantage of all of the services they offer. If you wait until someone is "actively dying" (really nearing the end of life), they are not going to feel up to utilizing the chaplaincy, social work, and volunteer time that can make this journey a more pleasant one. For example, we had a panel of current hospice volunteers come speak to us. I was touched by a gentleman in his 70s who said, "I try to find the thing that the patient has lost and in some way bring it back to him." For example, one of his patients loved poker, but hadn't played in years. The volunteer started playing poker with him on his twice-weekly visits, and other men from the floor of the assisted living facility joined in! I was so moved by this man's dedication.

The hospice volunteer coordinators did an excellent job with this training, and provided us many relevant articles in our large binders. The section on the emotional needs of the dying was intense, but also informative. The most powerful article, to me, was written by a doctor who lost her six year-old, Liza, to cancer. It was a beautiful illustration of how hospice care could ease this girl's death for the patient and her family. The article goes into detail about how Liza wanted to die and how thoughtful hospice care enabled that . One of our training exercises was to brainstorm about our "ideal" deaths, inasmuch as there can be such a thing. None of us is getting out of here alive, and there is a 90 percent chance that you will not die suddenly, so it's worth putting time into thinking about this, and more importantly, sharing your preferences with your loved ones. Everyone agreed the first goal was to minimize pain. Beyond that, here are my wishes:

To die at home, in bed, surrounded by close family, my best friend, and my dog(s). I would like there to be candles lit, and I would not like music (not even my beloved Iron Maiden). I would like my sheets to be clean. I will definitely want some spiritual reconciliation near the end of my consciousness: saying the viduy (confession prayer) with a rabbi whom I like, and meeting with a meditation mentor or teacher.

Other people participating in the training said they wanted music, specifically Bruce Springsteen. Some people thought less about atmospherics and more about things like ensuring there would be no family drama during their deaths, and knowing that they will have helped their daughters plan their future weddings.

We talked a lot about how to conduct oneself on a visit, such as what to talk about and how to behave. We did role-playing where we acted out different scenarios, like a patient's brother asking you out (!) or having a patient ask, "Why is this happening to me?" Social workers talked extensively about preparing yourself mentally for entering a hospice patient's home and the importance of leaving your baggage out of the visit since they have enough problems. This is a good reminder for an over-sharer like me. They even recommended specific techniques to kind of clear yourself before you enter the home and enter into a mindful presence to be of maximum service on your visit. We also discussed the importance of self-care for volunteers since this is stressful work, and the importance of healthy boundaries. We were told many times to block caller ID on our phones when we call the patient or family and certainly not to bring any patients to our homes.

To try to cultivate empathy and drive home the hospice patient's experience, the trainer conducted an exercise in which we wrote the following on 16 sticky notes: your four most valuable possessions, the four most important people to you, the four roles you value most and the four activities you most enjoy. You then laid these stickies out in front of you, and the volunteer coordinator walked around and randomly took them away from you one by one and crumpled them up. The point was to drive home the reality that hospice patients lose all of those things. Many people were deeply moved by this exercise, and one volunteer even had nightmares about it and couldn't sleep last night. However, I found it a little cheesy. I kept thinking, "My role as a wife wouldn't go away if I were in hospice, nor would I lose my wedding ring if I were dying." As for losing the ability to perform activities I enjoy, because of my debility from my serious Lyme Disease infection, I did lose the ability to do nearly all of my favorite activities, and others that aren't favorites but are critical to independence, like driving. Even though this sticky note exercise did not resonate with me, I still appreciate its message that people dying are rapidly losing control of things they hold dear.

In addition to discussing emotional needs of the dying, the second focus of the day was on their spiritual needs. One of the two hospice chaplains came and explained his job to the volunteers. He was really cool, and explained that he takes a very broad view of spirituality, which he explains to patients. For that reason, he ends up visiting with many people whom do not think of themselves as religious. Most people feel connected to something bigger than themselves, even "just" being part of a community. To this rabbi, that connection is the essence of spirituality. The rabbi brought a lot of insight into how to speak to the dying. I thought it was interesting that he often ends up working with people who are already very involved in their church or synagogue, because their own clergy people are overextended or because their minister or rabbi said, "You should view me as a generalist, and the hospice chaplain as the death specialist. Work with him, too."

Last but not least, on day two of training, we got our mandatory tuberculosis test. Ouch! It was a very long and emotionally intense day, but I felt like it did a lot to get me prepared to be a hospice volunteer.

Monday, October 29, 2012

Hospice Volunteer Training - Day One

Yesterday was my first day of training to be a hospice volunteer. It was really interesting, and I think it's going to be a very rewarding volunteer experience. Some people have asked me why I'm putting energy toward this. It sounds very cheesy, but it feels like a calling. My father died painfully of multiple myeloma, and his doctors at the Mayo Clinic referred him to hospice when he exhausted his treatment options. Unfortunately, his wife had strong cultural prejudices against hospice, and refused his admittance. I believe that hospice would have made a difference in his death. I admire the whole-family approach to hospice: the people who receive care are the hospice patient and his/her family. I also admire the hospice philosophy, which addresses the physical, emotional, social, and spiritual needs of the patient.

Unfortunately, I have a lot of recent experience with grief and dying, and I think I can put that to use being of service to hospice patients and their families. It was meaningful for me to help my father die; it felt like critically important work. My experience grieving my pregnancy losses and informally counseling other couples dealing with the same issue is another thing contributing to my desire to do hospice work.

One of the coolest things about hospice volunteer work is that it is taken very seriously by the hospice agencies: any hospice that receives Medicare funding (most of them) must fulfill five percent of patient care hours through volunteers. Therefore, Medicare requires this 20 hours of volunteer training that I am going through. I also had to provide three references and consent to a background check. Since the nurses only start visiting patients very frequently as they near death, the volunteers provide eyes and ears on the patients in between clinical visits. When I complete my training, I will be matched with a home hospice patient whom I will spend at least two hours a week with. You are there for them, so they guide the activities. Many want to be read to. Some want to sing with you, or listen to music. The volunteer coordinator was happy that I knit, because some patients want to either knit with volunteers, or watch them knit if they can no longer craft themselves. The volunteer coordinator's dad was also a hospice patient, and all he wanted to do with his volunteer was argue about politics! They match you up. 

The first day of training covered the history and philosophy of hospice. It was pretty inspiring to learn about Cecily Saunders, who founded the first hospice in London in 1967. Saunders was a nurse who was bothered that dying patients weren't getting the specialized care they needed. She recognized she wouldn't get the respect she needed to make significant changes to the system without a medical degree, so at age 33, she went to medical school.

The volunteer training covered a lot of topics, including the need to be non-judgmental, because patients and families react to dying differently, and because people run their households differently. An interesting point they brought up was patient use of marijuana. They said we can't touch it, but basically, they look the other way. Really, how cold would you have to be to call the cops because a terminally ill patient was smoking weed? If you would, you're probably not a good candidate for hospice volunteer work!

Because I have an interest in medicine, the most interesting part of the training for me yesterday was when a hospice nurse came to talk to the volunteers for an hour. She got into a lot of the clinical issues she handles and how the volunteers play into the care team. The nurse shared stories from her 20 years working in hospice, and talked about the satisfaction she gets from her job. She said that one issue she sees a lot -- especially with Jewish hospice clients -- is food issues coming up when someone is dying. It is natural for dying patients to eat and drink very little, which alarms families. Apparently, it really alarms Jewish families, which have internalized the message that "food is love." The nurse described how this comes up and how they handle it, and she told volunteers how to address it if the family is distressed that the patient isn't eating. Forcing food and liquids actually makes the patient's death more painful, as the body can't process the waste products efficiently.

The primary goal of physical care for the hospice team is making the patient's death journey as painless as possible, so the nurse discussed pain management and people being freaked out by hospice's use of morphine. As someone who believes pain is under-treated in this country, I was totally on board with this.

Unfortunately, the second and third days of volunteer training were delayed due to Hurricane Sandy, so I will have to fill you in on those mid-November. I'm eager to have it done so I can be assigned to a patient. I really look forward to being of service in this capacity.

Monday, October 15, 2012

Agreeing To Disagree

This is a post from my other blog on the Georgetown Patch about Gallaudet University's recent decision to place a veteran administrator on leave because she signed a petition to put gay marriage to a vote by the electorate in Maryland.

Friday, October 12, 2012

Didn't I See This Movie?

I had a surreal experience on Kol Nidre night (the night when Yom Kippur begins). A young woman came up to me at synagogue and said, "Do you remember me?" I had supervised her immersion in the mikvah, a ritual bath, immediately before her wedding because the attendant scheduled to be on duty didn't show up. The night was very memorable for me because I had to be at the surgical center very early next morning to get a D&C for my third miscarriage; the last place I wanted to be was at the mikvah with a happy bride, but it was rainy and I didn't want her to wait any longer for the no-show. Anyway, it was this woman who approached me at synagogue. She told me how grateful she was that I showed up that night in general and all the more so, because she was pregnant. Now, in the movie version of this, I should have been, too: seriously, dragging myself out late at night in the middle of a tragedy to help this woman with a mitzvah (commandment) meant to help you conceive? It felt like the setup for some positive karma coming my way. Alas, the world doesn't work like the movies.

I think about my infertility more than I'd like to admit. I wish I didn't, but it's hard to not reflect when I see pregnant bellies at synagogue, or when I have a sweet interaction with a neighbor's kids. On Rosh Hashana I thought about our second baby, who was due then, and when someone told me her due date was Jan. 7, I thought of our third kid who was due Jan. 6. The one thing I can tell you is, infertility sucks. So much so that my friend who has cancer told me that he found infertility more challenging in many ways than cancer. His experience was that it was certainly more lonely. "People rally around you when you have cancer. That's not the case when you're experiencing infertility," he said.

One of the suckiest things about this is seeing myself turn into a person with behaviors I never, ever wanted to have, like avoiding pregnant friends. I think it is so petty and lame, yet find myself doing it anyway. I am trying to have compassion for myself around this, because I know my poor brain is trying valiantly to protect my wounded heart. I know this is a phase and it will pass. In the meantime, there is always Facebook.

Another eye-opener for me is how suffering related to infertility isn't related to how long you have been trying to conceive or how long you've wanted to be a parent. I was very late in wanting kids, then was thwarted by a very advanced case of Lyme Disease. It is hard to make love, let alone seriously contemplate parenthood, when every nerve in your body is on fire and you can't use your arms. For some (dumb) reason, I thought that would mean I would be less sad about our infertility, but that's not how it works. The heart wants what the heart wants, and furthermore, sometimes I have to encounter the second arrow of, "Well, if you had come to this sooner, things might be different." Feeling like there is a hole in your family is a lonely feeling, no matter how long you've been feeling it.

I am working hard to keep things in perspective, like by taking account of the tremendous blessings that I have, especially being happily married to my best friend. I cling steadfastly to the belief that you can be happy no matter your circumstances. I also do believe that everything will work out how its supposed to, whether or not I'm immediately happy with the results. Still, I can't help but feeling thwarted in doing God's will, as David eloquently wrote about, even as I have to concede that this may not be God's will for us. We'll see; it's definitely too early to make that call. David and I are definitely still in the game.

In the meantime, I continue to pray and take comfort in the struggles of the Jewish matriarchs, most of whom suffered infertility. I read Hannah's story in I Samuel and was moved to tears. I'm trying to use this fallow time as a time to work on myself and be of service to others. If you are the spiritual sort, please keep us in your thoughts and prayers.

Tuesday, July 31, 2012

Iron Maiden Concert

"I don't want to have as much energy as they do when I am their age. I want to have half as much energy as they do now." -- my husband, David, on Iron Maiden

One of the highlights of our summer vacation was seeing Iron Maiden in New Jersey on July 2. My first encounter with this band was from Matthew Martin, one of my biggest influences as a pre-teen. To me, Matt could do no wrong. He was cute, funny, smart, and above all, cool. If Matt thought it was cool, it was cool. Matt was the guy who got me into heavy metal, and for that, I will be eternally grateful. His room was covered in posters from heavy metal bands, and I eagerly drank their music in: Motley Crue, Kiss, and many others, except one: Maiden scared me because of Eddie, their mascot. He is drawn for teenage boys, not teenage girls, and Eddie grossed me out. So, I dismissed Iron Maiden as "too hard" for me. Cue that wonderful invention of the 90s, Napster: I decided to download a couple of IM songs, cuz what do you have to lose when they're free, right? I got "The Wicker Man" and "Run To The Hills" (note to IM if you are reading this: I promise, I have since purchased them). The melodic sounds of the former and the catchy riff of the latter appealed to me, but I was still totally into glam rock, and I assumed those two songs were aberrations and not indicative of Maiden.

What ignited my love of this band was the release of their single "El Dorado" off "The Final Frontier," their 2010 studio album. Eddie Trunk played it on his show and I was blown away, like mouth-hanging-open blown away. The song rocks. I was amazed by Bruce Dickinson's character vocals: "El Dorado" is about a hustler/huckster and Bruce nails that character. I could envision such a character on a Broadway stage. I was also blown away that a 30 year-old band was still kicking so much ass. This led me to investigate more IM, and the rest is history. The only benefit of not having discovered them earlier is that now I get to spend some time delving into their amazing catalog. Their melodic music, thoughtful lyrics and song themes really speak to me. Steve Harris writes about epic, mythic topics, and the band is quite literary. If my English teachers had played IM's "Rime of the Ancient Mariner" I would have paid more attention to that book. I also appreciate IM's thoughtful treatment of spiritual matters, such as in "Infinite Dreams." Years of listening to Rush, with Neil Peart's unending disparagement of religion, have made me a little sheepish about being a believer and a rock fan.

IM doesn't tour in the United States often, so we were bummed that they were playing the D.C. area on Shabbat, the Jewish sabbath, when we are unable to travel to a show, listen to music, or engage in the commercial activities that entail going to a concert. Undeterred, we scored tickets to the show in NJ. I had heard often that IM puts on an energetic show, and they didn't disappoint us. I was glad to hear some old favorites like "Phantom of the Opera," "Can I Play With Madness?" and "The Trooper," and learn some new ones, like "Afraid To Shoot Strangers." I enjoyed Bruce's bantering with the audience, like getting the crowd totally worked up about Independence Day and then saying, "Doesn't mean a thing to me. I'm British!"

The stage was just impressive. Eddies abounded. Oh, how they abounded: massive animatronic Eddies, Eddies as backdrops, huge puppet Eddies, and even air-inflatable Eddies. They didn't turn off the explosion machines, to paraphrase Butthead, and they had these fire-shooting pillars that were so hot, you could feel them from very far back. The band played for two solid hours. It would be unfair to not give a shout-out to Alice Cooper, the opening act. He put on a great show, as he has since the 1960s. He's still being resurrected after every "killing" on stage, too. Impressive! Alice and his touring band were energetic, and just on. I enjoyed hits from way back in the catalog, like "School's Out," as well as 80s resurgence songs like "Poison" and "Feed My Frankenstein." I thought he was a good warmup for IM.

Since buying an IM t-shirt and cloth tote bag at the show, I've noticed an interesting cultural phenomenon. IM fans compliment me in public. There aren't that many of them where I hang out in D.C., but when they're around, they say something. Today, a guy flirted with me outside the Rockville Metro station after eying my shirt, and a clerk at The Container Store complimented my tote. David has gotten the same treatment when he wears his IM shirt.

Sunday, July 29, 2012

Crazy Cruising (Oceans, Not Bars)

Continuing my thoughts on cruising, some of the cultural issues of the ship were really notable: they have a staff of more than 900 people for about 2,200 guests. Of those 900 crew members, 15 were American. I am convinced that the cruising industry is the only thing (barely) keeping the Greek economy on this side of solvency, because they seem to employ a huge number of Greeks. Truthfully, most employees are Indian and Malaysian, with many Filipinos as well. What was obvious to me was the great stratification of nationalities: all of the officers are white/European. All of the top dining personnel were also white and European, yet I didn't see a single white waiter. The same stratification exists in the hotel side of the ship as well; I didn't see any white stateroom attendants, the people who clean your room twice a day, make sure everything is in working order and to your liking, and turn down your bed at night, yes, with chocolates included. I asked a lot of employees about this, and they told me the separation exists socially as well, with people of most nationalities exclusively hanging out with others from their country. Please keep in mind, many of these employees work 13 hour days, and all ship employees work seven days a week, so there isn't a tremendous amount of social time if they want to sleep at all.

The thing I didn't grok about cruising is that it is its own culture, though I should've figured this out by the fact that there are two formal nights on board the ship, when people dress in black tie clothing. There are standards and rituals that seem to be unique to this form of transportation, and many of them are just freaking weird. The most notable example is the parade in the main dining room with all of the restaurant staff at the end of the cruise. They shut the drapes in the dining room to block out other distractions, blast music, flash lights, and literally have the dining and kitchen staff walk around the dining room while diners cheer and twirl their napkins in the air. It was honestly the strangest thing I've ever seen, yet allegedly it happens on every cruise ship and goes way back in history (though probably without the light and sound spectacle). It lasted about five minutes, at the end of which I asked David, "So, now do we kill them and eat their young?" It was truly bizarre, then the shades went back up and everyone acted normally.

As far as I can tell, everything that happens on a cruise ship happens for one reason: to separate you from your money. There is no limit to the amount you can spend on a ship. Coca colas start at $2.50, and all of the entertainment takes place in locations where it is desirable to have a drink, and would even be awkward not to. There is a whole floor of shops where they sell mundane tourist shlock, but also Faberge eggs and luxury watches and luggage. The Celebrity Millenium even had an authorized Apple reseller, so there were people buying iPads and MacBooks. The formal night plays into this: you dress up and then get your photos made for free. We bought a package at an exorbitant cost, and we never dressed in black tie.

There is no end of amusement on a cruise ship, and you can literally spend your whole vacation on the boat if you desire. There is some kind of performance every night on board. There is a house cast, which is quite good. I had to resist the urge to pull the cruise director aside and tell her that it is very ironic that a performance that includes "You Can't Stop the Beat" from Hairspray didn't have a single black cast member in it! There were various other acts, including a comedian and a very good magician named Adam Trent. My favorite performers were North By Northwest, an a capella group formed for the ship. They were really special, and we went to hear them a few times. I also really enjoyed the naturalist on board, who gave lectures on topics like glaciers and whales. He also narrated certain points of the journey. There are different games on board, like karoke, trivia, and a newly-wed/not-so- newly-wed game. They host daily fitness and dance classes, too. There are also daily AA meetings, those these are always inconveniently timed if you're actually off the ship for an excursion. The programming on the ship was so good, I always found myself trying to balance my energy between going and doing things off the ship, and doing things on the ship, too, that I wouldn't get the chance to do in my everyday life.

I have to admit I could get used to life on board. I enjoyed the hot tubs and pools, where we met a lot of fun people (and, admittedly, quirky couples). I loved having someone to tend to my room, and the ability to have cottage cheese, fruit, and hot tea delivered to my room 24 hours a day for free. However, it was also very awkward for me to feel "waited" on all the time, by people who depend heavily on passengers for their livelihood. I went back and forth between feeling like it was awesome they had a job where they earned such good money, to wondering if they were being exploited, and sad that they leave their infants for six months at a time to earn a living.

I would consider cruising again. It worked well with my energy/physical limitations, in that I always had the ability to get back on board if I was run down, and I got to see a lot of places without re-packing my things. What is sacrificed is any kind of depth, so I would prefer a cruise that docks for two days at some ports so you could explore the port city more thoroughly.

Friday, July 20, 2012

Kosher Cruising (Oceans, Not Bars)

I just got back from my first cruise and a lot of people had questions about how it went in general, and specifically how it went as a kosher consumer. My husband and I traveled with family on the Celebrity Millenium on a seven-day cruise of Alaska's inside passage (note: I found this blog, which details one passenger's experience of our cruise day by day, if you want photos of more details, and if my arms allow, I'll write my own reflections later).

Our biggest concern about this cruise, hands down, was the availability of food that meets our dietary needs. We keep kosher, and in addition, I don't eat gluten or sugar. Moreover, I have to weigh my food to treat my binge eating disorder -- meaning that combined foods don't work very well for me, i.e. I do much better with fish, potatoes, veggies than with a fish stew. If you just ask a cruise line for "kosher meals" you will get the disgusting airline meals. We weren't willing to cruise with that as our sustenance, so we upgraded our meal plan to Celebrity's Premium Kosher meals. These were strictly kosher, frozen, catered meals substantially upgraded from the regular airplane food that they serve you if you just specify that you keep kosher. Celebrity charged an extra $17 per meal per person for this service, but that airplane food is barely edible for anybody, and definitely does not work with my food plan, so it was worth it to us.

We had a whole hassle before our trip when we learned, quite by accident, that Celebrity had dropped their vendor for Premium Kosher meals. Panic ensued. Friends who have cruised have assured me that the ship's kitchen would cook fish double-wrapped in aluminum foil for kosher consumers (this would allow us to eat food cooked in an oven where non-kosher food is also prepared), but when we called Celebrity customer service to ask about this, they told us that this was up to the discretion of each ship's crew. Crap!

When we got on board with a ton of packaged food, we went straight to Guest Services to register our concern. We ended up meeting that night with Executive Chef Jason Baynor, who told us that "the most important thing" to him was that we were happy and satisfied. We worked out a system where they custom cooked our lunches and dinners for us every day; they actually have a portion of their kitchen separated with police-line-type tape that is covered in tin foil and reserved for kosher food, which we saw on a tour of the galley kitchen. Even better, they had brand new pans that they reserved for our use. For days, we ate delicious variations of fish, gluten-free starches, and veggies. When I got sick of fish, I ordered an omelet, and then Jason asked if his sous chef could make us Indian curries in the new pots, and that is where the fun began. For three nights, we had Indian feasts of fish curries, rice, vegetable curries, and naan made from rice flour, which was surprisingly delicious. Furthermore, Celebrity bakes all of its own bread on board, and the ice cream is made from milk, cream and flavors bearing reliable kosher supervision. Lucky David!

For kosher consumers contemplating a cruise who wouldn't be comfortable with this type of unsupervised kashrut situation, you have a decision to make: if you are one of these travelers who truly doesn't care about food and just wants to see the sights, you may be ok on a cruise. For me, I would have been furious and resentful choking down the airline food, and it would've ruined my trip. You've probably heard that a big part of cruising is the food. This is true, both in the sensual pleasure of it and the social aspect: you spend a lot of time socializing around food on a cruise whether you're with people you know, or with strangers. This is an important part of cruising culture, and I would be doing a disservice to pretend like our dining arrangements weren't important. They were huge in our enjoyment of our travels.

Chef Jason and his crew went way out of their way to bend over backwards to gladden our tummies and satisfy our complicated dietary needs. In fact, on two different nights, other diners in the dining room asked our waiter why they didn't see what we were eating on the regular menu and asked if they could get it too (answer: no). The last night of the cruise, I was speaking to the restaurant manager, who actually works on many different Celebrity ships, and he told me he knows his colleagues on the other vessels would be happy to do the same thing for us. Having this issue resolved so satisfactorily definitely means that we would be willing to cruise again, and truth be told, it was an issue of God giving us an outcome much better than we could've ever imagined for ourselves: the first night on board we had some of the remaining Premium Kosher food and it was less than premium. We ended up with delicious, freshly cooked food made to order! The staff was way more than grudgingly helpful; they seemed genuinely concerned and interested in making our dining experience good. The head maitre d', Lazar, whom I wanted to invite to live with us, told us that he was learning about kashrut (the noun form of "keeping kosher") to better understand his kosher clients. Interestingly, Lazar is Serbian Orthodox and said that his religion has many of the same restrictions as kashrut, such as requiring that you drain the blood out of an animal before you eat it. The point is, they really cared.

In other oceanic food news, weighing my food was difficult on the ship, as both the motion of the boat and the magnetic interference made both digital and spring-loaded scales less than accurate. I just had to do the best I could at any meal, and some were definitely smoother than others. The bottom line is, I didn't eat compulsively, and if you have been on a cruise, you know what an accomplishment that is! It is literally a 24-hour food fest; you can get pizza or a steak in the middle of the night at no cost to you. I attracted more stares than usual with my food scale, but the truth is, I'd rather be stared at for weighing my food than for being twice the size I am now. There were some shockingly obese people on the ship. Far from feeling condemnation, I just felt sad, because they were truly limited because of their size. I am so grateful that because of my recovery in OA-HOW, I am pretty darn average looking and am not limited by my body weight. David and I went dog-sledding on a glacier in Juno. The company that organizes this charges a hefty surcharge for people weighing more than 280 pounds. Given that my top weight was 250, I was close to that a few years ago. Someone who previously went on this excursion joked with me to "not lie about my weight" (they weighed you there, so that wasn't an option anyway), and I am so unbelievably grateful to not be at a weight where I'm even tempted to lie about it. Weighing all my food so precisely is a huge pain in the ass sometimes, but for me the choice truly is between that and being back at 250 pounds, or more. There is no question for me which is worse.

Wednesday, June 6, 2012

True Refuges

"Your lost Joseph will return to Canaan, do not grieve
This house of sorrows will become a garden, do not grieve

Oh grieving heart, you will mend do not despair
This frenzied mind will return to calm, do not grieve

When the spring of life sets again in the meadows
A crown of flowers you will bear, singing bird, do not grieve

If these turning epochs do not move with our will today
The spheres of time are not constant, do not grieve

Don’t lose hope, for awareness cannot perceive the concealed
Behind the curtains hidden scenes play, do not grieve
."  -- Hafez, "The Lost Joseph" (full poem here)

"I'm here without you baby, but you're still on my lonely mind
I think about you baby, and I dream about you all the time
." - Three Doors Down, "Here Without You"

I don't know how much more I have to say about the horrors of miscarriage, except to say that they seem to get exponentially worse. With one miscarriage, it's like, "Well, this sucks, but 25 percent of all pregnancies end this way, so we'll grieve, hope and proceed forward." With two in a row, it's like, "Uh-oh, I hope this doesn't indicate a trend. Just bad luck." With three in a row, you become a "serial miscarrier" and the stakes change. Our most recent miscarriage is like a gigantic hole in my heart. It feels like more of a profound loss, in part because it's our third blow of this kind in a year, and I think in part because we felt some relief that we heard and saw our baby's heart beat. Even though I still worried, that gave me some hope that things could be ok. Nevertheless, it turns out our daughter had an extra thirteenth chromosome, which is incompatible with life. Knowing this was a little girl, and not an anonymous "it" makes this even more personal and painful.

One thing this year-long curriculum in grief has taught me is how much of a precious gift it would be for all of us to give each other the gift of mindful listening. In our culture, "help" has become synonymous with "fix": people see David and me hurting and want to relieve us of our suffering, so they make offers of "help" from the reasonable to the sublime to the ridiculous. The people who have been the greatest help to me have been those who say, "This sucks. You are in the middle of something awful and unfair, and I am so sorry for you." Bless you. One of the reasons that you don't say anything when you enter a Jewish house of mourning is that there is nothing to say. Loss is ineffable.

All of my old complaints about the hurtful things people say and do in their attempts to "help" still stand, though I have some new complaints too. The primary one is women offering me advice for their fertility problems, which are not our fertility problems. There are many stages where reproduction can fail, and I find myself exasperated with advice (again, well-meant) from people who have a totally different problem we do. They don't realize that their suggestions are equivalent to suggesting Lupron, a prostate cancer drug, for a breast cancer patient. But hey, they're both cancer! To all you progesterone pushers: all the hormones in the world would not have negated an extra chromosome, but that will be a later post. I am not immune to this desire to "help"; God help you if you ask me about Lyme Disease, because you will get an hour lecture full of strong opinions! Then again, in my defense, Lyme and co-infections have one cause, though many presentations of the diseases. Infertility is quite a bit more complex since it can have different causes, many causes, or be completely idiopathic.

I am all about care right now for David and me. Frankly, right now, other people's needs come significantly below ours. In trying to determine how to best care for myself, I keep asking myself, "What and who are true refuges for me?" This has guided how I am spending my time and who I am spending it with. No refuge for Sarah, no Sarah. This means a lot of calls to me are not being returned, and that's totally as it should be.

To my great surprise, one of my most helpful refuges has been meditation. It is surprising because my meditation cushion is kinda the loudest place in the house nowadays. You wake up to what is when you meditate, and if what you're waking up to sucks, it really hurts! I listened to a dharma talk today by Sylvia Boorstein titled "May I Meet This Moment Fully, May I Meet It As A Friend." I've been repeating that throughout the day. Some days, like this morning, I was able to compassionately touch my grief in my meditation; other days, it is too intense, and I return to the traditional metta (loving-kindness/blessing) practice.

Loving, compassionate, close friends and family members have also been a true refuge, as have both of my spiritual communities: my Jewish one and my meditation one. I found out last Wednesday that our baby died, yet I couldn't imagine being anywhere other than with my sangha (meditation community). I was hugged by so many people, and got kind follow-up emails from people sending me metta and checking on me.

Little Kacy, our dog, is a true refuge, as always. And on a different wavelength, good TV, in moderation, provides much-needed distraction. What are your true refuges?

Tuesday, May 29, 2012

Wasted Time?

"Is it all just wasted time? Can you look at yourself when you think of what you left behind?" - Skid Row, "Wasted Time"

Unsurprisingly, I think a lot about miscarriage. I have been pregnant seven out of the last 12 months of the year. Not the fun, rewarding, feel-good parts of pregnancy I imagine, but the nausea, exhaustion, want-to-gnaw-my-arm-off-from-hunger first trimester. Although we saw Eddie the embryo's heartbeat -- a milestone in our personal pregnancy history --  we have a long way to go. I think I'll be able to exhale a little if I make it past the first trimester, but I know families who have lost babies literally in every month of a pregnancy, and through stillbirth, so I have no illusion that you're ever really out of the woods.

I think almost every day about the possibility of miscarriage. The other day I was thinking, "What would be the worst part about miscarrying?" I was a little embarrassed to note my answer to myself: "the wasted time." The nausea, hunger, exhaustion, and lack of libido would be more tolerable if I was sure they would pass, that they would just be way-stations on the way to a healthy kid. As they are, they have been the sum total of my pregnancy experience. I don't mean to sound ungrateful, because I'm thrilled I am pregnant! But I feel like hell, and again, I've spent more than half of the past year in that state. Staying in my first trimester feels like spinning my wheels. It seems fair to add that when I feel this bad, I don't do a lot of socializing, so I feel like I'm missing some opportunities on that front by spending all this time in first-trimester land.

God forbid, if I lost this pregnancy, I would, of course, be devastated beyond feeling like I wasted time. I passed some kids drawing with sidewalk chalk this evening and my heart almost exploded from wanting. But I know I could get through the loss, and I know I could get pregnant again, since that doesn't seem to be a problem. I am just sick of feeling stuck, of feeling like I'm wasting time. I want to move forward. Intellectually, I know that whatever happens will be a kind of moving forward, but that is a solution for the mind, and again, this is a matter for the heart.

Monday, May 21, 2012

Shared Sorrow, Shared Joy

"You have the pain, the sorrow, the fear within yourself; don't keep it for you alone. Allow the sangha, allow the community to embrace it for you. Allow the collective energy to help you to embrace it, because alone, you are not strong enough to embrace your pain, your sorrow ... If we allow the community to embrace us, then we will not sink into the ocean of suffering." -- Thich Nhat Hanh

May 17 was one of the most nerve-wracking days of my life. I was heading in for my third prenatal sonogram ever; the first two revealed that our embryos didn't take off, the cells never differentiating enough to create organs. I was expecting the worst at this one. My anxiety was palpable; I even sobbed in a public restroom the night before. I just needed an outlet for that anxiety to leave my body, and that night, it was in tears. I was looking for a way to process this anxiety, and one of my mindfulness teachers gave me a good suggestion: to tap into collective suffering as a way of making the container for my own suffering bigger. I think this is akin to Tara Brach's oft-quoted metaphor that if you are in touch with the whole ocean, you are less afraid of the waves.

So, I stopped looking at Wednesday's appointment as "my" ultrasound, and started thinking of all the women who have been on that same table I was going to be lying on. I broadened the thought to all the women having fertility issues everywhere, and more broadly, every expectant mom praying that everything would be ok with her sonogram. The exercise didn't stop there: I was able to relate my worry about the sonogram to all the suffering of the world, and I thought in particular about a dear friend of mine right now who is very sick. I can't explain why this helped ease my anxiety, but it did. It took me out of myself, and made me a part of something bigger, which, of course, I am.

Before David and I got out of the car to head up to the clinic, we prayed together, asking God for a favorable outcome to the sonogram, or the strength to get through this together if it was not a favorable outcome. I don't think anyone was more surprised than I was to hear our doctor say, "So, there's the baby, and you can see it's heart beating." Hearing that heart beat* was magical, though I could barely hear it through my tears of joy (and shock!)

The concept of sharing sorrow doesn't just exist in the narrow way I describe it above. It has helped me more than once to share my sorrows with all of the communities I'm blessed to be a part of. One of the starkest contrasts David and I noticed was the aftermath of my father's death vs. our first miscarriage a few weeks later. After my dad's death, there were about 70 people here a day to sit shiva with me. I found their presence comforting. We largely faced the miscarriage silent and alone, except for the few friends we notified. Several of them came to hang out and talk. Suffering of this magnitude is too big to be handled alone, and I am often saddened by the many women who tell me they have had serious fertility problems, miscarriages, and ectopic pregnancies and told no one other than their doctors. I am including women whom I know who are extremely close to their mothers, yet never tell their moms about these events. This kind of extreme secrecy only harms, in my opinion, never heals.

The concept of shared joy is as powerful as shared sorrow. In my immediate circumstance, experiencing my wider social circle's joy at our pregnancy is infectious and exciting. In a broader context, this is a skill I have had to work to cultivate over the past few years. My disability from Lyme Disease has meant the end to many professional and social opportunities that I used to enjoy. When you encounter that, your choice is to withdraw and become closed off and contracted, or to learn to cultivate joy from others' happiness. At times, it was very hard to hold this joy as most of my friends expanded their families as I was struggling with first having to delay childbearing because of my infections, and later, my inability to stay pregnant. Nevertheless, I have always found this goal worth pursuing to the best of my ability.

* Seeing the six week-old on this sonogram was powerful for me in another context: seeing and hearing that little heart beating brought me back to when I used to volunteer for Planned Parenthood in what seems like another lifetime. They drilled into us in the clinic where I volunteered that what was being aborted was "just tissue." Seeing the heartbeat in my sonogram reinforced my unease with abortion, and also made me understand why pro-choice advocates are so upset by Christian pregnancy counseling centers using early ultrasound to influence women's decisions about their pregnancies. It also occurred to me, seeing that beating heart, that it was "just tissue" -- the same way my heart, my hands, and my brain are also "just tissue."

Monday, May 14, 2012

Everything Zen? I Don't Think So!

Horatio: "Oh, day and night! But this is wondrous strange!"
Hamlet: "And therefore as a stranger give it welcome. There are more things in heaven and earth, Horatio, than are dreamt of in your philosophy." - Hamlet, Act I, Scene V, 159-167

"And therefore, as a stranger give it welcome." This quote from Hamlet came to me when I was doing my sitting meditation in my mother's garden this morning. I have had mounting anxiety because David and I are approaching our first ultrasound this week. It will be the six week ultrasound, the one where Preston, our reproductive endocrinologist, is looking for what he calls "early cardiac activity" of our embryo. Basically, this is the sonogram where we find out if our pregnancy has a chance. Neither of our others got to the point of having a heartbeat. This is really freaky, because we didn't know until weeks 9 and 11, respectively, that either embryo had died, even though both died around 5-6 weeks. The placenta, not the baby, is what makes most of those lovely pregnancy symptoms, and the placenta continues to grow even sans kid. So, I felt pregnant even though the baby had died. In any case, this is a BFD ultrasound.

I wish I could tell you that I'm all chill about it. That I feel like, "God's will be done," or "It's totally out of my control, so I won't worry." I have moments of grace, but much of the time I feel a knot in my stomach. I recognize that most of it is anticipatory dread: I have had two ultrasounds with disastrous results. As my friend said, "This is operative conditioning: of course you're scared! You've had two terrible experiences." I am definitely remembering "real but not true," though it doesn't always tame the anxiety.

This morning, I tried some of the other techniques I've written about, but none of them were hitting the spot. Then I remembered Tara Brach's "Power of Yes" meditation that she writes about in her book "Radical Acceptance." Basically, instead of doing what I (and most others) usually do -- direct a steady stream of "No, go away!" to anything I have aversion to -- I decided to say "yes" to it. I literally put my right hand on my pounding heart to soothe it, and my left hand on my solar plexus, which is where I seem to most keenly feel anxiety in my body. I said to my anxiety, "Yes, I see you. I understand why you are here." I directed a steady stream of "yes" to it: "Yes, it's ok that you are here. Stay a while, if you need to. I can handle you. Yep, I see you and I feel you." It really took the edge off of the anxiety: I'd say it lowered it from a 7 to a 3, which is a big improvement. Even thinking about this experience now is comforting to me. I instinctively want to run from the sensations of my worry and anxiety; it feels so uncomfortable to me. Spending just 15 minutes dwelling with it today -- welcoming the stranger, to paraphrase Shakespeare (or Rumi!) -- reminded me that I can handle it. I may not like the feeling, but I can be with it, and be ok.  

I will also give a nod to the power of positive distraction when you are worried about something you cannot change. I am losing myself in my knitting and Downton Abbey, and those activities soothe me and distract me in healthy ways. However, these types of distractions feel much more wholesome to me when held in the larger context of awareness; it feels good to pay my seemingly unwelcome  "strangers" a little mindful attention, too.

Thursday, May 10, 2012

Anxiety and Meditation

"Anything can happen
From the point of conception, to the moment of truth
At the point of surrender, to the burden of proof
From the point of ignition, to the final drive
the point of the journey, is not to arrive." -- Rush "Prime Mover"

My anxiety about losing this pregnancy was extremely high yesterday morning. I was catastrophizing things, envisioning our first sonogram ending up just like the previous ones: no baby, two broken-hearted parents. I was really lost in my stories about this, and boy was I suffering! I tried a few tactics to manage this. One, intellectualizing it: "Worrying isn't going to help, so stop. You can't control it." Two, praying for God to remove my anxiety. This technique rarely helps me and it didn't help now. Three, applying "real but not true." That took the edge off, but I remained restless and discontent.

I sat down for my morning seated meditation, and Tara Brach's voice came into my head, with one of her catch-phrases: "What is asking for attention?" I got in touch with what was behind my anxiety, which was the intense longing to be a parent, and for this baby to thrive. Instead of getting lost in what that "meant," which would be more stories, I focused on the sensations of that in my body. The longing manifested clearly in my heart area, and had a distinct color, sensation, texture. I just paid attention to those sensations for about ten minutes, noting them, and not either grasping for them or pushing them away. Just holding them lightly with a tender quality. Evidently, that is what was asking for attention, because my anxiety evaporated, and I was able to stay in the present moment and out of anxious obsession for the rest of the day. What sweet relief!

I have a belief that we all need tool kits for different situations. I don't have one pain management strategy to manage my chronic pain; if I did, I'd be up a creek. This is why people who rely only on pain medications for pain relief rarely find any relief. My pain tool kit includes: warm baths, meditation, exercise, sleep, massage, Feldenkrais, and other techniques, in addition to medication, which I use too. I am coming to understand the same principle applies to my anxiety: I can't have only one tool for it (i.e. Xanax) either, nor can I apply just one meditation technique to it. The technique described above worked yesterday. Sometimes, I need to focus on my anchors (breath, sounds, or bodily sensation) to ease my anxiety -- I literally need to distance myself from it in this way. Sometimes I use a "titrating" technique taught to me by some of my teachers: I pay attention to the bodily manifestation for anxiety, usually in my chest and throat, for a few moments. Then I titrate my attention and apply it to a neutral place in my body, like my thigh, where my anxiety doesn't manifest. Sometimes, my anxiety is too severe for seated meditation at all, and I need to do more walking meditation or mindful movement.  I'm grateful to be developing my tool kit, but it felt like a huge victory yesterday to get such dramatic relief from just opening to what was legitimately asking for my attention.

Monday, May 7, 2012

Real But Not True

"They say it's never too late
To stop being afraid
And there is no one else here
So why should I wait?
And in the blink of an eye the past begins to fade

So have you ever been caught in a sea of despair?
And your moment of truth
Is the day that you say 'I'm not scared'

Put your hands in the air
If you hear me out there
I've been looking for you day and night
Shine a light in the dark
Let me see where you are
'Cause I'm not gonna leave you behind

If I told you that you're not alone
And I show you this is where you belong
Put your hands in the air
One more time..." --
"Unity" by Shinedown

I feel like I've been selling our baby short. Every time someone congratulates me on our pregnancy, I have to somehow negate it with, "Yeah, but, this is my third pregnancy in a year, so we'll see..." I realize I'm saying this for me, not them, but it has been bothering me: I feel like I've been selling our baby short. Again, we encounter the brain's weak attempt to protect me from something that isn't happening. Thank you, brain.

I heard Tsoknyi Rinpoche speak recently (you can listen to his inspiring, funny talk here), and am currently reading his book "Open Heart, Open Mind." One of the most powerful concepts he presents is "real but not true." That is, something can be very real for you, but not actually factually correct. In my case, my fear of losing this pregnancy is very real, and not to be minimized. At the same time, for today, it is not true that I am losing the baby I am carrying. I am very tempted to write "real but not true" on an index card and keep it in my purse. My very real feelings and stories about pregnancy loss are based on my history, my brain's attempt to make sense of it, and my physical body's -- and subtle body's, i.e. energetic field, emotions, etc. -- interpretations of these experiences. For today, which is all any of us has, it is not true that I'm losing this pregnancy. Therefore, it's not fair for me to sell our little one short by qualifying news of our pregnancy with reports of my miscarriages.

I was driving home yesterday from a half-day mindfulness retreat for my Mindfulness-Based Stress Reduction class I'm enrolled in. I normally don't listen to the radio when re-entering the real world after a retreat, but I was so exhausted, I feared falling asleep if I drove home in silence. So, I put on Shinedown's amazing new album, "Amaryllis." Their song "Unity," quoted above, is powerful even if you are not moody and pregnant, and I highly recommend a listen.  However, since I am especially sensitive and emotional right now, it really hit me. Tears started streaming down my face, to the point I considered pulling over. Particularly, the idea that "I'm not gonna leave you behind," and the idea that this baby is NOT alone, and that if God wills it, she or he belongs with David and me -- all concepts related clearly in "Unity." I want to set the intention of encouraging him or her, not prematurely giving up became of my fears based on the past. Grow little one, grow and thrive!

Friday, May 4, 2012

A Heart That's Ready for Anything

"We do this practice to have a heart that's ready for anything." -- Eric Kolvig, to me, about why we cultivate a mindfulness practice

"Darkness has a hunger that's insatiable, and lightness has a call that's hard to hear." -- The Indigo Girls, in "Closer To Fine"

This is my third pregnancy in a year. To our great joy, David and I found out that eight weeks after my D&C for a miscarriage, I am pregnant again. In the past, we only told people whom we'd lean on "if something happened." Both times, something happened. This time, we're trying a different approach: We are embracing that we are just very public people. We don't care if you know we're pregnant, even if things go wrong. In fact, especially if things, God forbid, go wrong. The feedback David and I have  gotten on our blog posts about our miscarriage posts have been overwhelmingly positive; many people said they helped them or helped their friends. We hope that by sharing our experience with this pregnancy, however it turns out, it's helpful. Emboldened by posts such as this one, I want to be upfront this time. I want you to know why I'm overly sensitive, why I'm flaking on commitments (nausea and extreme exhaustion) and that I don't think Sea Bands are fashionable.

I went to a powerful meditation retreat last week, and really connected with teacher Eric Kolvig. I talked with him openly about my grief, and how to apply a mindful and compassionate presence to it. Have you ever had someone say something to you that seemingly went straight through your chest and tattooed itself on your heart? I've had it happen three times; one is too personal to recount here. The second was when my first OA sponsor suggested, "Nothing else you've done to control your food addiction has helped. Why don't you try something different and just trust?" The third was Eric's statement to me that we do our mindfulness practice to have "a heart that's ready for anything." It was clear to me that after a lifetime of feeling blown about by my outside life circumstances, that is my deepest longing: to have a heart that's ready for anything.

If you know me you know that I am anxious by nature, and in fact have a severe anxiety disorder. So, I don't have unrealistic expectations that I'm going to be all Zen about this pregnancy. Every pregnant woman I've asked worries through her pregnancy.  After all, the stakes could not be higher, and we all desperately want to control the uncontrollable. What I am aiming for is to bring a mindful and compassionate awareness to my experiences, and not over-identify with them or become lost in my stories. For example, the other night I was brushing my teeth and thought, "I wonder if I'll have an ectopic pregnancy." I have no signs of an ectopic and no reason to think I'd have one. Instead of beating myself up for the "stupid" thought, I said to myself, "Sarah, brush your teeth. You're pregnant right now." I kindly acknowledged to myself that my brain is looking for ways to predict danger so it can protect itself. It's what brains do, the same way that hearts beat. That doesn't mean I have to buy into every thought my brain comes up with.

Another example of what I'm trying to achieve with this pregnancy is this: yesterday I became gripped with fears that we will lose this baby. Instead of my usual coping mechanisms, like telling myself that the doctors said we have a 70 percent chance of having a live birth eventually, or saying to myself, "don't worry," I took the advice of my teacher Tara Brach. She told me to greet the fear with compassion. So I put my hand on my heart and said, "Of course you're scared. It's ok." I then reconnected with my body and breath. This felt much better than pushing away what is desperately seeking my attention. This process about applying mindfulness to a pregnancy that has some anxiety coming up is what I hope to share on my blog.

So here I sit, full of anticipation about our pregnancy. Hope and optimism that things will go well, but the life experience to know that things might not. Yet, I truly feel like my heart is ready for anything. Bring it.

Tuesday, April 10, 2012

"The Slap" Book Review

The Slap: A NovelThe Slap: A Novel by Christos Tsiolkas

My rating: 4 of 5 stars

I wavered for a long time about whether to give "The Slap" 3 or 4 stars. I ultimately decided on 4 because Tsiolkas did the impossible: kept me reading a book in which I detested nearly all of the characters. I usually wouldn't continue reading such a novel, but I think it's a testament to the writer's craft that not only did I keep reading, this was a library copy and I read it in the bathtub. Risky!

I like the way Tsiolkas unveiled more information as the novel went on. The villains turn out to not be quite as evil, the semi-empathetic characters not as virtuous as one thinks. His pacing and layering made this a fantastic read for me.

But, I have another complaint: in addition to hating these characters, I took issue with what appears to be Tsiolkas' pessimistic, snarky worldview. For example, nearly every character abuses prescription or illegal drugs, or engages in unhealthy sex just to get through life, and I couldn't help but feel this Tsiolkas agreeing that you have to numb out like this just to get through life. I don't subscribe to that worldview.

And speaking of sex, boo to Tsiolkas for crummy sex: there is tons of sex in "The Slap," and none of it is the slightest bit erotic or sexy. In fact, Tsiolkas was nominated -- rightfully so -- for the "Bad Sex in Fiction Award" for this book in 2010. I'd hate to read how bad the sex was in the book that one if "The Slap" lost to it!

All told, this book sparked a very lively discussion in my multi-national book group. The two Australians present told us it was an authentic presentation of life there, especially of the Greek community. Who knew that Oz has the largest Greek population outside of Greece?

View all my reviews

Sunday, April 8, 2012

The Power of Positive Thinking

I am coming up on five years of back-to-back abstinence in OA-HOW, a structured way of working the Overeaters Anonymous (OA) program, a Twelve Step program for people wrestling with any food-related compulsion. In OA, abstinence means "refraining from compulsive overeating" or other compulsive food behavior like anorexia or bulimia. In HOW, we put a lot of emphasis on abstaining from negative thinking, which is really hard for me. I am by nature, negative, and the brain does a lot to try to protect us from future heartache; one of its main ways of doing this is by anticipating the worst to "inoculate" us from bad things happening in the future. Of course, this is erroneous, because we just end up suffering twice: in the anticipation of the bad event, and then, if/when the bad event happens.

Pesach (Passover) has always been a miserable holiday for me. It is hard for any observant Jew: imagine preparing for Christmas and moving at the same time. There is a tremendous amount of work to prepare for the holiday, some of it very labor intensive. Even though my husband David carries most of the heavy lifting, I still do my fair share, and the necessities of the holiday preparation -- cleaning, shopping, cooking, entertaining, and staying up late -- really pushes all of my buttons. It activates my chronic pain in a bad way. All of this means that I usually approach the holiday with a lot of dread and negativity. This makes me miserable, but worse, it also erodes David's enjoyment of the holiday.

I have been getting deeper into my mindfulness practice, and I think I am growing weary of the suffering I cause myself. Pain in life is inevitable, but more and more I am clearly seeing that I am the source of most of my suffering. Stress happens, of course, but the stories I construct about what I am experiencing are truly the cause of my misery. There is a massive difference between pain and suffering. So, in an attempt to cut down on my suffering, I decided to try something different for Pesach this year: abstaining from negative thinking, just like my Twelve Step program advises me to do.

I wasn't sure I could successfully keep a positive attitude, but I was determined to try one day at a time. To my surprise, I was quite successful. To my amazement, it made a tremendous difference to the quality of my holiday. Yes, I am still exhausted. Yes, I am still in pain bad enough that it requires narcotics to manage it, which I hate taking. But I have enjoyed this holiday more than any in the past. I was more productive. David said, "You have gotten more done, with less pain to yourself, than you ever have in the time I've known you." My OA sponsor said, "I can tell how much calmer you are." Even my body bears the fruits of my efforts: this is the first time in a decade I haven't had my telltale Pesach cold sore, which is a stress response.

This has made for an infinitely sweeter holiday. It is is profoundly meaningful for my faith -- it is the story of God rescuing the Jews from brutal slavery in Egypt, ultimately leading to our redemption and giving of the Torah at Mount Sinai. This year, freed from the excessive negativity and crap stories I tell myself, I was able to relax and enjoy the holiday, both for what Hashem (God) did for the Jewish people, but also what Hashem did for me: leading me out of food addiction to a saner, freer existence. I used to dread Pesach because I was so driven by the compulsion to eat, I couldn't stay away from non-kosher food, or chametz, leavened food prohibited on the holiday, for even eight days. It was torture. This was a problem for me since adolescence.

To an outsider, it seems like I do a lot of extreme things for my recovery program: I weigh and measure all my food, yes, even in public, even when it's embarrassing. I make at least four telephone calls per day to other fellows in recovery. I do a daily reading and writing assignment. Most importantly, I work the Twelve Steps, which are simple but never easy. Yes, all of this takes time, and I do not always enjoy it, to say the least! However, when I reflect on my greatest blessings of recovery, it becomes clear why this is so worth it. Yes, losing so much weight is amazing. But living with integrity is priceless. Knowing that I won't have to go binge on non-kosher foods during Pesach, or the other 51 weeks of the year -- and end up hating myself for it -- is the biggest blessing. Recovery has given me integrity: my insides match my outsides. No more outwardly living an Orthodox lifestyle, while binging at Burger King, praying no one sees me (and again, hating myself for my "lack of self control" -- I know now that this was the cunning, baffling, and powerful disease of addiction, as the book "Alcoholic Anonymous" describes it). Living my values, having God redeem me from slavery to food addiction is truly priceless. Is my daily OA work worth it? Hell yes!

Friday, March 23, 2012

Words That Harm, Words That Heal

"Words are, in my not so humble opinion, our most inexhaustible source of magic, capable of both inflicting injury and remedying it." -- Albus Dumbledore to Harry Potter in film "Harry Potter and the Deathly Hallows Part II"

"Too much time on my hands, I got you on my mind
Can't ease this pain, so easily
When you can't find the words to say, it's hard to make it through another day
And it makes me want to cry, and throw my hands up in the sky." -- Iron Maiden, "Wasted Years"

I am so grateful to all the friends, family and acquaintances who are reaching out in many ways to express their sympathy to David and me about the recent loss of our unborn child. Most people say something along the lines of, "I don't even know what to say to you." That is unsurprising, because there is very little to say other than, "I'm sorry," which feels inadequate to most people saying it, even though it isn't to me when I'm hearing it. In fact, I would argue that when you veer much beyond that, you risk stepping over a line. I am obviously very public about this, which opens me up to all kinds of comments from well-meaning people. But I've had to reconcile enough painful "condolences" these last two weeks that I want to write a specific post about some do's and don'ts to comfort women who have miscarried. Obviously, every couple is different and every loss is different, so I'm sure there are people who would not be offended by what offends me, or who might not be comforted by what comforts me. But, I'm pretty reasonable, and I think I can provide a place to start. A friend of mine asked me to pen this.


1. Here be dragons! There is one primary thing to avoid when talking to a couple or woman who has lost her baby: please do not say anything along the lines of, "There was something wrong with the baby. That's why this happened." Nothing is less relevant and more hurtful at this time. Grief is a duty of the heart, and this comment is rational, a response of the mind. Yet, if I had a dollar for every time someone said it to me lately, I could treat a dozen friends to Venti-size expensive coffee drinks. Let me qualify this by saying that most people who dole out the "something was wrong with the baby" line are well-meaning people who are trying to help. Quite a few of them are female friends of mine who have miscarried, and this line of reasoning helped them cope with their pregnancy losses. Yet, it cut me like a knife when I heard it, and was only made worse by the people who embellished it with, "Better this than you have a child with an illness or a special-needs child." This is offensive on so many levels, I can't even go here.

We are decently bright people, and we understand the science quite well; biology was my minor and remains an interest, and I was a health writer. Furthermore, as common as miscarriage is (very), it is actually not well-understood and varies case-by-case. An acquaintance of mine related this "something wrong..." line in the name of her husband, a paramedic. When I whined to a friend of mine -- a very advanced health-care professional with a 23-year career in obstetrics -- about this she gave the deliciously snarky reply: "Wow. I'm so impressed that her husband the paramedic has figured out what the best researchers and physicians in my field continue to study and struggle with." In other words, it's complicated. In fact, a reproductive endocrinologist has since explained to us that there are five main categories of miscarriage, and there being a problem with the baby itself is just one of those five. That leaves four other possibilities.

Even if you have miscarried and even if it comforted you to believe that the pregnancy terminated because of a specific problem, it is enough of a potential bombshell that it's probably best to avoid saying it to someone else.

2. No Medical Advice, Please: Pirkei Avos (Ethics of the Fathers) states, "Who is wise? He who learns from all people" (4:1). However, there are limits to this, and if there is one thing I excel at, it's taking care of my wellbeing. My journey with Lyme Disease and fibromyalgia has ensured that I have to be a fierce advocate for myself; I have spent years learning how to make the health care system work for me and my family, and I don't accept any half-assed medical care. So, I don't want to sound haughty, but my experience is that most people who don't have an M.D., NP, or PA credential after their initials don't have much to teach me about medicine. I get my referrals from top-rate doctors who know my health history and my personality well. I had a cousin recommend I get tested for a clotting disorder that runs in the family, which I really appreciated, and still many others say, "Let me know if you need medical referrals." I appreciate all that, but not much more specific advice unless you have had the same problem that I have and have specific information that could help me. I acknowledge that until now, I have had no experience with reproductive problems, so what I do value is other women's and couples' experiences who have been on this journey. However, if one more person tells me that acupuncture would prevent a miscarriage, I'll hurl on their shoes, I promise.

Seriously, I'm thrilled you're pregnant: Don't be afraid to tell me you're expecting. Just tell me in private if we're close friends. I'm genuinely happy for my friends who are expecting, and perhaps selfishly, I never want to become someone who isn't happy for people who are pregnant. It's just important to me. I think I've done a good job of holding my own disappointments in one hand, and the joy of my friends expecting children in the other.

Etc.: Another thing that has been hard for me to handle are any kinds of statements about my personal faith through the tragedy of a miscarriage. As I mentioned in an earlier post, I bristled at someone's comments to me along those lines. I think it's probably best not to make any presumptions on this topic. The other thing that annoyed me is people who ignored this because of their own awkwardness; it's a big deal to us, and no, we don't expect you to fix it, or even really comfort us. So, with all that said, what does help?

1. Gifting Yourself: The number one helpful thing that other people did for me in the aftermath of the miscarriage was spend time with me. I had friends come over and hang out with me, hold me while I cried, and walk the dog with me. Sometimes all three! These visits lasted from 45 minutes to three hours, and they really helped. Other people checked up on me with frequent phone calls, text messages, e-mails, and Facebook messages. That also made me feel cared about. My religious community kindly cooked meals for our Sabbath, so David and I wouldn't have to worry about feeding ourselves; that was hugely helpful, and made us feel really cared about. Other people sent cards, which also felt good. Again, people just reaching out to say, "I'm so sorry," is really what mattered to us.

When I asked David what most helped him in the immediate aftermath of the miscarriage, he said, "When people asked me things, rather than told me things."

2. Prayer: 'Nuf said.