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

Posted on September 4, 2021 by rachelmankowitz

            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?         

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Self-Storage

Posted on September 26, 2020 by rachelmankowitz

            I’ve been fascinated by the term “Self-Storage” for a long time. I would see the signs on the side of the highway as we drove to visit my brother’s family, and I’d wonder, why not just call it “storage?” “Self-storage” sounds so ominous, as if you are being asked to store your soul in a box.

“Huh?”

So, of course, I’ve been trying for years to plan out a science fiction story about a society where it’s possible to store your “self,” or parts of yourself, for varying periods of time. Maybe if you wanted to do a task that was disgusting to you, or that seemed immoral, you could store the moral part of yourself temporarily. Or if you were grieving and the pain was preventing you from moving forward with your life, you could store your emotional self for a few years, until you could get your life back on track.

            I picture self-storage as something that would be available mostly to people with money. For a smaller fee, maybe, you could remove single strands of thought, like the strands of memory Dumbledore kept in vials and revisited in his pensieve in the Harry Potter books. But those single thoughts would degrade more quickly and be lost more easily.

            And then there would be the danger of putting too much of yourself in storage at one time, and becoming someone so completely different that you couldn’t figure out how to return to yourself, or wouldn’t want to.

            And what would happen if you couldn’t pay your storage fees? Would your parts be sold to the highest bidder? Or destroyed?

“Don’t try it.”

            I think people might want to use self-storage to get through something grueling, like medical school or a prison term. Or after experiencing a traumatic event, like rape, or a natural disaster, like a flood or a bad presidency.

“Hmm.”

            Some self-storage places might offer therapy for the reintegration process, but of course that would only be affordable for the premium customers, and there would be a range of prices and qualities of storage available, depending on how much money you could spend. Maybe the cheaper places would use less effective drugs for the processes of removal and reinsertion of the self, or harsher chemicals for the storage of the self, which would make the self degrade more quickly. Some places would have expert self-removers who could do it safely and cleanly and without excess pain, and others would just use a rusty nail, or the equivalent, and leave you to manage the pain on your own.

“A rusty nail?!!!”

            The dangers would be many, of course, and you’d have to buy self-removal insurance, in case the technology went wrong or a clerical worker lost your “self” or confused it with someone else’s. There could also be side effects, though I don’t know what they would be.

“That doesn’t sound good.”

            The self-storage story would, of course, be an allegory for the damage we do to our personalities when we try to deny our memories, or our feelings, and do things that we don’t really want to do. Whether we use alcohol or drugs, or dissociation, or workaholism, or denial, or all of these things at once, our often well-meant attempts to separate ourselves from pain have unwanted side effects that can become life altering. But we are still, endlessly, drawn to these behaviors, because without them our pain often makes life unlivable.

            I think of the self-storage idea around the Holocaust, both because of the human experimentation the Nazis did on their victims, and because of the ways regular Germans, and so many others, were able to ignore the horror of the concentration camps, and all of the events that led up to the final solution, because they were told to think of Jews, gay people, Gypsies, and the disabled as not truly human. I also think about how the Holocaust survivors had to make it through life after the camps, forced to compartmentalize in order to function in the “normal” world. So many people had to squash their memories, of the horror, and of their lives before the horror, just to survive.

            I think of Butterfly, my rescue dog who survived eight years as a puppy mill mama and lived with the resulting medical and psychological wounds for her 4 ¾ years with us until she died. She blossomed and found joy and learned how to live as a real dog, but some parts of her were forever in hiding, unable to heal.

My Butterfly

Humans have a hard time accepting the reality of wounds that deep, and are forever looking for ways to remove the memories, and deny the pain, and to pretend life is universally good. But that need for easy answers takes a toll on us, and on society at large. If you put yourself, or your soul, in storage for too long, can you ever get it back?

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?

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The Onset of Air Conditioner Season

Posted on June 8, 2019 by rachelmankowitz

 

The onset of air conditioner season, and allergy season, seemed to merge this year, at least, here on Long Island. I’m used to sneezing, and having itchy eyes, despite daily allergy medication, and I knew the heat would be a problem for me, because it’s a problem every year, but this year it all added up to more than the sum of its parts, as a kind of conflagration under my skin. The allergies were worse. The heat, even the tiniest bit of it, made it hard for me to breathe. And then there was the pain, in too many places at once. Still in my neck and left shoulder, still in my lower back, right hip, knees and ankles, but also in my right shoulder, right forearm, and breast bone, making it hard to move around much, or breathe deeply, or rest comfortably.

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“Huh, we’re pretty comfortable.”

 

At first I thought it was all caused by depression, that I was having a somatic response to the stress of the job search. There’s always been a disturbing fluidity between my physical and psychological symptoms, making it hard to identify what’s going on, or what kind of treatment might help. But I noticed that I felt significantly better later in the day, as the air cooled and the inflammation receded, somewhat.

The flare, if that’s what it was, lasted about two weeks, and then I woke up one morning and I was able to breathe, and exercise, and even shave my legs! The dogs barely noticed the changes in the weather, or in me, and they seemed to enjoy chasing all of the allergens drifting in the air that were knocking me out like baseballs to the head.

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“Yummy, yummy allergens!”

In the end, I went back to my normal level of disability, and was even able to focus enough to send a long essay to a few literary magazines. In the process of choosing where to send that piece, I looked through my list of submissions over the past few years, including the queries I sent to 78 agents, over a two year period, for a single novel. I didn’t realize how persistent I’d been in trying to get that novel out into the world. I thought I’d given up too easily. I keep thinking I’m giving up too soon, being too meek, and lazy, but it turns out that I haven’t been giving myself enough credit. The novel that was rejected by 78 agents is still sitting in my computer, waiting for the next revision, for which I already have substantial notes. And Yeshiva Girl, which spent a year or two looking for an agent, and then six years looking for a publisher, still found her way out into the world, because I persisted.

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“What, this tasty paper thing?”

 

The pain, fatigue, and depression are bad, sometimes, but they pass, and I manage to push myself back on track, every time. I have to keep reminding myself that I’ve never given up, and there’s no reason to start now, even if, for a little while, the best thing to do is just to rest next to my air conditioner, with some soft pillows, and feel whatever I feel.

The dogs don’t seem to mind the company.

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If you haven’t had a chance yet, please check out my Amazon page and consider ordering the Kindle or Paperback version (or both!) of Yeshiva Girl. 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 girl on Long Island named Izzy. Her father has been accused of inappropriate sexual behavior with one of his students, which he denies, but Izzy implicitly believes is true. Izzy’s father decides to send her to a co-ed Orthodox yeshiva for tenth grade, out of the blue, as if she’s the one who needs to be fixed. Izzy, in pain and looking for people she can trust, 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?

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CBD oil for dogs, and maybe for me

Posted on January 26, 2019 by rachelmankowitz

 

A number of different people have been singing the praises of CBD oil for their dogs lately, so Mom decided that we should try it out on Cricket. Cricket is eleven and a half years old and has struggled with a reactive nervous system her whole life, and a tendency to back injuries over the past few years. The hope was that the CBD oil could help ease her pain and calm her down, maybe even make her less reactive to loud (or almost imperceptible) noises, and less likely to bark at random neighbors trying to enter or leave their apartments. We’ve tried Prozac and Neurontin and doggy Xanax in the past, without great results, so, I agreed that it was worth a shot. And they sell CBD oil at the local pet store, in bottles and baked into doggy cookies. I assumed that CBD oil, being made of hemp, would be the equivalent of marijuana, and require a prescription, but I did some research online and, supposedly, CBD oil has no THC, which is what gives Marijuana its psychoactive properties. That means you can even buy CBD oil on Amazon!

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“I’m not grumpy!”

We bought a packet of CBD cookies at the pet store, because Mom got a recommendation for a specific brand from a friend. I was a little nervous about giving Cricket her first dose, because I’d been hearing stories about humans vomiting prolifically after a single unregulated dose of CBD oil, so I broke the cookie in half, and Ellie volunteered to eat the second half. I watched both dogs for the next few hours, more for signs of distress than expecting any great miracles right away, but there was no vomiting, and no seizures, and Cricket even smiled at me, though it’s really dry in the apartment with the heat up, and it’s possible that her lip just got stuck on her teeth. I refilled her water bowl, just in case. Both girls ate a lot of chicken after their CBD snacks, but it’s chicken, and they don’t need to have the munchies to make them overeat chicken. Ellie did go ahead and eat through the parchment paper the chicken had been baked on, but that’s also something she’s prone to do, without the excuse of drugs making her do it.

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“Mmm. Chicken.”

The second day’s dose went similarly, without event, nothing negative and nothing specifically positive either. So for day three we decided to give Cricket half a dose in the morning and half in the afternoon (slathered with plenty of peanut butter, because once her sister was not sharing the treat anymore all of Cricket’s motivation to eat it disappeared). We finally gave her a whole treat on the fourth day, but the only noticeable result was a tiny bit more napping, which is hard to prove, since Cricket naps quite a lot as it is. We wondered if maybe the treats were the wrong form for her and we should try the oil tincture instead, but we put off a second trip to the pet food store, because, laziness.

The thing is, when I went to a new Rheumatologist this past fall, to see if there was some good alternative to the non-steroidal anti-inflammatory drugs (NSAIDs) I’ve been taking for ten years, which have been known to cause kidney damage, the doctor suggested CBD oil. At the time I said a polite no, because I assumed she meant medical marijuana, and that I’d need a prescription, and then I’d have to find one of the few dispensaries on Long Island, and then I’d end up hallucinating, and then eating the whole contents of the pantry in one sitting.

But a couple of days after Cricket’s CBD experiment, my own pain ratcheted up, and I saw the little bag of CBD dog treats sitting on top of the bookcase, abandoned, and decided to give it a try. I don’t generally feel tempted to eat dog food, and the first taste reminded me why: it did not taste good. Supposedly it was pumpkin flavored, but it didn’t taste like much of anything, except bitterness. I couldn’t force myself to finish it, so I shared the last few bites with the dogs, who looked up at me like, see what we have to put up with?

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“We suffer so much.”

            I took a nap soon after, and woke up feeling better; I was even able to get some exercise done. I didn’t want to make a habit of eating dog treats, but when the pain kicked in again the next day I shared the last treat with the girls, took another nap, and woke up feeling like the world might not be ending, at least not right away. Mom, because she’s a reasonable and responsible adult, said that I should call and make an appointment with the Rheumatologist to get a prescription for CBD oil or the equivalent. But I hate going to doctors, and I have no patience, so I went on Amazon and ordered the nonprescription form of CBD oil for humans. I studiously avoided the edibles (gummy bears! brownies!). I have a hard enough time eating a single cookie as it is, if you hand me a bag of gummy bears and tell me to eat only one you’re basically sending me to the hospital. I also ordered a separate bottle of CBD oil for dogs, in case there’s a difference.

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“We like Gummy Bears.”

We’ll see how it goes!

If you haven’t had a chance yet, please check out my Amazon page and consider ordering the Kindle or Paperback version (or both!) of Yeshiva Girl.

yeshiva girl cover

Yeshiva Girl is about a Jewish girl on Long Island named Izzy (short for Isabel). Her father has been accused of inappropriate sexual behavior with one of his students, which he denies, but Izzy implicitly believes that it’s true. Izzy’s father decides to send her to an Orthodox yeshiva for tenth grade, out of the blue, as if she’s the one who needs to be fixed. Izzy, in pain, smart, funny, and looking for people she can trust, 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.

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Tai Chi

Posted on April 8, 2018 by rachelmankowitz

I have tried Tai Chi in the past and found it frustratingly slow and complicated and rage-inducing. But I’ve found that yoga encourages too much flexibility for my injury prone body of late, and I need to work on my balance and managing stress better, so I am trying Tai Chi again. It helps that I found five minute lessons on YouTube, with a very clear instructor (Leia Cohen). I like that she wears loose clothing instead of skin tight body suits like other exercise instructors, who seem to feel the need to advertise the effectiveness of their exercise routines, along with their clear genetic gifts.

Tai Chi is one of the only forms of exercise I’ve found that does not interest Cricket. Yoga inspired her to stretch and paw at me and bring me her toys. Sit ups and leg lifts were a clear signal that I wanted to scratch her back for twenty minutes at a time. But Tai Chi puts her to sleep.

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“I could use another blanket, Mommy.”

I had to stop the Tai Chi experiment for a couple of weeks while the two dogs (and the bird) were visiting. I was getting so much exercise from walking the dogs, and picking them up, and breaking up fights, but also it wasn’t safe to try to do Tai Chi in the living room with three small dogs weaving between my feet.

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There really wasn’t any room for me on that floor.

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Izzy did her version of Tai Chi with a banana chip.

But, a few days after they left, I started back up again, from the beginning, five minutes a day.

I’m not sure why it feels so difficult, or why five minutes seems like my limit. I’m not even sure if the limit is physical or emotional or spiritual. There’s physical pain involved in doing such slow movements, and being aware of each movement and how it feels in my body. There’s discomfort. Maybe that’s the more appropriate word for it. Tai Chi is supposed to be moving meditation, an attempt to center in the body and breath and find some calm. And maybe calm is uncomfortable for me, and attention to the body is uncomfortable.

All of my different aches and pains seem to get air time when I do Tai Chi, like a room full of senior citizens grumbling and groaning. I try to keep them on mute the rest of the time, with medication and distraction techniques, but Tai Chi seems to take me off mute.

My hope is that five minutes a day will lead me to ten minutes and eventually I will feel stronger and more centered, but I don’t know if this will work for me. All I can do is try.

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“You go ahead, Mommy. I’ll wait here.”

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I Am Sisyphus

Posted on January 2, 2016 by rachelmankowitz

 

My therapist says that I keep putting one foot in front of the other, no matter what, and she gives me an A for effort. She expects it of me, and she’s proud of me for it, but also disappointed, because my efforts never really seem to pay off. Most of the time I feel like Sisyphus, who was punished by the gods and forced to roll a boulder up a hill, only to watch it roll back down, again and again for eternity. Sisyphus did the task each day. He didn’t just sit at the bottom of the hill and take a nap. But why not?

My dogs don’t mind pushing the same rock up the same hill every day, in fact, they seem to find new excitement in each trip outside, each stop at each leaf, each squirrel sighting. Cricket can put the same level of oomph into fighting me for extra treats every single day.

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Cricket has a very big mouth.

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Butterfly can fly!

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“Leafies!!!!!!!!”

The thing is, the dogs don’t mind the repetition in their lives because their needs are met. Their rituals work for them and are productive and satisfying. Mine don’t work for me. I keep submitting queries to agents, and stories to magazines, and getting nowhere, and I feel like I deserve this, because I haven’t paid off my debt to the universe yet. I just don’t know how I managed to build up such a huge debt.

One of the boulders I push up the hill every day is pure physical pain. Well, pure is a misnomer, because there is always the underlying belief that I cause the pain myself, with my very powerful mind. I am not always in pain, or at least not always in a lot of pain. Some days I’m just aware of something in the background, a niggling doubt that I can really carry that laundry bag, or walk to the car, or dry my hair, without having to take a nap afterward. Do I go out to do the food shopping, or do I take the girls for a walk around the neighborhood? Because I can’t do both in the same day. Some weeks, I can’t do both in the same week. By the end of food shopping, sometimes I can’t stand up straight and my neck and shoulders and back feel like they’ve been hit with hammers.

If I take the dogs out walking long enough to wear Cricket out, I will come home feeling like the world is tilting and a fiery cleaver is embedded in my lower back. And this is something I actually want to do! Forget about the laundry, which I never want to do, or washing dishes, which is truly heinous, and can put me out of commission within five minutes. Why must sinks be so short?!

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“Walkies?”

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“How about we just sit here?”

Physical pain, though, only puts me to bed, where I can still read, or write, or sleep. It’s the emotional pain that takes the gloss right out of my life; it twists how I see and hear and taste and smell; it tells me that I earned this physical pain because I am bad and lazy and useless and disgusting; it tells me that I am Sisyphus and I earned this.

In our society we believe that people get the lives they deserve. If you are successful, it’s because you earned it. If you are a failure, well, you must not have tried very hard. Sisyphus had no choice about his life-long task, and in a way, that’s how I feel too. I have been sentenced to this fate because I can’t breathe without writing. I don’t believe it has been pre-determined by God or by an external authority, but it is so hard-wired into my nervous system that I can’t choose something else.

Do I have the option of attempting more accomplishable tasks? Yes. I take on other tasks all the time that are easier to complete. Maybe Sisyphus did this too. Maybe he learned a language, or listened to books on tape, or the equivalent, as he pushed the boulder up the hill. Maybe he didn’t even see his task as meaningless because the effort itself was satisfying. I don’t know.

Cricket doesn’t need to catch the squirrel in order to find the chase satisfying. She has never actually caught a squirrel, and it doesn’t seem to dim her excitement for the task. I wish I could be more like her. Maybe she understands that even if she caught the squirrel and lived out her dreams, she would still need to get up the next morning and eat and play and chase again in order to feel alive. Getting that boulder to the top of the hill wouldn’t really change anything.

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“Hey, Cricket, what ya doin’ in there?”

 

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The Dog That Glows In The Dark

Posted on September 13, 2014 by rachelmankowitz

 

We have a bedtime ritual at our house. Most nights we (me, Mom, Cricket and Butterfly) stay up to watch The Daily Show and The Colbert Report. When the last show is over I say “The end” and turn off the TV. The dogs start to stretch and walk towards the hallway. Mom complains that she’s too tired to get up from the couch. I turn off the lamp by my computer, and then the air conditioner, and head off to brush my teeth.

"Where are you going, Mommy?"

“Where are you going, Mommy?”

By the time I’m ready for bed, Mom has turned all of the lights off, including the hallway, dining room and kitchen lights. I have to go looking for Butterfly, because she still can’t climb up her doggy steps (though she can race down them in a second), but Butterfly has taken to waiting for me at the end of the hallway and then twirling a bit in the dark and flattening down near the front door. She is bright white and therefore glows in the dark, so I can always find her, but, as neon as she is, nothing else in the room glows. So, the other night, as I bent down to pick her up, I smacked my eye against the back of a wooden chair. Correction, smacked my glasses, which smacked my eye and nose and the surrounding orbital socket.

Butterfly waiting in the dark.

Butterfly waiting in the dark.

The pain was extraordinary and I made some bizarre animal sounds and both dogs came over and Mom turned on the light to see where I was. I thought I was going to vomit, but I sat down on the floor, then flattened out, and the girls sniffed my head for injuries.

The curious puppies

The curious puppies

My immediate thoughts and feelings were anger – damn it chair! Damn it dog! Damn it Mom! And then there was some self pity, as in, why do these ridiculous things always happen to me?

Cricket was not impressed.

Cricket was not impressed.

As soon as I could stand up, I went to lie down on my bed with an ice pack on my eye, and the puppies by my side, and Mom standing over me looking very concerned. The thing I didn’t expect was the sobbing. It wasn’t a specific, wordy, list of anxieties or resentments, it was simply very loud sobbing, mixed with attempts at humor, and laughing, and asking why I was crying in the first place. I had to push hard to put the feelings into words, and guess where they’d come from and attach them to things I could reasonably be upset about.

Something about the sudden pain, or the shock, or where the injury hit my brain opened a whole capsule of emotions, and I was crying and whining and suddenly feeling hopeless about everything in my life, as if the physical pain were attached to a set of emotional fish hooks I didn’t even know were there.

The episode passed in less than an hour, but it made me wonder about the biological, or at least physiological, origins of emotional pain.

Physical and emotional pain seem to run over the same circuits in the central nervous system – which is why they’ve found that Tylenol can lift your mood and Prozac can reduce your knee pain. Many chronic diseases cause emotional pain, especially depression, simply by using up your Serotonin trying to relieve the physical pain, so that there isn’t enough Serotonin left to cushion even the smallest emotional upset.

By the next day my eye only hurt when I pressed on the area, and I had a small bruise against my nose from my glasses. The only lasting effect has been that I refuse to follow Butterfly into the dark to pick her up. If Mom insists on turning all of the lights off half a second after I leave the couch, and Butterfly insists on running into the dark to play chase, then that little puppy will just have to sleep on the floor.

Butterfly, snuggling next to a bone, on the floor.

Butterfly, snuggling next to a bone.

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The Big Bad Headache

Posted on August 10, 2014 by rachelmankowitz

 

I missed a week on the blog, but I have a good excuse. Thursday, July 31st, I went into the city for a Lumbar Puncture (AKA Spinal Tap). My neurologist wanted the LP to rule out all kinds of scary diseases he doesn’t think I have. I had to run around (or slowly traipse around) this huge hospital for blood tests and nurse visits, with aides walking me from one place to another. Hospitals should seriously consider Golden Retriever guides instead of humans – much more comforting, and just as capable of answering any questions I might have.

Delilah, my preferred Golden Guide.

Delilah, my preferred Golden Guide.

For the test itself I was placed face down on a table, with a pile of pillows under my stomach. The Novocain shot in my back hurt the way it hurts at the dentist (meaning, a lot, but over pretty soon), but then I was tapped like a keg. I felt like a maple tree with a spout hammered into my back. Then the table tilted until I was almost standing up, and the cerebrospinal fluid started to drip out. Then the table was flipped forward, like a see saw, to check the pressure of the fluid. Then back for more dripping and forward for another pressure, then finally flat, tap removed, and transferred to a stretcher to be wheeled to recovery to lay flat for an hour.

The explanation for the hour on my back was that it would help avoid a leak of spinal fluid that would lead to a bad headache. I assumed the headache would come on soon, if it was going to come at all, so when the hour passed I began to think that (for once!) I’d fallen on the good side of the percentages and wouldn’t have a bad reaction to the spinal tap.

All day Friday I rested with my puppies at my side, because the doctor had told me to avoid too much activity and because I was exhausted. I felt a bit dizzy, but I was still congratulating myself for not getting the terrible headache.

Cricket was supposed to be my foot rest here. Hmm.

Cricket was supposed to be my foot rest here.

Saturday morning, Cricket woke me at five AM I felt a bit odd, but I usually do at five AM. I tried to go back to sleep, but with each hour my head started to hurt more, until I tried to stand up again and the world exploded.

I couldn’t walk much further than the living room without extreme pain, but I still thought that if I took Tylenol and drank caffeine, as recommended, the headache would pass.

When I woke up on Sunday morning, I tried to stand up and the pain was crushing. That’s when I started to panic. It felt like an alien creature was crawling through my skull and sticking its rhinoceros-tough fingers through my eyes and ears and down my throat. I took pain pills and Pepto Bismal and drank caffeinated tea and tried not to listen when Mom mentioned the emergency room.

At some point, I don’t know when, I started to throw up, a lot. There was a pink puddle on the tile floor of the bathroom, with little islands of white pain pills floating in it. I went back to my room to lie down and the puppies piled on top of me, but I had to move them to get to the bathroom and throw up again, and again.

Mom called my neurologist and his colleague said to call an ambulance and go to the emergency room, for a procedure called a blood patch, where my own blood would be taken from my arm and put into the epidural space, to stop the leak of spinal fluid. Somehow they had forgotten to warn me that the headache would come on after a few days, and that it would be a positional headache, meaning that any time I lifted my head, bombs went off.

The paramedic came with two police officers, and I could barely get out of bed and into the wheel chair, where the vomiting continued as they carried me down the stairs and out to the ambulance. Everything was blurry because I couldn’t wear my glasses, but Mom told me later that the towel that magically appeared in my hands came from our very kind downstairs neighbor.

There’s something about extraordinary pain that makes you lose all vanity. You do not care that vomit is dripping from your face, or that you’re still in your sweaty pajamas and you never brushed your hair. Who gives a fuck, just help me!

At the hospital, eventually, something was injected into the IV in my arm that calmed the nausea, and Fioricet and constant fluids were prescribed for the headache. Then the pain management specialist/anesthesiologist came over to tell me that the OR was closed on Sundays, so I would have to stay over night for observation until he could get me scheduled for the blood patch on Monday. Bye.

The ER doctor explained, in the aftermath, that I was better off staying in the hospital because if I tried to go home I was very likely to destabilize and end up back in the ER.

Mom went home to walk the girls and to bring me some things, and by the time she came back I was much more coherent. She brought me a picture of Butterfly with a sock in her mouth, because Butterfly had run into my room, picked up one of my dirty socks from its home next to the laundry basket and then ran to the front door with it. Because she missed me.

"Mommy forgot her sock!"

“Mommy forgot her sock!”

One thing I noticed about being in the hospital: no matter why you are there, every nurse, doctor, aide, and PA asks about bowel movements. Some of them press a stethoscope to the belly to listen for interesting noises. I had to apologize to them for my quiet belly, and explain about the amount of vomiting I’d done, without much subsequent eating. I felt like an underachiever; though I was peeing constantly from the fluids, so I wasn’t a complete disappointment.

My neurologist called from the city on Monday to tell me that the results from the LP had come in, all clear. So, sorry, but you seem to be going through all of this for nothing.

More blood was taken, for some unexplained reason, and a surprise CT scan, and blood pressure checks every five minutes, so I was kept busy until it was time for my procedure in the afternoon.

The anesthesiologist came by before the blood patch to explain that this would be more painful than the original LP, but hopefully successful at patching the leak, and ending the headache. Hopefully. For this procedure there was a pre-op nurse, two OR nurses, a post-op nurse and a few other people who didn’t introduce themselves. The head operating room nurse had pictures of Butterflies on her cap and Mom took that as a good sign, that my puppies were with me in spirit.

"Where's Mommy?"

“Where’s Mommy?”

The operating room was very bright, and huge, and intimidating, especially with my face down and half my butt sticking out. One of the nurses held my hand and patted my head, while the doctor shot me with Novocain and started to dig into my back with a needle. Then he was taking blood from my arm to insert into the epidural space, and decided to tell his colleagues about the guys who first discovered that shooting cocaine into the spinal column could cause such pain relief that you could hit each other in the legs with baseball bats, and squeeze your gonads with pliers, and not feel a thing.

Then he went back to sticking needles in my back and hitting them with hammers and squeezing lemon juice and razor blades under my skin, or whatever it was he was doing back there.

When it was finally over, I still felt like there was an axe embedded in my lower back, but after the required hour of lying flat I was eager to sit up and prove that the headache was gone and I was ready to go home. I felt like a pin cushion and didn’t want to spend another night in the hospital and risk more surprise procedures. It took until 9:45 PM for the discharge papers to come through, but I finally got to go home to my puppies and my own bed.

Cricket can make anyone into a pillow.

Cricket can make anyone into a pillow.

I was proud of myself for managing well, for communicating clearly and talking to a million people and doing everything I needed to do, but having Mom with me made all the difference. Everyone should have a Mommy like mine. But I still think there should have been puppies at the hospital. I don’t know what they’re thinking not having puppies on staff.

Wouldn't they be great as hospital greeters?

The new hospital staff!

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Petting Dogs

Posted on May 10, 2014 by rachelmankowitz

 

My dogs are scratchy gluttons. If I keep going with the scratchies for as long as they ask, first they yawn, then they close their eyes, then they start to relax into mush, and then they don’t need any more scratchies because they are asleep.

"Excuse me. I'm getting my scratchies now."

“Excuse me. I’m getting my scratchies now.”

If Cricket’s feeling grumpy and I start to scratch her head and ears and under her chin, I can almost see the neurons making better connections in her brain and sending calming signals throughout her body.

"I'm not sleepy at all. More scratchies."

“I’m not sleepy at all. More scratchies.”

Given the amount of petting my dogs seem to need every say, I wonder how humans survive on so little. Just to get through a harried day of walks and meals and naps, Cricket tells me, she needs at least an hour of petting. She knows instinctively that petting is good for her, that it makes her feel better – whether it’s freeing up her chi, releasing neurotransmitters, or relaxing her muscles, she feels better because of it.

Butterfly loves her scratchies.

Butterfly loves her scratchies.

And, finally, Cricket has been scratched enough.

And, finally, Cricket has been scratched enough.

Dogs are safe to touch, because we aren’t afraid that they will misconstrue our attentions, and because if they don’t want to be touched they are not so polite that they will continue to allow contact, the way humans will. Humans are often too polite for their own good, trying not to hurt someone else’s feelings and sacrificing their own safety instead.

Touch between humans can go so quickly from comforting to threatening. If someone you like and trust squeezes your shoulder or gives you a hug, that can make you feel better. But if someone you don’t like, or don’t know, does the same thing, the violation of boundaries can be overwhelming. We have so many (necessary) rules in place to protect us from unwanted and threatening human contact, but not much has been clearly stated about what kinds of healthy touch we need.

Medicine is often practiced from a distance, through scans and blood tests and a few vague questions, but there’s a lot to be said for the idea that touch can be used to diagnose, and especially to treat, certain problems. Touch in general can be a way to transmit kindness, which is one of the most healing things we can give each other.

My mother has been having nerve pain and numbness in her feet for the past few years and numerous doctors and tests and medications have failed to relieve, or even to diagnose the cause of the problem. Feeling desperate, Mom finally took the recommendation of a friend and tried a cranial sacral therapist. He’s a doctor of osteopathy and covered by Medicare, so she figured it wouldn’t hurt to give it a shot.

He talks about moving plates in her skull and other hoo haa things that don’t make much sense to me when Mom reports back about her visits, but as a result of these treatments, her pain is going away. And with each visit, the pain stays away longer and longer. I don’t understand any of it, but it seems to be working.

I’ve had a few EEG’s over the past few years and, though I’m not a fan of the 24 or 48 hours of traipsing around with machinery attached to my head, I love how it feels as the little sensors are individually attached. I don’t know why this is such a magical feeling. I feel the same thing when my hair gets shampooed before a haircut. It’s not the same as a massage, where only skin is being touched. I wonder if this is what petting feels like to my hair-covered dogs, as if the touch reaches down to the root of the hair, deeper than the skin.

In summer camp, girls braided each others hair or drew letters on each other’s backs with a finger, as an excuse to touch and be touched. And it relieved some of the homesickness we all felt.

My dogs try to pet me, each in her own way. Cricket paws at me, or lifts my hand with her nose, when she wants me to scratch her, and then cuddles into my side or onto my lap. Butterfly noses my head if I’m exercising on the floor. She likes to sniff my hair or my armpit and then sit there and stare at me while I do my crunches. But her real offering is the way she licks my hands with such love and care. It’s not quite the same as petting, but it might actually be better.

Butterfly lickies on the way.

Butterfly’s licks are on the way.

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