You Gave Me A Mountain

"This time, Lord, You gave me a mountain, a mountain you know I might never climb. It isn't just a hill any longer -- You gave me a mountain this time."  - "You Gave Me A Mountain," lyrics by Marty Robbins, sung by Elvis Presley

"There is sorrow beyond all grief which leads to joy and fragility, out of whose depths emerges strength." - Rashini

I have had a lot of reproductive disappointments lately. It feels unbearable to write about them, but when I realized I haven't posted anything in almost a month, I knew why: this is what is going on, and I'm not in the mood to talk about it. Yet, this topic feels like a blockage, and until I write about it, I can't write about anything else. This sucks unlike anything else I've ever been through. I don't want to make it sound like I've been on death marches, sex trafficked, or anything else truly horrific, but for a privileged white girl, I have had my share of genuine tragedy and heartbreak, and infertility (IF) exceeds it all. Perhaps it's because IF touches on such deep, personal longing: religiously and culturally, most people have been inculcated with a deep desire to have children. Hell, if you are from a Judeo-Christian background, it's the first frigging commandment. If I were inclined, I could write a separate post about what IF has done to my spirituality and relationship with God. It aint pretty. Add to that the intense biological drive to propagate, and you have a potent mix for being really fucked up if things aren't working in the reproduction department.

When I had my miscarriages, I was shocked at the insensitivity of other infertile women who said, "Well, at least you can get pregnant.  I haven't been able to do that." I still stand by the insensitivity of expressing that comment to someone who has lost three babies, but from where I sit now, I agree. For unknown reasons, I have gone from the camp of the super-fertile to the "...and to think, I wasted all that birth control!" camp. When you can get pregnant, there is still hope that this pregnancy will turn out ok. Now, I understand the frustration of getting yet another period when you don't want one. This is worse.

That leads me to another point: I have had to eat some real humble pie. My IF journey has led me to feelings and behaviors that I thought I was above, and I find myself experiencing many of the things I judged other infertile women for. For example, I used to think it was strange when someone told me she couldn't be at synagogue with all the kids. Now, I totally get it. Not wanting to be around pregnant women? Check! Not wanting to be around babies? Double check! Feeling like a playground or Facebook is an emotional minefield (especially around the anniversary of Roe v. Wade)? Check! I actually hid a new parent's Facebook feed recently because all she posts about is her new baby (kudos and thanks to my other friends who are new parents who do a great job balancing info about parenthood with other things! I love you!) In a strange way, I feel like the Universe is giving me a dose of all the things I used to be judgmental of. I assure you, I'm not anymore. I have also learned that the IF drugs, with the intense bloating they cause, make you look pregnant, so I shouldn't assume anyone is.

Maintaining perspective on this problem of IF is not for the faint of heart. It is easy to let it consume you. One of the common ways to try to balance the pain is to look at what is going right in my life, which, thank God, is a lot! Most importantly, I get to wake up every day next to my best friend and partner, whom I'm still madly in love with. I think marriages like ours are rare. My life is full of blessings! Yet, I have to be careful with this tack, because I also use it as a way to negate my feelings of intense sadness. Yes, life is beautiful, but it still feels for both of us like our family is incomplete. For these reasons, it feels like this method of focusing on the positive isn't an authentic or truly useful way in and of itself for me to work through this problem.

I did have some relief this morning when I did a guided tonglen practice led by my meditation teacher, Tara Brach. This is a powerful practice that helps us connect with the suffering of ourselves and others in a meaningful, compassionate way. I found it very calming to view IF as a wave held in the greater awareness of my life as an ocean. To paraphrase Tara, when you're aware you're the ocean, you're not as afraid of the waves. I also like the tonglen practice because an integral part of it is focusing on the suffering of others, and in doing so, it feels like offering a prayer on their behalf.

Ok. I have been sitting on this post for a week, and can't think of anything else I'm willing to commit to the Internet, so here it is for now.

Elvis Birthday Shabbat

"When I was a child, ladies and gentlemen, I was a dreamer. I read comic books, and I was the hero of the comic book. I saw movies, and I was the hero in the movie. So every dream I ever dreamed, has come true a hundred times... I'd like to say that I learned very early in life that without a song, the day would never end. Without a song, a man ain't got a friend. Without a song, the road would never bend, without a song. So I keep singing a song."  - Elvis Presley accepting the Jaycees' award for being one of the Ten Outstanding Young Men of the Year,  Jan. 16, 1971 (video here)


David and I decided to finally give Elvis Presley his glory and celebrate his birthday. Although he would have been 77 on Jan. 8, we knew we wouldn't get many people here on a weeknight, and decided to throw a traditional Shabbat (Sabbath) dinner in his honor on the Jewish Sabbath. After all, the King had Jewish ancestry on his mother's side, so we knew he'd approve.

I have a genuine love of Elvis after three years of employment at Graceland, and I am always eager to initiate the uninitiated. I planned a traditional Southern meal for the occasion:

"Burning Love" Fried Peanut Butter and Banana Sandwiches
"Fever" chorizo beef sausage

Glady Presley’s Corn Bread

"Love Me Tender" BBQ Chicken

"Too Much" Memphis Coleslaw
"Viva Las Vegas" Lady Luck Black Eyed Peas

"Polk Salad Annie" Collard Greens
 and Kale
"Hound Dog" Baked Hush Puppies

"You're The Devil in Disguise" Pineapple Ice Box Cake (photo and recipe)

David, our sommelier, chose Clos Bel-Air's Montagne-Saint-Emilion wine to accompany our selection of beer and Coca-Cola. I'm not sure what that wine had to do with Elvis, but it is from France, and I'm sure Elvis French kissed!

Thanks to the handiwork of my sister, Lillie, we had awesome looking decorations including Elvis place mats and a kick-ass centerpiece for the table. David strung up Lillie's garlands and festive Elvis Birthday lights. You didn't think we'd leave the throne room undecorated, did you? The rock n' roll gods blessed us, and my mom sent some Elvis-themed gifts, including a Blue Hawaii tray that we used as a challah plate, a little pink Cadillac, and cups and napkins. Seriously, opening that box was better than Christmas, and I'm pretty sure this was the first time in history that someone served challah on a Blue Hawaii-themed item.

The meal was meant to be tasty, celebratory, informative, and, above all, FUN. To that end, we interrupted dinner several times to engage in some Elvis trivia questions ranging from the mundane ("How many movies did Elvis star in?" Answer: 33), to the racy ("Why was Priscilla Presley embarrassed to go to the Walgreens in Memphis?" Answer: because everyone knew why she was buying up all the Polaroid film, according to her book "Elvis & Me").

One of the most enjoyable parts of the evening for me was the Elvis Presley sing-a-long we did. David and I chose five of Elvis' most famous hits spanning his career and printed selected lyrics on a song sheet, which we all sang. What we lacked in talent we made up for in enthusiasm!

I had a huge smile on my face all night. My guests seemed to have a blast and enjoy dinner, and I have no doubt that all of us learned something about The King. Three days after the meal, I'm still getting very warm texts and emails from people who were here. The reason it was so much fun is that our friends got really into it, for which I'm thankful. They patiently listened while I regaled them with tales of working at Graceland, the best job of my life.

We wanted our guests to carry the spirit of the King into their life, so they left with a cute little Elvis magnet as a party favor.

There is little doubt that thanks to the success of this endeavor that Elvis Birthday Shabbat will be an annual event. What remains to be seen is whether it will stay small or morph into a bigger party so we can share the gospel with more acolytes. Long live The King!

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.

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. 

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.

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.

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.