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My Appointment in Philadelphia

            I had a doctor’s visit scheduled for this past week at a hospital in Philadelphia called CHOP, Children’s Hospital of Philadelphia, which is kind of embarrassing. All of the paperwork for my visit included references to “the child” this and “the child” that, and I am, of course, an adult. I worried that somehow they’d missed that detail in my medical history and when I walked into the hospital they’d be horrified that I was so tall. But, I was told that this was the place to go for a possible mitochondrial disorder, so this is where I’d have to go, no matter my age.

            This particular adventure started back in March, when I heard from the geneticist that I had some genetic variations that needed to be looked into, and she gave me referrals to a neuromuscular specialist (to check out a possible LMNA disorder, in the Muscular Dystrophy family), and to CHOP (for a possible Mitochondrial disorder). The appointment with the Neuromuscular specialist was easy to schedule, but the process of getting an appointment at CHOP took at least a month, because they had to collect all of my records from various doctors and hospitals to see if they really wanted to take on my case, and, of course, they needed pre-approval from my insurance. Eventually, they sent me a welcome letter telling me that I’d have two appointments on a Wednesday in July, one at nine in the morning with the lab, and one at ten thirty to see the head of the Mitochondrial medicine department. The idea of going to Philadelphia for a doctor’s appointment, a three hour trip each way, was already overwhelming, but to have to be there at nine in the morning?

“Don’t worry, Mommy. I can wake you up in the middle of the night if necessary.”

Mom said we could go the day before and stay over at a hotel to make things easier, but it sounded so expensive and complicated to me (Do we bring the dogs? Would Cricket actually stay calm in the hotel room while we were at the hospital? Could Cricket survive being boarded, even with her sister for company? Would we drive or take a train?), but Mom was confident that it would all work out; and it was still only April at that point, so the specific plans could wait.

            And then Mom went to the orthopedist and found out that she needed a hip replacement, immediately, and we fell into the whirlwind of pre-op testing and surgery and recovery. Even then, Mom was still convinced that she’d be well enough to make the trip to Philadelphia, so we focused on getting her well and continued to put off planning the trip.

My appointment with the neuromuscular specialist, about forty-five minutes away, came up a few weeks ago, the week after Mom’s post-surgical check up with the orthopedist (which went great!), so Mom wanted to test her strength and come with me. I drove, and held doors, and watched Mom maneuvering her cane like an oar, and Mom listened carefully to the doctor to make sure I didn’t miss anything important. The doctor was very thorough, and thoughtful, and put me through a lot of physical exercises and questions and said, eh, I don’t think you have an LMNA disorder (no muscle-wasting, no falling eyelids, and no to a lot of other things on her list), but she was optimistic about my upcoming trip to CHOP, and said she thought a Mitochondrial disorder could be a better fit for my symptoms.

I was proud of myself for managing the drive and the doctor visit, and for not being too bothered that yet another doctor and diagnosis had fallen through, but Mom was exhausted by the trip, and by the next day she’d realized, very reluctantly, that she wouldn’t be able to come with me to Philadelphia, even if we did the whole thing by train and boarded the dogs for two days. So I would be making the trip alone.

“Why can’t I go on the train with you?”

            I know it shouldn’t be such a big deal for an adult to travel to another state alone, but for me it’s a lot; both because of the inevitable physical exhaustion of the trip and because of the anxiety that floods my brain when I try to manage new situations. So Mom called CHOP for help finding a nearby hotel, and to find out how long my appointments would be so that we could plan the trip home. She made the reservation for me and printed out maps and looked into transportation options for getting from the hotel to the hospital and from the hospital back to the train station. And then we heard from the doctor’s office that, actually, I didn’t have to be at the hospital early, because they wouldn’t know which tests I’d need ahead of time. My only appointment would be at 10:30 AM with the doctor, so we re-planned the trip for a single day, starting at 5:30 in the morning, and cancelled the hotel reservation.

I ordered the Amtrak tickets and studied the schedule for the Long Island Railroad, and wrote up a packing list, and put all of my papers together in one folder. I was still worried that I’d miss something the doctor said, or miss a train, or just get lost wandering through a strange city, but even more than that, I was afraid that nothing would come of this doctor visit, like all the others, and the resulting hopelessness, on top of the exhaustion of the trip, would wipe me out. But I was determined to go anyway.

And then, the Monday afternoon before my Wednesday appointment in Philadelphia, I got a call from the hospital saying that the original doctor had to cancel, but the replacement doctor could do a virtual appointment that same morning. A virtual appointment? As in, I wouldn’t have to go to Philadelphia at all?!

“Yay!”

The woman I spoke to on the phone couldn’t explain why I was suddenly allowed to have a virtual appointment, when they’d told me two or three months earlier that it would be impossible, but I agreed to the change immediately. I couldn’t think it all through at that moment, though, because I had an appointment with the oral surgeon in an hour.

But after I got back from the oral surgeon, with thoughts of general anesthesia and swelling and bruising and 3D printed teeth swirling in my head, I started to worry that maybe CHOP had changed my appointment to a virtual one because they’d decided that I didn’t have a mitochondrial disorder, and therefore there was no point in seeing me in person.

I spent the next day canceling train tickets and looking into possible refunds (nada) and starting to finally feel the relief at not having to get on four, or was it five, or six, different trains in one day. And then I got the email with the link to my virtual doctor visit and did all of the pre-visit check-ins and I finally realized that Mom would be able to be there for my appointment after all, and so would Cricket and Ellie, and a lot of the anxiety that had built up over months finally started to dissipate.

At 9:30 Wednesday morning, I logged on, with Mom and Ellie sitting next to me and Cricket grumbling from her bed on the floor. First, I met the program director, and she was very nice and took some more family history and explained my genetic test results in more detail, saying that I had a rare mutation, as in, no one else in the database had the same mutation on that particular gene (though the database is far from complete). And then she told me about the tests they wanted to do (which I could do at home and send in), and she asked Mom if she’d be willing to get tested as well, to give them a more detailed sense of my genetic background. And then the doctor joined the visit. He did an abbreviated physical through the screen (look left and right, turn your head left and right, show your hands, back and front, and walk to and from the computer), and then he told me that it’s unlikely that I have a mitochondrial disorder, though an LMNA disorder would be an interesting possibility. But do the tests anyway, just in case.

I wasn’t surprised, though Mom and my therapist were both surprised and disappointed, having spent months telling me that this would finally be the breakthrough. For me, it was just one more doctor visit that ended with a ho hum instead of an answer, but at least I got to stay at home, in the air-conditioning, with Mom and the dogs. And it saved Cricket the trouble of having to spend the whole day worrying that I’d been captured by space aliens or enslaved by fire-breathing dragons, or whatever it is she worries about when her people are away. We were also able to celebrate her fifteenth birthday as a family and watch her eat all of her birthday hamburgers until she was well and truly satisfied (don’t worry, Ellie didn’t go hungry either).

Cricket and Ellie are my shining reminders that life can always get better, even when your body isn’t working the way you want it to, or your hair is something of a mess. They know that life will always be full of things that are worth looking forward to. Though not always hamburgers in particular.

“Why not?”

If you haven’t had a chance yet, please check out my Young Adult novel, Yeshiva Girl, on Amazon. And if you feel called to write a review of the book, on Amazon, or anywhere else, I’d be honored.

            Yeshiva Girl is about a Jewish teenager on Long Island, named Isabel, though her father calls her Jezebel. Her father has been accused of inappropriate sexual behavior with one of his students, which he denies, but Izzy implicitly believes it’s true. As a result of his problems, her father sends her to a co-ed Orthodox yeshiva for tenth grade, out of the blue, and Izzy and her mother can’t figure out how to prevent it. At Yeshiva, though, Izzy finds that religious people are much more complicated than she had expected. Some, like her father, may use religion as a place to hide, but others search for and find comfort, and community, and even enlightenment. The question is, what will Izzy find?

Looking for Butterflies

            Sometime in the midst of prepping for Mom’s hip surgery, Duolingo announced that I was in the running for the semifinals, of something. I spend some time every day on Duolingo, practicing my Hebrew and French, learning Spanish or German or Yiddish. I’m sure that part of my language learning adventure has been about wanting to feel smart and impressive, but first and foremost I’m fascinated by what languages can teach us about who we are and how we understand ourselves. I don’t practice each language every day, some days I do a little of a few different languages, some days I do a deep dive into one of the languages, sometimes I just do enough to keep my streak alive for another day.

            But then there was this tournament. It wasn’t hard to get into the semifinals: I just had to do the same number of lessons I usually do every day. And even getting into the finals didn’t take much extra effort. But once I was in the finals I started to feel pressure to spend hours each day earning points, by studying old lessons and learning new ones. By then, Mom was home from the hospital, and struggling. I was basically on call 24/7 to make sure she took the right medications, at the right times, and had enough to drink and food, if she could stand to eat, and I was also taking care of the dogs and the apartment and the laundry and the shopping.

“But we’re so easy!”

            And, at first, the extra time spent on Duolingo was a relief, a chance to think about something other than life and death and pain and all of the ways I was failing my mom, and all of the ways I was failing in life overall. I won eighty points with one lesson – I must be a genius!!! But as the week of the finals went on, and the pressure grew, I was on my cellphone so much that it kept running out of power. I usually don’t notice how much battery is left on my phone, I just put it on its charger when I go to sleep and it takes care of itself, but now it needed to be charged multiple times a day. I was doing Yiddish lessons in between trips to the laundry room, and Spanish lessons while the tea was steeping, and French and German when I had free time and would normally be trying to write, or read. Every time I saw my name fall down to, say, twentieth place, when only the top fifteen would win, I felt like a failure. I had to push harder, do more, and win! I didn’t even know what I might win if I made it into the top fifteen, but it said that the top fifteen would be winners and I wanted to be a winner!

“I’m already a winner.”

            The dogs handled the early days of Mom’s recovery really well, thank God. Ellie was her usual sweet self, sleeping on the floor of Mom’s room, sending good vibes throughout the day and night, and knowing to come to me for food or trips and let Mom rest. Even Cricket did better than I had expected. She (mostly) listened when she was told to stay off Mom’s lap, or away from her feet when she was walking slowly down the hall. There was one bad night, though, when she didn’t listen. I found out in the morning that, using her good leg, Mom had kicked Cricket off the bed, and Cricket flew across the room, losing her tags halfway across the floor (I reattached the tags the next morning, pressing extra hard with the plyers so that at least if she went flying again she’d still have her identification on her).

“Harrumph.”

By the weekend of the Duolingo finals, Mom was starting to feel better, not needing me to be on call as much, and my obsession with my placement in the Duolingo rankings became constant. By midday, Sunday, I was in 16th place, one spot away from the winner’s circle, but the whole thing was becoming tedious and I was starting to hate learning languages, which is not like me at all. The only time I could get any perspective was when my phone ran out of power and I was forced to take a break while it was on its charger. I was still able to walk the dogs, and clean, and cook, and make tea when necessary, so there were a few minutes here and there when I wasn’t on my phone, trying desperately to keep up, but not many.

            By early evening I had made it into thirteenth place and I thought it was safe to take a break to make dinner, and eat dinner, since the competition would be ending at 11 PM. But when I looked at the rankings again, an hour later, I was back down in sixteenth place. I sat with Mom in the living room, supposedly watching TV, but really trying to earn enough points to get back into the winner’s circle. It was about 10:40 PM and I was still about one hundred points from fifteenth place – winner! – when the battery ran out and my phone shut off. I had seen the warnings that I was low on power, twenty percent left, ten percent left, but I was too busy to stop and charge it, and I was sure I had enough to make it through the end of the tournament, and I was wrong.

At 10:40 PM, I knew that even if my phone charged quickly, I’d still be too far behind to make up the points by 11. Each point I earned would be matched, at least, by the guy in fifteenth place, and he would always be at least a hundred points ahead of me. I wasn’t sure if the people ahead of me in the rankings had more free time, more competitive spirit, better strategy, or if they just had Duolingo Plus, the paid version, which makes it much easier to earn a lot of points at once, but I knew I was out.

            So, I finally let go. I put my phone on its charger, and took the dogs out for their last walk of the day, and brushed my teeth, and tried to accept defeat. Some small part of me felt guilty for giving up, telling me I could have switched over to the Duolingo site on my computer and at least tried to earn the last one hundred, two hundred, three hundred points, however unlikely success might be. But I didn’t do that. I just made my overnight oats for breakfast, took my evening meds, and watched the clock as the last few minutes ran out on the Duolingo tournament.

            I was already planning this essay by then – because the extremeness of my behavior around this meaningless tournament worried and intrigued me. I could stand back, finally, and wonder if I was specifically vulnerable to this obsession because of the helplessness of watching Mom struggle to recover from her surgery. Or if maybe there’s something in my brain in general that can’t tell the difference between what’s important and what isn’t important, and I truly believed that winning this tournament could change my life in some significant way.

            Mom had a much better way of distracting herself. For Mother’s Day, before the surgery, when I was searching through Amazon for something Mom might like, I found a butterfly kit. I’d never heard of such a thing, but Mom loved the idea, and then spent half a day looking for the right one (not the one I’d found), and it arrived a few days before the surgery. She set it up in her room, and read diligently through the instructions for how to take care of the caterpillars, and their habitat. Luckily, there wasn’t anything I needed to do for them while Mom was in the hospital, because I was too busy cooking and cleaning and freaking out, to have made sense of more instructions.

            And when Mom came home and was dealing with all of the pain and discomfort of recovery, she watched the caterpillars creating their chrysalises, and she fed them and cared for them, and when the butterflies started to emerge, Mom was starting to feel better, and by the time Mom was ready to start walking outside with the physical therapist, it was time to hang the butterfly habitat outside on a tree, and open the zipper, and let the new butterflies find their way out into the world.

            The metaphor of the whole thing really resonated, for both of us (though Mom was disappointed that the butterflies flew away so quickly after their transformation). The presence of these creatures, transforming in her room, gave her something hopeful to look at every day. Even if she never intended the butterflies to be such a clear metaphor, some unconscious part of her brain knew what she would need and sought it out.

            And, for whatever reason, my mind sought out the Sisyphean task of trying to win a Duolingo tournament I could never win.

            There was such relief when the tournament was finally over, even though I’d ended up right outside of the winner’s circle in sixteenth place. I was able to look away from my phone again and realize that Mom really was feeling better, and moving better, and ready to make her own tea again, the way she actually liked it. And I was finally able to go back to my other obsession: watching endless episodes of Murder, She Wrote, and basking in Jessica Fletcher’s ability to decipher clues and solve murders and believe in herself despite constant criticism. In a way, Jessica Fletcher is the butterfly version of my caterpillar self, and watching her gives me hope that someday I might come out of my chrysalis and really be able to fly.

            At the same time, Cricket started to realize that her Grandma wasn’t in as much danger anymore, and decided to resume her regular habits: including her insistence on sitting on her Grandma’s lap and barking her demands as persistently and loudly as possible. She made it clear, in her own way, that there was more to life than winning a Duolingo tournament, or even watching episodes of Murder, She Wrote, and it would require me to get up and take her and her sister outside to look for the butterflies.

If you haven’t had a chance yet, please check out my Young Adult novel, Yeshiva Girl, on Amazon. And if you feel called to write a review of the book, on Amazon, or anywhere else, I’d be honored.

            Yeshiva Girl is about a Jewish teenager on Long Island, named Isabel, though her father calls her Jezebel. Her father has been accused of inappropriate sexual behavior with one of his students, which he denies, but Izzy implicitly believes it’s true. As a result of his problems, her father sends her to a co-ed Orthodox yeshiva for tenth grade, out of the blue, and Izzy and her mother can’t figure out how to prevent it. At Yeshiva, though, Izzy finds that religious people are much more complicated than she had expected. Some, like her father, may use religion as a place to hide, but others search for and find comfort, and community, and even enlightenment. The question is, what will Izzy find?

Genetic Testing

            About a year ago I had to go to a Gastroenterologist, both because I was experiencing belly pain and nausea (still am) and because my Cardiologist was impatient for me to schedule my first colonoscopy.   The gastro took my concerns seriously and when he saw a note in my chart from a Rheumatologist saying that I have a clinical diagnosis of Ehler’s Danlos (a connective tissue disorder), he referred me to a geneticist to see what type of Ehler’s Danlos I have, because certain types can make a colonoscopy dangerous, and he didn’t want to take any unnecessary risks.

It took a while to get an appointment with the geneticist, and then it took a while for the first set of results to come back, which were inconclusive, and then it took a lot longer for a more comprehensive set of tests to be performed.

“That sounds exhausting.”

            I finally heard from the geneticist in March, and she said that there were a few genetic mutations (see, I AM a mutant!). Most of my genetic test results came back as “variant of uncertain significance,” because they’ve recognized mutations on certain genes (related to Connective Tissue disorders and mitochondrial disorders, in my case) but are not yet sure what those mutations signify. There was also a “likely pathogenic variant” on the LMNA gene, something I’d never heard of and had to google extensively. The geneticist referred me to a neuromuscular specialist to look into a possible LMNA-related disorder, and sent me for more tests see if I might have a mitochondrial disorder, based on the variants of uncertain significance, and it turned out that there was something there, so she also referred me to a hospital that specializes in mitochondrial disorders.

            I am not used to doctors taking me seriously, or even taking my test results seriously, so I haven’t quite taken in the idea that there might be a name for what I have, and doctors who are willing to try and treat it. I’m still worried that this will be another dead end and I’ll be back on the doctor roller coaster by the fall, with no validation and no treatments to show for it.

            The LMNA thing is still mostly a mystery to me (my brother, the doctor, had never heard of it), but the research I’ve read says that pathogenic variants on the LMNA gene can cause diseases like: muscular dystrophies, dilated cardiomyopathy, premature aging disorders, and a bunch of other diseases I’ve never heard of. There could be a connection between the LMNA variant I have and the scoliosis that runs in my family (on my mother’s side). There could also be a connection between some of my muscle weakness and walking problems and heart murmur and all of this, but the research I was able to find was mostly about much more serious disorders related to the LMNA gene variants and didn’t sound, overall, like what I’ve been experiencing all these years.

            My research on mitochondrial disorders came a lot closer to fitting my situation, though, with a list of possible symptoms like: exercise intolerance, muscle weakness, shortness of breath, and severe exhaustion. Type 2 Diabetes can also be a symptom of a mitochondrial disorder, and that runs on my father’s side of the family, and has always been a concern for me.

            Mitochondrial disorders cause cells to have trouble metabolizing proteins, so the body doesn’t get adequate oxygen or energy, and instead produces lactic acid and other organic acids that can be toxic to the body. If I do have this, I have a mild version (compared to children who show signs in infancy), which would explain why it’s been hard to diagnose.

            The hospital that specializes in mitochondrial disorders has already requested a lot of my previous medical records, including MRI’s and spinal tap results. I’m not sure what else they will need in order to determine a diagnosis, but the articles I’ve read have mentioned muscle biopsies as likely next steps, and they may also want me to redo scans, or even, god forbid, redo the spinal tap which sent me to the hospital last time around.

Miss Butterfly held my sock ransom until I came home

It makes sense that mitochondrial disorders are hard to diagnose, because symptoms can range from mild to severe, involve one or more organs, and can occur at any age. Symptoms can include: poor growth; muscle weakness or pain, low muscle tone, and exercise intolerance; vision or hearing problems; learning disabilities or developmental disabilities; autism spectrum disorder; heart, liver or kidney disease; gastrointestinal disorders, swallowing difficulties, diarrhea or constipation, vomiting, cramping or reflux; diabetes; increased risk of infection; neurological problems (seizures, migraines, strokes); movement disorders; thyroid problems; respiratory problems; lactic acidosis; and dementia.

            There’s also no known cure for these disorders, just experimental treatments to help reduce symptoms, including vitamins and supplements like: Coenzyme Q10, B complex vitamins, Alphalipoic acid, L-carnitine, Creatine, L-arginine; and exercise, rest and physical therapy. They also say to avoid alcohol (check), cigarettes (check), extreme temperatures (I try), lack of sleep (hmm), Stress (hmm) and MSG (which could explain why I have developed a bad reaction to the Chinese food I used to love.)

“I’ll eat your Chinese food for you.”

            So it looks like I will be spending the summer being examined again, with who knows what potential results. The geneticist also made sure to give me an appointment for next year, in case none of these diagnoses pan out. She said that the genetics field is discovering new things every day, with more sensitive tests coming soon, and more research on how gene mutations influence different diseases. So I will probably see her once a year until they are able to figure out what’s going on with me and how to treat it.

            Wish me luck!

“Good luck, Mommy!”

If you haven’t had a chance yet, please check out my Young Adult novel, Yeshiva Girl, on Amazon. And if you feel called to write a review of the book, on Amazon, or anywhere else, I’d be honored.

            Yeshiva Girl is about a Jewish teenager on Long Island, named Isabel, though her father calls her Jezebel. Her father has been accused of inappropriate sexual behavior with one of his students, which he denies, but Izzy implicitly believes it’s true. As a result of his problems, her father sends her to a co-ed Orthodox yeshiva for tenth grade, out of the blue, and Izzy and her mother can’t figure out how to prevent it. At Yeshiva, though, Izzy finds that religious people are much more complicated than she had expected. Some, like her father, may use religion as a place to hide, but others search for and find comfort, and community, and even enlightenment. The question is, what will Izzy find?

My Latest Symptom

            The most recent embarrassing symptom of my autoimmune/connective tissue/who-knows-what disorder was a wound on my lip that refused to heal. Actually two. The first one was on the right side of my lower lip and lasted at least three weeks, and as soon as it healed another one opened up on the left side. I can’t even explain the frustration I felt when, after less than a day with actual normal skin, a new wound opened up.

“You looked really weird, Mommy.”

            This would have been fine, though, if every time I was in the view of other human beings I was wearing a face mask, but I teach online once a week, and take a Hebrew class online twice a week, and I was supposed to record another choir video, so it was been an exercise in holding my head at funny angles, rejiggering the lights, and trying not to feel embarrassed when my still bleeding lip, or any of the many different scabbing stages, were visible. Only one of my students mentioned it, and I’m assuming that everyone else was either being polite or not actually paying attention to me (which is more likely).

“Were you saying something?”

            The oral pathologist said the lip wounds were probably caused by a combination of the Lichen Planus (an autoimmune disease that impacts the inside of my mouth and also my lower lip for some reason), and the way the face masks keep moisture in, and the steroid gel I have to use to control the Lichen Planus (which barely works, but successfully thins my skin). He wasn’t concerned, though. He was also unconcerned that there was an ulceration on the side of my tongue, and raw red skin on the inside of each cheek, and gum irritation that will lead to more and more problems in the future (his nurse joked that I should save my money for all of the dental work I will need – Ha ha! So funny!), all of which has made eating a painful experience for quite a while now. But other than that, sure, no big deal.

            The thing is, if I could just be sanguine about my symptoms and accept them as a passing experience, maybe I’d be okay. But instead, I end up feeling like these symptoms are proof that I am a disgusting and unlovable creature. I feel like a throwback to biblical times, when Miriam (the sister of Moses and Aaron) was punished with a skin disease for being a gossip. I’ve been putting off teaching my synagogue school students about Tzara’at – the skin disease Miriam, and others, were supposedly punished with for their “bad speech,” because I really don’t want to risk them thinking this lip thing is going to happen to them too. And, really, I don’t want to risk convincing myself that there’s something to that argument. I mean, if gossip caused skin disease none of us would have any skin left!

“What?!”

            As soon as my lip healed – mostly – I rushed to do my choir recordings before a new wound could open up, and I made it with one day to spare before the deadline (I really did not want to explain why I would need more time). And instead of worrying about my lip, I was able to worry about the glare on my glasses, and the break in my voice when I had to move from the lower notes to the higher notes, and the flyaway hairs escaping from all sides of my ponytail, etc., which was a relief.

            I don’t know what my next weird symptom might be, because it’s generally unpredictable, and I’m not so evolved as a human being that I can be blasé about symptoms that impact how I look. But for now, I’m going to make the most of the feeling of freedom that comes from being able to turn my head from side to side while I’m on screen, and eat salty food without fear of excruciating pain, and knowing that if I fall into the depths of despair in the next few days it will be about something other than how I look on Zoom.

“I think I look pretty good.”

If you haven’t had a chance yet, please check out my Young Adult novel, Yeshiva Girl, on Amazon. And if you feel called to write a review of the book, on Amazon, or anywhere else, I’d be honored.

            Yeshiva Girl is about a Jewish teenager on Long Island, named Isabel, though her father calls her Jezebel. Her father has been accused of inappropriate sexual behavior with one of his students, which he denies, but Izzy implicitly believes it’s true. As a result of his problems, her father sends her to a co-ed Orthodox yeshiva for tenth grade, out of the blue, and Izzy and her mother can’t figure out how to prevent it. At Yeshiva, though, Izzy finds that religious people are much more complicated than she had expected. Some, like her father, may use religion as a place to hide, but others search for and find comfort, and community, and even enlightenment. The question is, what will Izzy find?

A Day of Rest

The defining story of the Jewish people is the story of the Exodus from Egypt. The children of Israel were slaves in Egypt for hundreds of years, and when they finally escaped one of the first things they did (at Mount Sinai) was to proclaim that there would have to be a rest day every week. And, yes, the way the Hebrew Bible is written, it’s God who tells them what the Ten Commandments are, including the commandment to keep the Sabbath day as a day of rest, but even if we believe that it’s coming directly from God and not from the people themselves, the people had a choice, to embrace the new rules or forgo them, and they chose to take them on. Imagine what having a full day of rest every week would have meant to a people who had only known life as slaves? Setting aside a full day of rest meant that, for at least one day each week, their time and their priorities were their own. We think of a day of rest as a logical necessity, because of the body’s need for rest, but that day off also creates more space in our own minds, for our hopes and dreams and plans, instead of just thoughts related to work and getting by.

I like to think of Shabbat as a time to sit and listen carefully to those quiet voices inside of us, the ones we can barely hear during the busy work week, so that we can put ourselves back together and bring our full selves back with us into our daily lives. Shabbat is a chance to heal the wounds of the week, especially the times when we’ve pushed through, despite hunger or exhaustion or pain, and never bothered to apologize to ourselves for the harm done.

“How dare you!”

But even in the United States, where we supposedly have a five day work week, with two days off, many people still work on the weekends, or set that time aside for chores and errands. Maybe they go to a prayer service, or have a family dinner, but they don’t spend a full day (and certainly not two days) napping or reading or taking nature walks; instead, they spend the time ticking things off their to-do lists. I’ve found that most people find the idea of rest, especially for a whole day, uncomfortable. Which means that the ancient Israelites knew what they were up to; they knew that rest is essential to living a full life, and that we would have to be commanded to do it.

“You need to be commanded to nap? Humans are weird.”

But even with my deep appreciation for rest, I still don’t feel like I make enough use of Shabbat each week. Part of the problem is that creating a day of rest takes effort. Shabbat is supposed to be a mini holiday every week – a mini Chanukah or Christmas or Passover – and that means a lot of planning, and cooking, and inviting, and cleaning, and dressing up. It sounds crazy to say that I am too tired for Shabbat; too tired to rest. But I am too tired to create the right circumstances for my soul to rest and recharge, instead of just my body.

            Another block to making the most of Shabbat is that I don’t really feel like I deserve a special day of rest each week, given the amount of rest I need, and take, during the work week. I feel like I should be making up for all of that laziness by doing chores on the weekend.

            And then there’s the biggest block of all: my memories of celebrating Shabbat as a kid. Before my father became more religious, when I was four, five, six, and seven, Shabbat was a good day. My brother and I went to Junior Congregation – an hour of Bible trivia and songs and prayers with the rest of the kids and with one not-so-grown up adult – and then, if we could sneak into the Social Hall after the maintenance guys had set up the tables, we could steal brownies while the adults were busy praying in the big sanctuary. And then I’d go to gymnastics with my best friend, and then me and Mom and my brother would get meatball heroes from the tiny Italian sub shop on the way home. It was pretty great.

“Meatball heroes, yes. Bible trivia? Not so much.”

            But then my father became more religious, starting when I was about eight years old, and instead of meatball heroes and gymnastics, my brother and I went from Junior Congregation in the little sanctuary straight into the big sanctuary with the adults, and then to the Kiddish in the Social Hall, where the adults drank Slivovitz and ate gefilte fish and herring and talked for what seemed like hours. We were able to eat a few more brownies, but it didn’t seem worth the trouble. And when we finally got home, we weren’t allowed to watch TV for the rest of the day, or even get homework done. The boredom was mind numbing, except for the times when we played Trivial Pursuit as a family, which were brutal. At that point in my life, the best part of Shabbat was the end.

            I gave up on celebrating Shabbat entirely in my twenties, going to therapy and writing workshops and shopping trips on Saturdays, because it was easier to think of it as just another day than to wrestle with the fish hooks of the past, the memories that cut so deep into my skin that it’s hard to pull them out without damaging my internal organs. And even after joining our current synagogue, nine years ago, and consistently going to Friday night services each week, I still couldn’t find a comfortable way to bring Shabbat home with me.

            But I want to be able to find some peace each week. I want there to be a day set aside where I can put down my big bag of anxieties and truly rest and recharge. But while I know people who are good at dissociating from their feelings, who can even be specific in which of their feelings and memories to “put on a shelf” and out of their minds, for a time, I can’t do it. My internal shelves are not well constructed, so the nasty things keep falling back into consciousness, often in dreams or nightmares, or just in triggers throughout the day that I can’t control or ignore.

“The shelves are falling! The shelves are falling!”

So I’m left with all of my memories and emotions and internal conflicts, even on Shabbat, and no amount of challah, or grape juice, or matzah ball soup, seems to be able to overcome that. Except, if I look back at the beginning of this essay, the purpose for Shabbat that I came up with wasn’t to be happy and carefree, it was to take the time to put your whole self back together, to take ownership of your time, and your internal life, so that when you go back to your daily working life you can bring your whole self with you. Maybe, on those terms, I’m doing Shabbat pretty well after all. Maybe the real problem is that I expect my version of Shabbat to match what I’ve seen in other people’s homes. Maybe it’s not so much that I’m flawed and broken beyond repair, but that my expectations of myself just don’t fit me. And maybe, my goal for Shabbat each week should be to gradually change my expectations of myself until they match the person I actually am. Maybe if I can do that, some peace will follow.

If you haven’t had a chance yet, please check out my Young Adult novel, Yeshiva Girl, on Amazon. And if you feel called to write a review of the book, on Amazon, or anywhere else, I’d be honored.

            Yeshiva Girl is about a Jewish teenager on Long Island, named Isabel, though her father calls her Jezebel. Her father has been accused of inappropriate sexual behavior with one of his students, which he denies, but Izzy implicitly believes it’s true. As a result of his problems, her father sends her to a co-ed Orthodox yeshiva for tenth grade, out of the blue, and Izzy and her mother can’t figure out how to prevent it. At Yeshiva, though, Izzy finds that religious people are much more complicated than she had expected. Some, like her father, may use religion as a place to hide, but others search for and find comfort, and community, and even enlightenment. The question is, what will Izzy find?         

I Don’t Want To Go To the Doctor

            I got a call on the answering machine (yes, they still exist, as do land lines), cancelling an upcoming appointment with the cardiologist. And I was thrilled! It’s not that I particularly hate my cardiologist, but every time I go to a doctor, whether it’s my primary care doctor, or a rheumatologist, a pulmonologist, an endocrinologist, a cardiologist, etc., they weigh me and then tell me that my real problem is my weight, and proceed to lecture me on how to go on a diet.

“I’m not fat, I’m fluffy.”

            I have been on every diet, and read every diet book, and lost and gained weight multiple times, and now I am working on Intuitive Eating with a Nutritionist and trying to undo all of that damage, but even so, every time I see a doctor they insist that if I just ate less and exercised more it would all be fine – as if my problem is that I’ve never heard of a diet before.

            Or as if my weight is my primary medical issue, which it’s not; the added weight is a symptom of both the psychological trauma of my childhood and the medical disorders I have had to deal with as an adult (and the medications I need to take to manage both). I’ve said this to my doctors over and over and over again, but it doesn’t seem to make a difference.

            When I told my nutritionist about all of this – and about my rage at the doctors, and adults in general, who encouraged my eating disorder when I was a child, and who have continued to push me into disordered eating as an adult, without ever feeling shame or responsibility, let alone bothering to educate themselves about an alternative way to address issues of nutrition and weight in their patients – she said, well then, that should be our next project.

            Huh?

            She said, you need to practice setting boundaries with your doctors around weight, and even try to educate them about the pervasiveness of the Diet Mentality and the endless Mobius strip of weight loss and weight gain that they seem to think of as such a wonderful idea but that has actually been shown to cause more health problems than remaining steadily overweight your whole life.

            But I’ve tried, and they never listen to me, and it’s not fair, and why don’t they have to learn this in school, and why is it my job to teach them and…

            And she agreed with me, and listened to me, and said, we need to work on setting boundaries with your doctors around the subject of weight.

            But, but, but…they never learn, and they keep repeating the same things, and whenever they tell me that I should just stop eating so much I believe them and…

            Oh.

            I had the aha moment at the same time she did: the real problem is that I don’t have confidence in what I already know and have worked so hard to learn, so that when they challenge me, I give in.

“Never give in!”

            I’ve worked so hard this past year to learn how to hold my ground when the “You just need to stop eating,” and “You’re less of a person because you are overweight” messages are said by movie stars, or social influencers, or random people in my life; but when a doctor says it, the ground under my feet still gives way. I sit there feeling small and hopeless and I forget everything I know, and believe everything they tell me – that if I would just stop eating so much I’d never have health problems again.

            Depending on how brittle the doctor is in presenting their message on my weight, it can take me hours, or days, or even weeks to get back to solid ground and remember that, actually, my weight is not the problem. And diets have never been a long lasting solution even to the weight issue, never mind for my health overall.

            So what can I do to fix this? And can it be fixed before my rescheduled appointment with the cardiologist which is coming up way too soon?

            The nutritionist suggested that I remind myself that, on this subject, the doctors don’t know me better than I know myself. She said to tell them – I know you’re going to bring up my weight, but I am working with a nutritionist on Intuitive Eating and I am making progress at my own pace, and, for now, your advice is not helpful on this subject. My weight is the least of my problems, and if we can focus on the physical pain and exhaustion that make life so difficult for me, and the connective tissue and auto-immune disorders that cause the pain and fatigue, and numerous other symptoms, that would be a more productive use of our time together.

            But I’ve said all of that, or at least most of it, to my doctors, and they just talk over me. Though maybe I haven’t said it with confidence. Maybe I’ve said it with my eyes on the floor, afraid of what they would say in response, afraid of their disapproval. Because even when I’ve said “the right things” I’ve only said them once; and when the doctor, inevitably, pooh poohed it, I shut up. Because I freeze in the face of their disapproval. I forget everything I know, and I let them talk down to me and blame me without contradicting them. And, no, it’s not my responsibility to teach them, or change them. But if I could stand up for myself, maybe I wouldn’t be so negatively impacted by each doctor visit.

            But how do I get there? How do I hold onto what I know when I start to feel shaky and small? How do I convince myself that I do know my body better than they do, and that I have done the research and I’m not just believing what I want to believe because it sounds easier?

            The temptation to just cancel appointments, or to go but shut off my brain for the duration, is very deep, because I don’t feel strong enough to stand up for myself effectively.

“Yeah, let’s stay home.”

            I wish I could promise myself that next time will be better, and that I will be different. But I don’t know how to make that happen. I had hoped that writing this essay would give me the confidence to believe that I can stand up for myself, but instead it has made it clear to me how much more work I need to do.

“Oy.”

If you haven’t had a chance yet, please check out my Young Adult novel, Yeshiva Girl, on Amazon. And if you feel called to write a review of the book, on Amazon, or anywhere else, I’d be honored.

            Yeshiva Girl is about a Jewish teenager on Long Island, named Isabel, though her father calls her Jezebel. Her father has been accused of inappropriate sexual behavior with one of his students, which he denies, but Izzy implicitly believes it’s true. As a result of his problems, her father sends her to a co-ed Orthodox yeshiva for tenth grade, out of the blue, and Izzy and her mother can’t figure out how to prevent it. At Yeshiva, though, Izzy finds that religious people are much more complicated than she had expected. Some, like her father, may use religion as a place to hide, but others search for and find comfort, and community, and even enlightenment. The question is, what will Izzy find?   

                        

           

           

           

           

           

           

          

         

           

           

           

           

           

           

           

           

           

Cricket Had To Get Her Teeth Cleaned

            Cricket had to get her teeth cleaned, and I was scared. The doctor first mentioned to us that Cricket’s teeth needed cleaning around two years ago, I think. It’s possible he’d mentioned it earlier, but if so, I blocked it out. We were able to put it off at that point, because Cricket was dealing with other health issues that were more pressing, but since she’s been doing better the doctor’s insistence has been growing. Both Mom and I have been concerned about putting Cricket through such a procedure, because of her age and because we’ve heard so many horror stories about dogs dying from regular teeth cleanings, because of the anesthesia. The doctor has tried to reassure us, and at Cricket’s most recent checkup he gave her a battery of tests to make sure she would be safe undergoing anesthesia, and the doctor said that he was confident Cricket would be fine. I wanted to be as confident as he was, and I wasn’t, but Mom and I decided to go through with the procedure anyway, because Cricket’s quality of life was in the balance. The pain in her mouth, especially when she was eating, and the bacteria running through her system, weren’t doing her any good. But I was still scared.

            Cricket is fourteen and a half years old, and as of her latest checkup she was three pounds lighter than the fourteen pounds she’s weighed for most of her life; also, her eyes are a bit blue from cataracts, she’s on medication for incontinence, she seems to hear things that aren’t there, her hair is thinning, and, of course, she has bad teeth. When we first adopted her, I saw a chart that said that a Cockapoo her size would live around 20 years, but given the way she’s been aging lately, I’ve had to recalibrate my expectations. But even so, I’m nowhere near ready to lose her.

“I am a puppy. I don’t know what you’re talking about.”

            Cricket is a difficult dog, she demands what she wants in life and never tolerates no for an answer. She is prickly and feisty and temperamental and adorable, and she has only recently discovered the joys of play (with a Golden Doodle puppy named Kevin who lives in our complex). And no matter how often she gets on my nerves, I can’t imagine my life without her.

            But I trust her doctor, and he was getting more and more insistent that a teeth cleaning was necessary for her overall health, and I could see his point.

Ellie was still skeptical.

            I didn’t want to think about the small chance that she wouldn’t come back from the doctor’s office, but that was all I could think about. Cricket has never been a good patient. She resents both the illness and the treatment, and she absolutely blames me for whatever awfulness she’s feeling. I couldn’t even check her teeth myself, to see if the doctor was exaggerating about how bad it was in there, because she’d bite my fingers off. I wish I were exaggerating, but she recently bit me, hard enough to break through the skin on my thumb, just because I dared to try and wipe the goop from under her eye.

            We made an appointment for the dental procedure for during the winter break and I crossed my fingers – or braided them like a challah – in the hopes that Cricket would come back from the vet, and come back in better shape than she’d been in for a while, ready to chew and bark and play for all she was worth. That was the result I wanted, and I did my best to follow Cricket’s lead and refuse to accept no for an answer.

“No is my favorite word, but only when I say it.”

            The night before the procedure we had to put the food and water bowls away at nine pm, but Cricket barely noticed. Ellie on the other hand found the whole thing upsetting. And so did I. I had nightmares that whole night, and when it was time to leave in the morning, Ellie and I were wrecks, but Cricket was still fine. She was thrilled when Mom took her out to the car (so that I could put the food and water bowls out for Ellie), but Ellie was freaking out. Instead of eating or drinking, she stood by the door and cried as I left to catch up with Mom and Cricket.

I wasn’t freaking out, Mommy. I was just expressing my opinion.”

            Cricket was her usual anxious self in the car, shivering behind my neck, because she knew she was either going to the vet or the groomer and both are horrifying. And, of course, I had a hard time handing her off to the vet tech once we arrived, especially after signing the card that said I knew she would be undergoing anesthesia and recognized the risks. I watched the vet tech carry Cricket inside (the vet still doesn’t let people in the building, only pets, because of Covid) and tried not to panic.

“What are we doing at the vet?”

            By the time we got home, Ellie had pooped up a storm in the quilting area, and even after three treats and a lot of cuddles she still couldn’t settle down, shivering and breathing heavily in my lap. We both tried to take a nap, but the anxiety made it difficult.

            The call came around Noon that Cricket was “Great” and that we could pick her up between three and five pm. I watched TV and did jigsaw puzzles and tried to believe that Cricket was fine, but I had convinced myself so thoroughly that her life was at risk that I really couldn’t take in the idea that she was okay.

We got to the vet at 2:45 pm, but the vet tech understood. The vet came out to give us the bill (oy), and told us that they’d had to remove 7 rotten teeth, and that Cricket would need to take antibiotics and painkillers for a few days. And then there was Cricket, trying to jump out of the vet tech’s arms to get into the car. We thanked the vet and the vet tech and Cricket climbed all over me and her grandma, ready to get the hell out of there. She may have been a little high from her painkillers, but she was herself, and kept climbing all over me, and around my neck, and back down to my lap through the whole drive, until her leash was wrapped tight around my neck, twice.

            I’m sure it was unintentional. Or, I hope it was.

            When we got home, Ellie had to check Cricket out and sniff her everywhere, while Cricket kept pushing her sister out of the way so she could get to the water bowl (though she was only allowed a few sips of water at a time). And then Cricket spent the rest of the afternoon barking and complaining, as usual, because she wanted more water, and she wanted treats, and she wanted…everything.

            After all of the anxiety, and really expecting to get bad news from the vet, the idea that my fourteen and a half year old dog came through anesthesia with flying colors, and almost no after effects, feels like a miracle. And now she seems to be eating more and even starting to gain some of the weight back, and giving me hope that the original chart that said she would live to age twenty, might not have been so far off after all.

            I really needed a miracle right about now, to keep me going. Leave it to curmudgeonly Cricket to make it happen.

“I’m looking cute.”

If you haven’t had a chance yet, please check out my Young Adult novel, Yeshiva Girl, on Amazon. And if you feel called to write a review of the book, on Amazon, or anywhere else, I’d be honored.

            Yeshiva Girl is about a Jewish teenager on Long Island, named Isabel, though her father calls her Jezebel. Her father has been accused of inappropriate sexual behavior with one of his students, which he denies, but Izzy implicitly believes it’s true. As a result of his problems, her father sends her to a co-ed Orthodox yeshiva for tenth grade, out of the blue, and Izzy and her mother can’t figure out how to prevent it. At Yeshiva, though, Izzy finds that religious people are much more complicated than she had expected. Some, like her father, may use religion as a place to hide, but others search for and find comfort, and community, and even enlightenment. The question is, what will Izzy find?

Cricket Can Play!

            Cricket has changed a lot since she started taking the DES (Diethylstilbestrol – a non-steroidal estrogen medication) last winter. First of all, the incontinence problem disappeared, which was the point of the medication in the first place. She takes her pill – buried in hamburger – every other night, and she hasn’t had an accident in months. But there are other changes too. For some reason, her voice is higher pitched than before. She’s always been loud and barky and anxious about strangers, but now when she screams at them her voice gets even higher. She’s also clingier, if that’s possible. She used to make do with sleeping next to her Grandma, attached like a barnacle, but now she tries to sleep on top of her, like a cat (she’s fourteen pounds, at most, so no bones have been broken in the process). She’s been very attached to Grandma since she was a puppy, but it’s a little more intense now. She even sits on Grandma’s lap at the computer now, instead of just on the couch, where it’s easy.

Cricket, the barnacle.

            The big change, though, came up recently, when a new mini Golden Doodle puppy arrived at our co-op. Well, he arrived a few months ago as a little red ball of fluff, but he had to wait until he had all of his shots and did his potty training before he could meet everyone.

This is not Kevin, or my picture. But Kevin is this cute.

            Then Mom came in one morning a few weeks ago, after taking the girls for their first walk of the day, and she said in wonder – Cricket was playing!

            Cricket is fourteen years old and she has never played with another dog. Dogs have tried to play with her, doing their play bows and zooming around her, but she would just stand still and wait for it to be over, or hide behind one of her people, or just raise an eyebrow in disdain at the strange creature and walk away to sniff someone else’s pee.

“Harrumph.”

            Butterfly and Ellie had both tried to play with Cricket over the years, and learned quickly that she couldn’t be bothered. And when we had other dogs over to visit, or she met dogs at the dog park or in the yard, she’d just sniff and be sniffed and then look off in the distance, bored, or confused about why the dog was still there, staring at her.

This is as close as Butterfly (top) and Cricket (bottom) came to playing.

            The closest she came to playing was with her friend Teddy – a black miniature poodle she’d known since puppyhood – but they tended to play consecutively rather than together. Teddy would throw his toy in the air and zoom around the room and scratch his back on the floor, and then he’d go lie down and watch while Cricket did her own play routine.

Teddy and Cricket, tandem napping.

            But with Kevin, the five month old mini-Golden Doodle, Cricket actually went into her own version of a play bow and hopped around with him. No one watching her could believe she was fourteen years old. Ellie, meanwhile, who’d had more than enough of boy dogs when she was a breeding mama, stayed back and waited for it to be over. She allowed Kevin to sniff her a little bit, but she really really wasn’t interested.

“Ugh. Boys.”

            Kevin is a very social dog, and especially social with other dogs. He’ll tolerate a scratch on the head from a human, but he’s really dog-centric. His humans say that they struggle to train him with treats because he’s not food-motivated, but he’ll do anything for a trip outside. I’m sure Kevin’s playful personality plays a role in how Cricket is reacting to him, but I’m pretty sure the DES has changed something for her.

            The thing is, Cricket had her spaying surgery when she was six months old, so she never had the surge of hormones rushing through her body. Now, the advice would be to wait until a dog is a little older before spaying or neutering, because it’s healthier for the dog to go through a few hormone cycles, but that wasn’t the advice when Cricket was little. So when she started taking the synthetic estrogen (DES) to solve the incontinence problem, that was her body’s first real experience with Estrogen, and one of the side effects, it seems, is that she’s learned how to play.

            Cricket has had a full life with her people, and she’s had rich, complicated relationships with her sisters (Butterfly and Ellie), and she’s eaten all kinds of interesting foods and barked in all kinds of different places and sniffed a million different smells, and she chased sticks, and ran like the wind, and rolled in the mud, but I always felt bad that playing with other dogs wasn’t in the cards for her.

            I had some theories: about her being the runt of her litter and therefore under attack from her brothers from day one and therefore not trusting of other dogs; or about her being the runt of her litter and therefore suffering from an unfinished nervous system that caused lifelong neurological issues that made her too hypervigilant and suspicious to play.

            And now she’s fourteen, and she’s discovering how to play. She still has a lot of energy and, despite a number of signs of aging, she’s still young at heart, and my hope is that she’ll have plenty of years left to figure out what else these synthetic hormones can do for her and take them out for a spin.

Cricket practicing her play bow with the grooming brush.

            Every once in a while I notice those signs that she’s aging – the thinning of her hair, the age spots and cauliflower-like growths on her skin, her skinniness despite eating plenty, the missing teeth in her smile – and I feel this void readying to open up, this reminder that Cricket won’t always be here. And then she barks at a leaf and hops across the lawn like a rabbit and then, out of nowhere she learns how to play (!!!!), and, for a few moments, she’s a puppy again, or better, she’s ageless and she seems like she will live forever.

            These are my favorite moments.

Cricket is ready for more!

If you haven’t had a chance yet, please check out my Young Adult novel, Yeshiva Girl, on Amazon. And if you feel called to write a review of the book, on Amazon, or anywhere else, I’d be honored.

            Yeshiva Girl is about a Jewish teenager on Long Island, named Isabel, though her father calls her Jezebel. Her father has been accused of inappropriate sexual behavior with one of his students, which he denies, but Izzy implicitly believes it’s true. As a result of his problems, her father sends her to a co-ed Orthodox yeshiva for tenth grade, out of the blue, and Izzy and her mother can’t figure out how to prevent it. At Yeshiva, though, Izzy finds that religious people are much more complicated than she had expected. Some, like her father, may use religion as a place to hide, but others search for and find comfort, and community, and even enlightenment. The question is, what will Izzy find?

Ellie’s Grey Eye

            For a few days in a row, Ellie’s left eye was a little bit red and she occasionally seemed reluctant to open it, but she’d had similar symptoms before and they usually cleared up on their own, so I wasn’t worried. The vet had given us an ointment way back when, but when we ran out we didn’t bother to get it refilled. When I saw the redness in Ellie’s eye I had it in the back of my mind to call the vet and ask if she should come in, or if we could just refill the old prescription, but it didn’t feel like an emergency.

“Really?”

            And then, at around ten thirty one night, Ellie looked up at me (to tell me that it was time to go out for the final walk of the day) and her left eye, almost all of it, was grey. It looked like a particularly opaque cataract, except that her eye had been clear just a little while before. I started to panic. My baby was going blind! She had multi-system organ failure that was showing up first in her eye! The emergency vet clinic would cost thousands of dollars I did not have, but how could I not rush her out to the car right away!

            I was freaking out.

“EEEEEK!”

            Mom went to the computer to google the symptoms while I watched Ellie dance around on her toes to let me know that she really, really, really wanted to go outside. There were a bunch of possibilities, like a sudden cataract or irritation, Mom said, so let’s wash her eye with warm salt water and see of that helps. We took the girls out for their walk, because they were now barking up a storm, but I was still freaking out. When we got back inside I made the salt water mixture and held Ellie in the bathroom sink and poured the water over her eye, over and over again, to her great frustration. I was hoping the greyness would just disappear with the water, but no such luck. At least the salt water didn’t seem to be hurting her (though she was very annoyed at getting wet and required serious treats as a reward).

            I went to sleep that night worried that I was condemning my baby to death, or at least blindness, by not rushing her to the emergency vet, but Mom said we would go to Ellie’s own doctor the next day and he would know what to do. I was not convinced. I had nightmares about stray dogs coming to my house for help with serious medical problems and I couldn’t help them. The guilt was endless and I woke up feeling like the most awful, selfish, hopeless, incapable person to ever live. And then Ellie came running into my room with a smile on her face and almost no greyness left in her eye.

            Oh Lord.

            We made the appointment with the vet anyway, and did everything we could do to distract Cricket while shuttling Ellie out of the apartment. Ellie cried in the car, but she always does that. She sits in the back seat and makes very high pitched conversation with us, to make sure we don’t forget she’s back there (when her sister is in the car with her, Cricket will climb behind my neck, in the passenger seat, to deal with her anxiety and leave Ellie in the back on her own anyway).

“Hey! Don’t forget about me!”

            By the time we’d reached the vet’s office, and the vet tech came out to get Ellie, I actually had to point out which eye was bothering her, because it was hard to see even the redness now. And then we had to sit in the car and wait. I hate this. Going to the vet is always anxiety producing (for me almost as much as for my dogs), but at least I can be there with them to give them comfort and ask questions and remind the doctor of whatever I think he needs to know. With Covid, I just have to sit in the car and wait while they steal my baby away from me.

            Eventually, the doctor came out and told me that Ellie had had a thorn in her eye (!) and he’d removed it, but there was an ulceration at the wound site and she would need eye drops twice a day, and she’d have to come back in a week to have her eye examined again to make sure it was healing. The vet has something of a hang dog face to begin with, but he looked even sadder this time, clearly upset for what my baby girl had been through; which sort of helped, but also sort of made me worry more.

            Then the vet tech brought Ellie back out to the car and, other than the yellow stain on the hair around her eye from the examination, Ellie looked fine. She was eager to get onto her own feet and get the hell out of there, and she had a lot to say about her adventure on the drive home.

            As soon as we got home, Ellie and Cricket had a tête à tête about the vet visit (mostly Ellie reassuring Cricket that she really didn’t miss anything good), and Cricket seemed to be reassured. They both got a treat for their different traumas and then bedded down for their afternoon naps.

            My first attempt at giving Ellie her eye drops that night was not especially successful (she kept closing her eye so that the drop just rolled down her face, but I eventually figured out how to tilt her head back far enough to get the drop into her actual eye). Once she got the hang of the eye drop routine, though, she got so excited about the treat-to-come that she started to dance around before I could get the drop into her. By the end of the week I just accepted that I would never be good at this, and if it took three drops before one got into her actual eye, so be it.

            We never figured out how Ellie had gotten a thorn in her eye, but given her propensity for rolling around on the floor, bed, and ground whenever and wherever she can, it’s not a big mystery. Days after her visit to the vet she managed to get what I hope was just poop on her back (we have dead mice out there in the yard, and who knows what else I don’t what to know about), and she had to have a full bath to wash it all off, and of course treats to make it better, which meant that along with the twice daily eye drop treats she and her sister had pretty much hit the jackpot.

            We went back to the vet after a week of eye drops and he stained her eye again and there was no sign of the ulceration. I was pretty sure there wouldn’t be, because of how healthy and wide open and brown her eye looked, but we had to check and make sure.

            So now we’re back to the usual problems – with Cricket intimidating Ellie away from Grandma, and off the couch, and away from the leftovers meant for both of them. Not that any of that went away while Ellie was suffering; Cricket doesn’t believe in having mercy on an injured opponent. She takes any advantage she can get.

“Who me?”

            G’mar Chatima Tova! To another year of silliness and treats and good health for everyone!

P.S. Ellie begs for treats even while she’s sleeping

If you haven’t had a chance yet, please check out my Young Adult novel, Yeshiva Girl, on Amazon. And if you feel called to write a review of the book, on Amazon, or anywhere else, I’d be honored.

            Yeshiva Girl is about a Jewish teenager on Long Island, named Isabel, though her father calls her Jezebel. Her father has been accused of inappropriate sexual behavior with one of his students, which he denies, but Izzy implicitly believes it’s true. As a result of his problems, her father sends her to a co-ed Orthodox yeshiva for tenth grade, out of the blue, and Izzy and her mother can’t figure out how to prevent it. At Yeshiva, though, Izzy finds that religious people are much more complicated than she had expected. Some, like her father, may use religion as a place to hide, but others search for and find comfort, and community, and even enlightenment. The question is, what will Izzy find?

It’s Hard to Respect a Body You Can’t Trust

            I’ve been having stomach pains since mid-March, so when I went for my yearly check up with the cardiologist I told him about the pain and he sent me to the gastroenterologist in his practice. I haven’t been to a gastro since I was a teenager, on purpose, so the referral was not a happy thing for me, especially when the cardiologist casually told me it was also time for a colonoscopy.

“Never. Absolutely never.”

            The new doctor was nice, though. And he actually listened to me, and read through my records, and even recommended a geneticist to figure out what type of Ehlers Danlos I have (in case it means that my tissues are too fragile for a colonoscopy, which would be a pretty cool escape). But he also sent me for a few ultrasounds, and even though I knew I should be happy that he was looking for answers, I was dreading the scans, especially the more invasive one. I want to feel better, magically, not go for more humiliating tests.

“What does invasive mean?”

            When I told my therapist about the latest medical drama, and my concurrent struggles with Intuitive Eating and trying to learn how to respect my body, she said, it must be hard to respect a body you can’t trust.

            I’d never quite thought about my lack of trust in my body as coming from my health issues; I’ve thought of it more in terms of the childhood sexual abuse I experienced, and feeling like my body was always in danger and not a safe place to live. But my therapist was right: the way my symptoms come up intermittently, and don’t show up on traditional tests, has made it hard for me to develop a feeling of trust in my body as an adult.

            But maybe the more apt question is: How can I respect a body that my doctors don’t trust? How can I ignore their doubts about my symptoms when they are the only path available for seeking help? The way doctors tend to focus on blood tests and scans, and ignore basic details of how the person is or is not functioning, is frustrating. They are supposed to be empiricists, and yet they ignore so much of the information that’s right in front of them.

            I went for the invasive scans, despite my reluctance, telling myself that even if I don’t trust my body I still need to do whatever I can to heal it. And hours later I was able to check my virtual medical chart and see the results: mostly normal, but with areas obscured. It was already late on a Friday when I got the test results, so I couldn’t call the doctor’s office for more information, or to find out what to do next.

            By the following Monday afternoon I still hadn’t heard from my doctor, but I put off calling, not wanting to be a burden, and not really wanting to hear what he might say. When I finally called, after a few more days of dragging my feet, his secretary said that she hadn’t received the results of the tests, and that’s why I hadn’t heard from the doctor; he would definitely have called by now if he’d received the results, she said. That was something of a relief. And she told me that she was going to reach out to the testing location to get the results and then call me right back. Except, I didn’t hear from her that day, or the next day, or the next. I probably should have called again right away, but I didn’t want to. I resented all of the work that had to go into getting only mildly useful healthcare.

            I was finally able to speak to the doctor about two weeks after the ultra sounds had been done, after calling the office again and speaking to the secretary again, and the doctor told me that he wanted me to go for a Catscan this time, with contrast, in order to see whatever had been obscured on the ultrasounds.

            I reluctantly made the appointment for the Catscan, and I also heard back from the geneticist’s office (for the Ehlers Danlos diagnosis) with a three page history questionnaire to fill out before my visit.

            In the meantime, my nutritionist suggested trying a low FODMAP elimination diet, to see if that could reduce my belly pain. FODMAP stands for Fermentable Oligosaccharides, Disaccharides, Monosaccharides And Polyols, which are short-chain carbohydrates (sugars) that the small intestine absorbs poorly. She gave me a crazy list of foods to avoid for the next two to six weeks – like cashews and pistachios (but not walnuts or pecans) and mushrooms (but not oyster mushrooms) and cauliflower (but not broccoli). I could have tomatoes, but not prepared tomato sauce (because of the onions and garlic that are usually added), and I could have chickpeas and lentils and potatoes, but not kidney beans or barley or wheat. It’s totally non-intuitive; I could eat handfuls of table sugar on this diet, but not an apple.

“Sounds good!”

            I emptied most of the High FODMAP foods from the pantry and put them in boxes (like we do on Passover when, for religious reasons, we are supposed to avoid eating leavened foods), and I adapted our regular recipes to the best of my ability. But my mind was spinning.

            The low FODMAP diet was originally designed for people with Irritable Bowel Syndrome (IBS) and/or Small Intestine Bacterial Overgrowth (SIBO), with the goal of figuring out which foods on the list, if any, are problematic for each individual sufferer. I didn’t have the right list of symptoms for either of those diagnoses, but I was desperate to feel better, so I agreed to go on the diet anyway.

            And there was a lot of relief in being on a diet again; any diet, for any reason. It gave me the feeling that I was at least doing something to help myself, and that someone was watching over my shoulder to make sure I was doing it right. But the diet was hard, and even harder for Mom who had to go along with it for no good reason of her own, expect to support me; though she made a lot of “secret” trips to the Italian restaurant around the corner to make it bearable.

“Wait. What?!”

            After three and a half weeks on the diet, though, my belly pain was worse, if anything. And the limited number of foods I could eat was bringing up my old food panic issues, and leading me to eat more of the allowed foods (like low-lactose cheeses and gluten free cookies).

            My nutritionist had told me that people often lose weight on this diet – even though that’s not the purpose – but I’d actually gained weight. And it wasn’t over, because I still had to slowly reintroduce the high FODMAP foods, in case I had a reaction to any of them. Knowing that there would most likely be no relief going forward, despite the length of time it would take to carefully reintroduce each food, made me angry; but I’m such a good girl that I did it anyway.

            Oh, and I met with the geneticist. She will be sending me a saliva testing kit so we can see if I actually have a connective tissue disorder (I was diagnosed with Ehlers Danlos on clinical examination in the past), but she said that the tests only catch about forty percent of cases, so, even if the test comes back negative, the chances are 60% likely to be wrong.

            And the Catscan came back normal. So I’m at a loss. I was hoping that this summer of medical tests and diets and time off from teaching would re-energize me and allow me to start the new school year with more energy – but I’m still sick and tired, and we’re going back to masks and social distancing and possibly hybrid classes again in September.

I’m angry.

I’m angry that nothing has worked, and that my pain doesn’t qualify as significant because it’s not caused by the right things. I’m angry that I can’t lose weight, and that I can’t stop blaming myself for it. I wanted to make progress with Intuitive Eating and respecting my body, and I wanted to have more energy to live my life the way I want to live it, and it’s just not happening.

Next up. The nutritionist and I are planning an anti-inflammatory diet, to see if, one, nutrition can actually reduce the inflammation in my body, and two, if reducing overall inflammation will reduce my pain and give me more energy. I’m not especially hopeful, but I have to keep trying.

The Jewish New Year (Rosh Hashanah) is coming up fast, and this is a time to make an accounting of the mistakes of the past year and start on a new path, so I’m not giving up yet. But I’m pissed off. Really, really pissed off.

“Grr.”

If you haven’t had a chance yet, please check out my Young Adult novel, Yeshiva Girl, on Amazon. And if you feel called to write a review of the book, on Amazon, or anywhere else, I’d be honored.

            Yeshiva Girl is about a Jewish teenager on Long Island, named Isabel, though her father calls her Jezebel. Her father has been accused of inappropriate sexual behavior with one of his students, which he denies, but Izzy implicitly believes it’s true. As a result of his problems, her father sends her to a co-ed Orthodox yeshiva for tenth grade, out of the blue, and Izzy and her mother can’t figure out how to prevent it. At Yeshiva, though, Izzy finds that religious people are much more complicated than she had expected. Some, like her father, may use religion as a place to hide, but others search for and find comfort, and community, and even enlightenment. The question is, what will Izzy find?