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[selfindulgenttiger]

Someone asked how I feel about the concept of "curing" autism with a drug treatment. My initial reaction is that it's horrifying. Autism is not a disease. It's a neurotype. It shapes how I see and interact with the world, because it affects my cognition, emotion, sensory processing, and social relationships. It's fundamental to who I am - even though I didn't know that until age 50. So the idea of "curing" who I am... It's offensive on a gut level. It feels like slipping back into the era of eugenics, when they sterilized the mentally ill or developmentally delayed so we couldn't reproduce and spread our genes. It is, at the very least, autistic erasure. At worst, it could be viewed as a form of genocide.

However, I know that my reaction may be colored by being both late diagnosed and high masking. I wouldn't begrudge an adult who wanted to try a medication that removed any troublesome issues related to their autism. For people whose sensory issues or social issues are so much worse than mine, they might welcome a way to become closer to neurotypical. If there's a trade-off involved, it's up to them to choose for themselves. The problem is that this will be done to children, not as their own choice but that of their parents. And that's disturbing. Does the fact that a parent may be having difficulty with a child's behaviors justify potentially taking away part of their identity or their gifts? Changing the child's whole relationship with the world? Is that really their right, to change who a child is and will be for their own comfort?

I think about some of the famous autistic people and what their contributions have been to the world. And not just scientists, chess masters, and computer nerds, but activists, artists, authors, actors, and musicians with autism have changed their fields. Autistic people behave differently, yes. But more importantly, we think differently, and that leads to new ideas and new approaches. Do we really want to lose that?

[selfindulgenttiger]

Childhood Clues

I was discussing with someone today the fact that, to be diagnosed with autism as an adult, you have to have shown signs in early childhood. Depending who you ask, that's before age 6, age 8, age 11, or age 18. With so many people (women most often) being diagnosed as adults, some people are questioning the frequency of diagnosis. (Untreated C-PTSD and PTSD symptoms can manifest very similarly to autism.) That started me reflecting on my own childhood behavior and what clues were missed or dismissed. I wanted to catalogue them (because I'm autistic and that's what we do with information). This is stuff from early childhood to pre-teen years. Category A: Deficits in social communication and social interaction

This area of the diagnostic criteria is the hardest for me to judge, because you don't really see your own deficits in this area. If you don't understand what the social rules are, you don't see how you are breaking them. What I can say is that I never made friends easily, and I wasn't particularly bothered by that until I was old enough to realize I was perceived as weird because of it. From second through fourth grade, I don't remember having a friend. I typically spent recess walking in a circle around my favorite tree, which I enjoyed. I was the outsider everywhere. I didn't make friends in Brownies, I didn't make friends in my performing arts classes, I was even "the weird kid" among the gifted kids. Another part of this is your nonverbal communication. There are literally dozens of photos of me with a flat affect from early childhood. Smiling never came naturally to my face. And I assume there was something off about my eye contact and general manners, because I remember my dad explicitly teaching me to make eye contact, smile, use people's names, and express warmth. (He had read it in a book, so obviously this was novel information to Dad, too, that he felt compelled to share.)

Category B: Repetitive behaviors and restricted interests.

This? Not so hard to spot. I knew I was different in this way. I just didn't understand that it meant something. The first point is basically stimming. Where to begin? Lifelong constant knuckle-cracking. Nail, cuticle, and lip biting till I'd bleed. Knee-bouncing. Echolalia in the form of this high-pitched screech sound I enjoyed making, and singing the same songs again and again and again and again. (I still sing them when I'm really stressed.) My interests were definitely what they mean by "restricted interests" which is basically what we'd call "obsessed" in the lay vernacular. Like I became obsessed with mice from around 7-12. I accumulated 41 mouse stuffed toys that I did not play with but arranged in a tableau. I wanted pet mice, even though they're very short-lived compared to other pets and I'd have total meltdowns when one died. I would talk my parents into getting me another and tell them I'd be able to handle it this time, but I never could. (I also collected Weebles, Barbies, Smurfs, and Cabbage Patch Kids, but no other stuffed animals. Most kids have a mixture of different stuffed animals, but I only wanted mice. I didn't actually really play with the other toys either. I just liked having collections and creating tableaux.) Star Trek was such a fixation from elementary school on. Every year they'd have a 3-day Labor Day weekend marathon on one of our local stations. I would try to stay up for all three days. One year, on day three, I yanked the phone out of the wall for having the temerity to keep ringing during a favorite episode. I had all 79 episode titles and descriptions memorized. I sneakily studied my uncle's copy of the technical manual for the Enterprise, even though he didn't want me touching it because it was collectible. One of the greatest disappointments of my young life was not convincing my parents to take me to the convention. I never played soccer or particularly liked soccer, but I went to all the Strikers games with my dad. He would buy me a program and I would memorize the roster of every team. Then when he'd say "great play by number 12" I would tell him all that person's stats. I didn't love the game, but boy, did I love the stats.

Another thing that falls under this category is sensory sensitivities. I had the stereotypical autistic girl hypersensitivity issues (which for the record are screaming when your hair gets brushed, rejecting blue jeans and socks because of the seams, and complaining about the sound of electricity in the walls or bugs walking). But I also have my own oddball ones, like rejecting shoes. I had to have the tips of three toes reattached before age 10 because I wouldn't even wear shoes when riding a bike or walking outdoors. My poor parents had to take me to the ER so many times. (I still cannot bring myself to keep my shoes on any more than is strictly necessary.)

I also rejected any clothing that was textured (so no corduroy in the 70s) or had heavy seams (no jeans even at the height of the Gloria Vanderbilt trend). I would steal my dad's work shirts because they were smooth. For several years, I went to school in scrubs I got at a yard sale. (Scrubs. In middle school. You can guess how that went.) And finally, of course, the overstimulation issue. I had a meltdown and ended up fighting with my mom or crying at every holiday gathering ever. I ran away from my own 10th birthday party and hid for half an hour because my grandmother was going to give me a kiss. My mother loathed taking me on vacation because I invariably got super excited and then overstimulated and then had a meltdown. By the time I was a teenager, she swore she'd never take me again.

When I look back, yeah, it was very clearly there but no one knew what it was. I just seemed like an unruly, melodramatic, weird kid. (And maybe not all the weird in my family.)

[selfindulgenttiger]

Being a "freak of nature"

My former boss and I were once arguing over a job posting we were creating. I was protesting that a person didn't need certain educational qualifications for the position if they had the requisite knowledge, and he asked how they were going to have the knowledge without that educational background. I said, "I do!" and he snapped back, "yes, but you're a freak of nature!"

While that may sound unkind out of context, what he meant (to use the three dollar words) is that I'm an autodidactic polymath. I have self-taught proficiency in a wide number of fields. But the words "freak of nature" actually sat well with me. It felt like an acknowledgement of my rarity.

Every human being is unique, in that we have different combinations of qualities, traits, and experiences, and no two combinations are exactly the same. But those qualities, traits, and experiences themselves can be common or rare. And believe me, when you're "rare", you know it.

Some of that knowledge is from being called "weird" or being left out because of your differences. Or it may be because of prejudices about who or what you are. But oftentimes, the knowledge comes just from the fact that it's so difficult to find someone who can relate.

That's definitely a challenge for me, because I'm rare in many different ways. Because my brain likes lists, here's my list of things about me that represent less than 3% of society - some silly, most meaningful: Physicality Ambidextrous - 1% Green-eyed - 2% Neurology Autism - 2% Aphantasia - 2% IQ score - 1% Culture Ashkenazi Jewish - >1% Jehovah's Witness - >1% Vegan - 3% Health Fibromyalgia - 2% Psoriatic arthritis - 1% Palmoplantar pustular psoriasis - >1% Hidradenitis suppurativa - 1% Sjogren's syndrome - 1%

There are other rare differences that I have no way to quantify, like the fact that my brain has anomalous blood vessel structures on MRI or the fact that I'm allergic to a phytochemical in orange foods. And there are other things that are not quite rare, but uncommon, like being a native Floridian in an area of the state where only 10% are or just having autoimmune disease (8% of the population, although technically only about 2% of the population have 3 or more autoimmune conditions as I do). As you can imagine, the more rare things about you, the more difficult it becomes to find someone who is like you. You become a minority within a minority. While there's often crossover within these domains (for example, it's not unheard of to meet another Witness of Jewish background, or another autistic person who has aphantasia, or a person who has two of my health conditions), it's diminishingly unlikely to meet people with crossover between multiple domains. I'm unlikely to meet another Jehovah's Witness who knows what it's like to be a late diagnosed autistic with severe allergies and multiple autoimmune diseases.

So this is challenging, being multiple types of rare, especially when so many of those ways are really central to who you are, how you communicate, and what you enjoy. Frankly, it can be pretty lonely. But it's not all bad. While much of the awareness of your own rarity comes from negative experiences, it can come from positive ones as well. It can come from exceptional accomplishments, from the appreciation of others, from finding your community, or simply from enjoyment of the fact that something about you is special. I guess it all comes down to whether you like those qualities about yourself.

For me, while I could do without the health conditions, I'm pretty happy about the rest. I'm proud of my choice to be one of Jehovah's Witnesses and my choice to be vegan. I love my Jewish heritage and the unique way my brain works. I'm even happy that having all these health conditions has taught me to be a more compassionate person and a fierce advocate for people with chronic illness and disability. So I guess overall, I'm okay being a "freak of nature."

[selfindulgenttiger]

Autism and Me

It took me an embarrassingly long time to catch on to the fact that I might be autistic. When friends and loved ones - people I understood and could relate to - were diagnosed, it somehow still didn't occur to me that I could be autistic too. It wasn't until my dear niece Skyler sent me the assessment that measures how much you might be camouflaging autistic traits - particularly in the social arena - that it clicked for me.

I think that's because I had faulty ideas of what autism looked like to begin with. It's not that I thought - as some do - that all people with autism are nonverbal or have severe developmental delays. But frankly, the portrayals I'd seen of autism in media were... male. And that's the problem - autism usually presents very differently in girls and women, but until fairly recently, there was no attempt to identify how exactly that was. Myriads of women have been overlooked for diagnosis because the description of the condition was based on the presentation in males.

Men with autism are typically presented in the media as being rigid, loving routines, blunt to the point of rudeness, having very narrow fields of interest but being experts in those subjects, and having little empathy and poor grasp of social norms. With no point of reference, how could I grasp that tactful, empathetic people with broad ranging interests and little ability to adhere to a schedule could be autistic too?

But after I took the camouflaging assessment and scored higher than the average for even autistic women, I decided to learn more. And here's what I learned: The current thinking on autism is that it stems from a failure of the natural process of pruning synapses in the brain as children grow. As a result, autistics brains are busier. One study showed autistic children's brains are 42% more active at rest than non-autistic (allistic) people. For many of us, that expresses itself in sensory issues and reduced emotional regulation. Looking back, that was the story of my childhood.

What is also challenge - for almost all of us - is social skills. They do not come naturally, and are often actually completely against our inclinations. I'm going to be frank. If you've ever seen me in a social situation, you've seen me camouflaged - basically "faking it." While I'm speaking to you, I'm consciously monitoring and adjusting my level of eye contact, my facial expressions, my body posture, my tone, every aspect of my being while simultaneously trying to actually keep up with what you're saying. I'm constantly thinking about making sure I pass as "normal" and its exhausting.

But though that presents challenges, I still view my autism as a feature, not a bug. Some traits I feel I have that are common among autistic women:

unceasing intellectual curiosity

a powerful need for justice and fairness

strong reasoning, logic, and pattern recognition

a natural skill for organization of information

the ability to think both deeply and quickly

close adherence to ethics and values

boundless enthusiasm for the things we're especially interested in

strong emotional empathy (cognitive empathy is a different story)

These things unfortunately can cause problems for autistics living in an allistic world, but in and of themselves, they are strengths, not challenges. All in all, my autistic traits are - or have become over time - positives in my life, or at least neutral. This process of learning that happened between suspecting I might be autistic and getting the formal diagnosis yesterday has been an affirming one, and now I'm proud to say I am an autistic woman.

[selfindulgenttiger]

Traveling while Chronically Ill

I recently came back from a trip to a conference on the opposite coast. Because the arthritis and spasticity in my back has been altering my gait and balance, I had to use a cane for the first time in a long time. This drew the notice of concerned colleagues, although most were too polite to comment. But that led to me thinking about all the things I have to carry that they don't see. This trip alone, I packed the following: * 6 daily medications * 5 prescribed daily supplements * 1 injection requiring refrigeration * muscle relaxers * allergy-safe pain relievers * allergy-safe antihistamines * epi-pen for severe allergic reactions * allergy-safe soap, shampoo, conditioner, and lotion * allergy-safe lip balm * zinc soap for skin lesions * gauze and bandage tape for severe lesions * allergy-safe band-aids * 2 types of prescribed eye drops * wrist brace * cotton gloves for overnight skin treatment * alcohol wipes * allergy-safe plane snacks * six face masks

Also, as soon as I arrived I went to Whole Foods and stocked my mini-fridge with safe food, knowing I wouldn't be able to eat with everyone else most of the time. I was conservative this trip because I was only going for four days. For longer trips, I'd be carrying two additional refrigerated injections with a cooler bag, an electric heating pad, a refillable ice pack, and an infrared light device for skin therapy. And possibly ankle and knee braces, depending on how I was doing.

This list of items represents my daily care for psoriatic arthritis, Sjogren's syndrome, hidradenitis suppurativa, migraine, and fibromyalgia, and my preventative care for severe allergies. You see the cane and the brace, but there's a lot more going on behind the scenes. I guess my point is, if you can get ready for a trip by packing your clothes, toiletries, and electronics, consider your able privilege. If you can use the soap the hotel provides, consider your able privilege. If you can eat the food the conference offers, consider your able privilege. I love to travel, but it takes a level of planning and preparation for me that many people will never have to experience.

[selfindulgenttiger]

The Third Love

Most everyone, religious or non-, is familiar with what is referred to as “The Golden Rule.” This is often expressed as “Do unto others as you would have them do unto you.” This is a paraphrasing of Matthew 7:12 in the King James version of the Bible, which in modern English reads: 

“All things, therefore, that you want men to do to you, you also must do to them. This, in fact, is what the Law and the Prophets mean. “  NWT

Essentially, this means:

 “Treat others how you want to be treated.” 

This principle is not only a basis of the Biblical law, but also the basis of our modern laws. For example, the law of the land prohibits stealing. Why? Because none of us want to have our things stolen. Human law prescribes how we want to be treated, and we follow the law because we recognize the inherent social contract. 

But Jesus went on to elaborate on this principle, showing that it shouldn’t come from unemotional self-interest. He was asked what were the most important parts of the Mosaic Law, and he shared this same principle, using the original wording of the scripture he was previously referencing. The whole passage is at Matthew 22:36-40. In the New World Testament it reads:

“Teacher, which is the greatest commandment in the Law?” He said to him: “‘You must love Jehovah your God with your whole heart and with your whole soul and with your whole mind. This is the greatest and first commandment. The second, like it, is this: ‘You must love your neighbor as yourself.’ On these two commandments the whole Law hangs, and the Prophets.”

Here Jesus is quoting from Deuteronomy 6:5 for the first commandment and Leviticus 19:18 for the second.

It makes sense that our obedience to law should stem from love (the Greek word here used denotes a kind of unselfish, principled love - what would secularly be understood as altruism). Basing our actions in self-interest only goes so far to maintaining the social contract. As soon as the law comes into conflict with self-interest, the law goes out the window. (And it’s much more common for the law to come into conflict with self interest than it is for the law to come into conflict with altruism.) So here Jesus explains that these three types of love are the underlying message of the scriptures. 

Wait, you may ask, three types? He only mentions two - loving God and your neighbor. 

Not quite. Let’s look at that second commandment carefully. “You must love your neighbor as yourself.” If we add the implied words, it would read:

“You must love your neighbor as you love yourself.”

Yes, in both the Hebrew and Christian scriptures (remember, Jesus was quoting), we are commanded to love ourselves. Take a minute and let that sink in. What does this really mean? It is love in perfect balance, complete equivalence. To put it in visual, mathematical terms...

This is a statement of two equal factors. Love is the common denominator, and neighbor and self are the same. Therefore, we cannot properly love our neighbor if we do not properly love ourselves. We often see this scripture discussed in the context of not allowing an elevated view of ourselves. And it’s true that self-importance or selfishness would destroy the balance of the equation. If we have a double portion of love for ourselves, others are no longer equal to us in our own view.

But it’s equally true that we cannot love ourselves too little and have that equation in balance. If we fail to care for ourselves, even while attempting to care for our neighbor, we lose that common denominator of love. 

Why, exactly, would we need to love ourselves in order to love our neighbor? If we do not love ourselves, we won’t believe we deserve to be treated well, which in turn can warp what we believe others deserve. 

We see this played out plainly in the cycle of abuse: A child is abused and does not learn to love themself. In turn, they treat their children the way they were treated. The apostle Paul touched on this connection between abuse and self-love in his letter to Christians in Ephesus, when he said. 

“In the same way husbands should love their wives as their own bodies. A man who loves his wife loves himself, for no man ever hated his own body, but he feeds and cherishes it, just as the Christ does the congregation” - NWT, Eph 5:28,29

This scripture gives us insight into what loving yourself means. If it is reflected in “feeding and cherishing” ours bodies, then it is relevant to so many self-harming behaviors we see today. 

Eating disorders

Drugs

Alcoholism

Self-harming/cutting

Risky sex

Toxic relationships

Self-neglect

On the other hand, proper love for ourselves would be reflected in behaviors such as:

Maintaining healthy relationships

Keeping work in balance

Managing our stress

Caring for ourselves physically

Attention to our mental health

Addressing our spiritual needs

Appreciating our own value

Are we doing these things? This is a moment for self-reflection. Do you run yourself ragged and then resent other people for not doing the same? Do you ignore your poor mental health and then when others struggle, tell yourself they should be able to “tough it out” like you do? Do you allow unhealthy patterns from your childhood to be passed down to your children? These are just a few ways that neglecting to love yourself can skew your perspective on how you treat others. 

Having a proper love for ourselves gives us an accurate view of how we want to be treated. We can apply that knowledge to how we treat others, thus fulfilling the Golden rule. 

As Jesus explained, if we combine these two loves (neighbor and self) with the first love (love of God), there can be no just law of God or man that is against us. 

It’s important to note that Jesus gave these things clear priority: 

1. God (or for our secular friends, those highest principles which God represents: love, justice, wisdom, and the proper use of power) 2. Neighbor (other people) 3. Self

This wasn’t to say that any of the three aren’t vital, but is an order of priority when they come into conflict. So if there is a conflict between your self-interest and your principles, principles come first. That doesn’t reflect a lack of love for self, but a love in proper balance and position. 

My point is simply this: Remember the third love is part of the equation. We can’t achieve equality and balance without it.

Love God. Love your neighbor. Love yourself.

[selfindulgenttiger]

The Control Delusion

I am not in control of my health. Neither are you in control of yours.

I don’t mean to suggest that we can’t influence our health, sometimes to a very great degree. But especially for those of us who are chronically ill, the belief that we are in control can be dangerous. The effects can range from minor emotional effects to serious physical harm.

The first time I witnessed this was with a lady I’ll refer to as Carolyn (not her real name). Carolyn had multiple sclerosis at a time when no medications were available for its treatment. She threw herself into the study of alternative treatments, and her health did improve. After many years, she was still doing reasonably well. But every time her symptoms would flare-up, she would throw off whatever she’d been doing before as ineffective and move on to the next new fad in the health food store. When her symptoms would remit (as they often do in MS), she would hold onto the idea whatever treatment that she was taking at that moment had ‘cured’ her. At this point, medications had become available for her condition but she rejected them. Meanwhile, the damage from all the relapses she had began to accumulate. The last time I saw Carolyn, she was telling me how she’d been cured by human growth hormone, all the while she couldn’t walk without using the wall for support. That afternoon, she had a bout of bowel incontinence, but continued to insist her MS was not progressing. 

Was it just that Carolyn was gullible? Did she buy into claims from a smarmy snake oil salesman? No. This was an intelligent woman, not easily taken in. She allowed herself to be fooled, because she wanted so desperately to believe that she could control what was happening to her. Had she accepted that she wasn’t cured years earlier and tried medication, might she have been better off? We’ll never know for sure, but the statistics indicate that yes, she probably would have been. Her denial may have caused her serious physical harm.

Having seen such a profound example of this delusion of control at a young age, you would think I’d be easily able to avoid falling into the same trap. But it’s not so easy - especially when something you’ve done has worked.

I went vegan seven and a half years ago, and the positive effect on my health was immense. After years of constant pain from fibromyalgia and psoriatic arthritis, I became almost asymptomatic. I would have the occasional flare-up, usually when my diet was poor and my stress high, but they rarely lasted more than a day or two. Although I ought to know better, I started to believe I was in control of my health. 

On December 15th, I caught two viruses simultaneously from two different sick children. I got better, and then immediately caught a third virus. I recovered, then had two wisdom teeth pulled. A few days later, I came down with the flu. For two weeks thereafter, I was miserable with a terrible cough. I also became anemic. Then the mangoes flowered and the pollen kicked my allergies into high gear. Thankfully, mid-March saw me on a plane for five days in California, then another five in north Florida. That was enough time to begin to feel well again. 

I came home finally ready to get my life back. And then my immune system - in high gear for over three months but no longer with an enemy to fight - began to attack my body. I experienced severe pain, overwhelming fatigue, and stiffness in my joints like I have not experienced since going vegan. 

Immediately, my mind started grasping for what I’d done wrong. I fixed this, I thought, when I went vegan. Can I fix it again? Am I just not eating healthy enough?  

I eliminated sugar and gluten. I cut out processed foods. I ate 3-6 cups of cruciferous vegetables a day to feed my gut bacteria. These things are all based in solid science for reducing inflammation and they helped, but they didn’t stop the attack. 

Frankly, I realize now there is nothing I can personally do that will stop the attack. I can support my immune system, I can reduce inflammation, I can bolster my overall health, I can even try medication, but I cannot control my disease.

It’s so easy to be lured into thinking that management is the same as control. For all these years, I’ve been managing my disease, and managing it well. It has been 20 years since my diagnosis with a degenerative arthritis and I��m still on my feet. But here I am, berating myself for not doing enough to prevent this from happening, turning myself into pretzel trying to figure out how to stop it now that it has.

It bears repeating: I cannot control my disease. I can’t control whether I catch a virus. I can’t control the pollen count. I can’t control any number of interpersonal and environmental factors that can affect the state of my immune system - some of which are probably yet unknown to medical science. 

So I have to let go of control, and remember that my illness is that machine I call ‘my body’ malfunctioning, not user error. My job is to keep the machine running as long as I can, as well as I can, but I don’t have the technical know-how to fix the malfunction. That’s okay. Malfunctioning or not, the machine still keeps going.

[selfindulgenttiger]

Ways to be Jewish

I am not shy about telling people that I’m an ordained Christian minister. Neither do I hesitate to let people know that I am Jewish. 

While I do not practice Judaism, let no one say that I am not a Jew. My DNA is 50% Ashkenazi Jew. My habits, personality, and world view are influenced by Jewish culture. Perhaps most deeply-rooted, today I coined a term to describe myself as a “culinary Jew.” 

Jewish food is my culinary heritage, my “comfort food”, and practices that stem from Judaism inform my approach to food. Saturdays when I was a kid meant a walk to the neighborhood butcher to buy deli foods - stuff for salami sandwiches with NY-style potato salad (the only acceptable potato salad style). Sundays often meant an early morning drive to Bagel Nosh (a baker’s dozen assorted, with one salt for Mom, a pumpernickel for me, and always cinnamon raisin for the twins). Lunch with my grandmother usually meant someplace where sour pickles, onion rolls, and coleslaw arrived before you even ordered. These were clear traditions for us, but even years later I am still untangling all the subtle ways Jewish life influenced my food choices. 

For many years, I would not have conceived of putting mayonnaise on a sandwich, only spicy mustard. (Milton Berle famously quipped, “Anytime somebody orders a corned beef sandwich on white bread with mayonnaise, somewhere in the world, a Jew dies.” It was only as an adult that I learned there was a cultural aversion to it I had unknowingly absorbed - I just watched my husband slather it on roast beef and assumed it was a weird Southern thing.)  And yellow mustard? What was that watered-down stuff? Hot dogs were kosher, period. Not that bizarre “plumps when you cook it” thing, for sure. “Good bread” didn’t mean nine-grain organic wheat or artisan rolls, it meant a golden challah or maybe a heavy marble rye. Any sandwich shop that didn’t give you a pickle spear with your sandwich was chintzy. Oh, and I was truly appalled the first time I saw a person pop a frozen bagel in a toaster then slather it with butter. 

And again with the mayo! I remember the revulsion I felt when my best friend’s grandmother presented us with fried bologna sandwiches on white bread grilled with mayonnaise, instead of butter. And seeing my coworker dipping his french fries in mayo. *shudder* I eventually learned to like the stuff on tomato sandwiches (that really is a weird Southern thing), but on a nice seeded rye. 

There were the Gentile foods that were just a bafflement to me. Growing up in a neighborhood that slowly morphed from redneck to Caribbean, there was a lot of that. The earliest one I remember was pickled pig’s feet. (How did that look appealing to anyone? Who thought, “I not only want to eat Porky’s foot, I want to pickle it first!”?) A lot of things that came from pig, actually. My friend’s brothers thought it was funny to trick me into eating pork cracklins. (I was vegetarian at the time of that little prank - coming from a mixed household, I was unfamiliar with a lot of pork products, but I wasn’t so much opposed to bacon back when I did eat meat.) Then Caribbean friends’ love of goat took me totally by surprise.  Clearly my tastes were shaped by religious food requirements, but it’s also true that they were shaped by tradition. Desserts, for example. Jewish desserts tend to be less fatty and less sweet than those of many other food cultures. (Compare the ratios of sugar to flour in this Hamantaschen recipe and the similar jam thumbprint recipe to see what I mean.) And not that I don’t love a big ol’ slice of chocolate cake with ridiculously fatty frosting on top now and again, but if I had a choice between that and a slice of babka? I’m taking the no-frosting, no-icing, deliciously flaky babka. If I have a choice between a buttery Tollhouse chocolate-chip cookie and my mom’s mandel brate? Mandel brate all the way. Halvah over fudge, rugelach over danish, it’s always the Jewish dessert that wins. 

Similarly, tradition affects the way Jews cook with the ultimate comfort food - potatoes - which are usually cooked with onion, never greasy, and often paired with something sour. I’ll take latkes or a good knish over any other form of potato dish in the world, every time. Give me a little sour cream or apple sauce and I’m in bliss. My point, other than to express my deep and abiding love for these foods, is that being Jewish is more than just your religion, or your traditions, or your DNA. It’s a complex set of factors that play into your identity, a sum of experiences over generations upon generations that created something in you today. 

I think I first had this realization a decade or so ago when I saw my brother’s Facebook profile, where he identified as “slightly Jewy.” At the time, his twin sister had fairly recently been married in a synagogue, and only a few years before that, I had been baptized and ordained as a Christian. All of us were raised by the same Jewish mother, but we were each Jewish differently. 

My aunt and I were talking recently, and she said something to the effect of “I’ve been around your mother long enough that a little Jewish culture has rubbed off.” It’s true - my mother passed on many bits of Jewish wisdom: where to find the best Chinese food in town, how to avoid paying retail, useful Yiddish words (mostly rude), and especially, the priceless value of Aunt Roz’s mandel brate recipe. (One of the happiest moments of my life was when I figured out how to make that recipe vegan!) If my aunt, without a drop of Jewish blood and no Jewish ancestry, can be a little bit culturally Jewish, then anyone can. With Antisemitism openly on display once again, this understanding is all the more important. Those of us who are Jewish in less traditional ways are in a unique position to educate and promote peace. But that means understanding that your way of being Jewish is valid. 

[selfindulgenttiger]

I agree with the tips for managing chronic pain this article contains, but I think that it misses the most important point. What we need is to put pain in an appropriate context. In the words of The Dread Pirate Roberts, “Life is pain, Highness. Anyone who tells you differently is selling something.” We start our lives screaming with the pain of being forced from the womb, and immediately the process of trying to soothe pain away begins. Through childhood, we receive the message that pain is avoidable (”Don’t do that - you’ll hurt yourself!”) or easily curable (”Shhh, shhhh. Don’t cry. Mommy will kiss it better.”) These thing are often true, but certainly not always. And we never prepare ourselves for the times when they aren’t. We never focus on the ability to endure pain successfully. The most important skill to have in order to successfully endure pain that must be endured (that which is unavoidable and cannot be easily cured, e.g. chronic pain) is simply an understanding that pain is a normal part of life as we know it. It’s not something that must incapacitate us.

We’re raised with the belief that if you are in pain, you stop and see to the pain. And of course, there’s wisdom in that in most circumstances. I’m not suggesting some “play through the pain” macho mentality. If you have an injury, you stop and see to that before you worsen the problem. If you have a sharp pain in your chest, you see to that because it could be a warning sign. Those are “stop everything” situations. But if you have chronic pain, you don’t have to stop living until the pain relents. In fact, you can’t or your life is over. So how do you carry on?  A few years ago, my friend Rhona reminded me of the wise words of a visiting speaker to our congregation. These words have become a motto for me: “Bring it with you.”  In speaking about those of us who struggled with chronic health problems, the speaker said to consider whether staying home would do anything to make the problem better. Obviously, if one has something contagious or symptoms that may be worsened by activity, that’s different. But, he said, “Do you have a headache? Bring it with you! Does your back hurt? Will sitting in a chair here make it worse than sitting in a chair at home? Bring it with you.” If whatever you would like to do will not make you worse, then it comes down to a simple question: would you rather be sitting at home in pain, or out living your life in pain?  I’m not suggesting this is a way to “overcome” chronic pain, or that people like me can just “toughen up” and learn to ignore the pain. We are still limited. Chronic pain is a recognized disability under the law when it interferes with activities of daily living, as it should be. But when you start to “bring it with you,” you learn to put the pain to the back of your mind. You are able to put your focus elsewhere, because you’ve gotten past the idea that everything has to stop until the pain is relieved. That may not allow you to do everything you want to do, depending on how disabling your pain is, but it does allow you to do more, to enjoy more, to live more.

That’s not to say that it’s easy. Sometimes, the pain can be too much, and you know you genuinely won’t be able to function appropriately for whatever situation you’re headed into. Some days, instead of bringing it with me, it keeps me home. But I never give pain the inflated importance of believing my life has to stop until that pain can be cured, nor that my life is over because it can’t be cured. I refuse to give it that much psychological weight. On the contrary, I let the pain remind me that I am alive, I am here, and I am the person I am with our without it. I keep it in context

[selfindulgenttiger]

where memory remains

I will rest your soul

where the red hibiscus grows

as big as your heart

as big as your hands

I will rest your soul

where the alligator roams

might restrained to gentleness

its baby on its back

From dust to dusty road

scrub palm swaying

thistle and pickerel abuzz

with fleeting life

I will rest your soul

Where the hidden fossils lie

No longer to be found

Ever to remain

I will rest your soul

Through porous limestone sink

to hidden bluest waters

where memory is safe

where memory remains

[selfindulgenttiger]

The Vacation That Wasn’t

“How was your vacation?” The question is innocent, but unexpectedly, it stings. I smile and tell the truth: it was good. But I don’t mention that there’s a sharp sadness that comes with reflecting on the time. I was away from work for a week and I did leave town, but I guess maybe I wouldn’t exactly say I took a vacation. I took a week off because I wanted to spend time with my mother as we marked the first anniversary of my father’s death, and to carry half his ashes to my sister to be scattered in the city where Mom and Dad met.  And the time off was good. It was genuinely good. My mom is great company, and I enjoyed spending time with her and having adventures together. We went to parks, museums, shops, visited relatives. We went places we’d been planning to go for a long time, whenever I could manage to actually take some time off. Mom indulged me thoroughly, to the point of taking her mobility scooter out on a muddy, rutted trail in the cold and damp so I could fulfill a long-held dream. (Seriously... Best. Mom. Ever.)

Being in their college town clearly brought back memories for Mom, so I learned a lot about the early days of my parents relationship, and the adventures they had together. And passing off half Dad’s ashes for my sister and the kids to scatter did feel like letting go of a weight I’d been carrying. But for all the positives, in retrospect it feels somewhat like a cover story I told myself to deal with the real purpose of the time -- a step toward closure. I’m surprised by that -- I fooled myself well, I guess -- but I think in the end, I’ll remember the good times and get past the sadness.

[selfindulgenttiger]

The Fall

Dad is on our minds, more than usual, because of the date. November 1, his birthday. Family legend has it that he should have been born on October 31, but the doctor wouldn’t let Grandma push until the clock ticked over to All Saints Day.

Mom told me she had a dream the other night. In her dream, Dad had gone away for a three month vacation. He returned home and they went grocery shopping together. “He bought a lot of veggies,” she told me, with a bittersweet smile.

I wish I could dream about him. Although I normally hate dreaming, just to have that momentary belief that I had him again, it would be worth it. I believe that he ‘sleeps,’ unconsciously awaiting the resurrection, and I’ll get to have that experience in the waking world. But the temporary experience in my subconscious would be a comfort. The Fall... When life is seemingly stripped away, but it returns.

So many of my friends are dealing with loss right now. They have a hard season ahead. My heart goes out to them. My arms are open.

[selfindulgenttiger]

Things I Do to Relieve Stress

Over the years, I've developed some funny little habits to relieve stress. When I was young, I would hug my brother and insist he was my teddy bear. This clearly drove John crazy, so I developed new techniques. I'd save burnt-out lightbulbs, put them in a bag, and violently smash them. I'd walk alone at night. A therapist told me to "go to my happy place" with my sense of touch since I can't visualize, so my happy place was on the floor at a stranger's D&D game, because the carpet was soft, the air was cold, and the sun was warming me through the window. But as you grow older and experience more extremes in the stress department, it's sometimes baffling the things you find yourself doing: singing Sesame Street Songs in an MRI machine, sitting in your office paddling an imaginary kayak, curling up in bed and watching an entire series of a show you've already seen 42 times, getting your hair cut short (when you don't even like your hair short). Excuse me while I go hug my husband like a teddy bear and watch M*A*S*H. I'm trying to grow my hair out.

[selfindulgenttiger]

Rest.

Funny word, rest. It can mean, "to pause", "to sleep", or "the remainder." Today, I suppose it meant all three at once. We laid Liz to rest today. Her ashes were buried next to our grandfather, at Forest Lawn. (While we are discussing linguistic oddities, it never occurred to me before that "Forest Lawn" is an oxymoron.) I wish it gave me any sense of resolution. Instead, it reinforced how alienated and strange I am with my family. Except for my mother, I couldn't honestly say I knew, or was known to, anyone. (Thank God for my mother. Thank God.) I mean, these are some of my nearest relations and maybe I'm wrong, but I'm not sure one of them could tell you my favorite TV show, or order my beverage in a restaurant. The funny thing is, of all of my family, Liz was the one person I really knew. I knew what music she listened to, what books she read, what artists she loved, what she collected, what she coveted, her idiosyncrasies, who her friends were. But more importantly, I knew what she cared about, her fears, the hopes that she tried not to cling to, the reasons she was almost superstitious about expecting the worst, the weaknesses she didn't let many people see. She was honest with me. Not perfectly, certainly. I'm sure there were sides to her I never saw. I couldn't claim to know her as well as Robert, or Matt, or Lisa. It's just funny, while we are discussing linguistic oddities, that when the person in my family I knew best uttered the words, "You don't know me," they somehow managed to be true. I don't want it to be this way. When I ask, "How are you?" the question is not meant to be that polite code that means "Please don't tell me how you really are." I want to hear about your day, about the coworker who drives you crazy, the dream that left you unsettled this morning, or the crazy thing your cat did. For the love of all that's holy, let yourself be known. (I always have. Just, frankly, almost no one ever asks the questions.)

[selfindulgenttiger]

The Somber Girls

Do you remember that picture of us? Somber faces and world-weary eyes above our little girl dresses, the sun giving the world a happy, golden hue. It’s never the discord between the setting and the expressions that I notice. It’s the odd twinge of pride in the similarity - two children with hidden sadness seeping out onto the film. I always wanted to be like you, to be close to you, and in that way I unknowingly achieved it.

The funny thing is, I think that photo was taken around the time I broke your clavicle. (Was it the left or the right? I can’t recall.) We were standing in the grassy field next to Grandma’s house - you, me, and Lisa. I wanted to play with you, but you’d had enough of the tag-along little cousin. “Go away, brat,” you said. In a sudden rage, I swung with all my might, an oversized stuffed frog in my hand. Who would have thought you could break bone with green polyester and cotton batting?  I was standing right in front of you, but the distance was so great. You were always pushing me away.

I think that’s why the Polly and Lolly incidents stuck with me. You know, I remember nothing else from the year I turned five. No recollections of kindergarten or birthdays, only that: you and my sister insisting you weren’t who I knew you to be, you and she were Polly and Lolly, and you didn’t know me at all. You didn’t know me, you insisted.

Thirty-odd years later, you told me I didn’t know you. And you never spoke to me again, except the two sentence email thanking me for my interest in reconciliation but telling me you didn’t have the energy to think about me. I do know you, so I understood.

_________________________________________

I have spent so much time trying to pinpoint the nature of our relationship. You’ve been my childhood idol, my friend, my nemesis, my mentor, my cause. That happens in families, doesn’t it? You grow up together and your feelings change over time. You might think that would stabilize with adulthood, but it doesn’t. Change is the only constant. But the most consistently reliable description of our relationship throughout our lives is this: I am your shadow. That really encapsulates it, I think. Fundamentally similar in the general outline, but unavoidably at different points in space. Sometimes your view of me is distorted, and sometimes, I disappear altogether from your view.

Why would I expect that to change in dying or death? But I suppose I did.

I suppose my Dad did too. A few weeks after your funeral, he thanked me for having been there. He said that up until that point, he’d been unable to grieve you, unable to feel anything toward you because he was so upset, watching the anguish it caused me not to be allowed to help and support you. But now the shadow hanging over his heart had cleared.

_________________________________________

There’s another photo. We were preparing for my sister Jenny’s bridal shower  - do you remember? Matching postures, matching smiles while we worked. That was one of the few days I really felt you could see me. I knew your discomfort and you knew mine.

Grandma would’ve been proud. All those years as her assistant hostesses for holiday meals - cleaning house, setting tables, snapping string beans, decorating cookies. If she could have seen us in that moment, taking charge of the scene like paramedics arriving at an accident, but with the genteel manner of Southern ladies hosting tea… There’s nothing better for a case of social anxiety than a cake server in your hand, is there?

You passed the gifts and I wrote the list for thank you cards. When it was over, we stacked used red Solo cups and tossed frosting-stained plates in a bag. Once everyone else was gone, I didn’t want to leave anymore.

We never came that close to existing in the same moment at the same time again until you started chemo. The first time, I mean.

_________________________________________

You have never done the whole ‘in earnest’ thing, which is why it took me so completely off guard when you thanked me, unironically. (I mean, you’d never said anything without at least a hint of irony in your entire life, to my knowledge.) I was changing lanes and involuntarily turned to study your face; I nearly hit the median, but I knew you were sincere.

Matt was in Germany on business. You had planned to go with him before you found the lump, but that seemed a distant past, a different world. Before “aggressive form” and “40% chance of survival at five years.” Things moved quickly after that. Within a relatively short time, your first surgery was done, chemo had begun, and you were ready for your second dose.

I had taken the day off work to play chauffeur and nanny in your husband’s absence. At the infusion center, you introduced me to Nurse Kay and chatted about concerts at the old Hollywood Sportatorium while they pumped hot pink goo into a port in your chest. You explained to me why it was so thick and such a blinding color, but I don’t remember now. You laughed at the nurses’ jokes and you made them laugh too. Surreal. It was surreal.

I could almost see the poison penetrate your cells. The laughter became less frequent, then any talking at all trailed away, and finally you just wanted to rest. When it was done, I wondered if you would make it through the parking lot. Nurse Kay told me to go pull the car up to the door. She walked you out, and you managed to make her laugh one last time for the day.

Being out of there revived you a bit and we talked on the way home. It was the toxin they would give you on the next visit that would make your hair fall out, you said. I asked how you felt about it and you shrugged, “It is just hair. I’m not going to be vain if it means my kids have a mother.” After a moment, you added, “You lose all of it, you know. I am a little freaked about the eyelashes.”

That was my secret for navigating conversation with you: “How do you feel about that?” When you told me you were getting married, when you told me you were pregnant, and in response to most every development in your life thereafter, those were the first words I would utter. I realized early on that what other people consider milestones often felt like millstones to you, at least until the terror subsided. You didn’t view the world through quite the same lens as others, and I couldn’t support you until I had a clear view of your picture.

Whether you recognized it as a pattern or not, you thanked me for it that day. “I am so tired of hearing how everyone else feels about what I am going through, or how I need to fight for their sake. And if one more person feels the need to have an emotional conversation about how much I mean to them, I’m going to lose it. Save it for the eulogy.”

I did.

_________________________________________

Ironically, considering that I don’t celebrate holidays anymore, my very favorite photo of us is Christmas photo from the year I was two. You, Lisa, and I are sitting on a mall Santa’s lap. You look like a porcelain doll – your hair in ringlets framing your face, framing your huge eyes. I am red-faced, disheveled, frozen in mid-scream and struggling against your hold on me. You’re doing your best to smile for the camera, while simultaneously trying to keep me from launching myself forward off Santa’s lap. Meanwhile, Lisa is poised, smiling brightly for the camera, doing just what was expected of her and doing it perfectly.

We laughed about it together a few years ago, but I feel like that photo captures an essential truth about us.  

All my strongest memories of you are around holidays and family occasions. I suppose it’s fitting that the final memories I have of you are your absence from them.

In June, you sent apologies that you couldn’t make it to Jodi’s baby shower. The cancer had returned.

In July, Lisa spent her birthday month helping you through chemo.

In August, you sent apologies that you couldn’t make it to Mom & Dad’s fiftieth anniversary, and that you wouldn’t make it to any more.

Two weeks later, you were gone.

_________________________________________

It was three years ago today that everything changed. It’s not that I’m keeping track. I know that because I read over the emails again today. I do that periodically, to reassure myself that it didn’t merit what came after, that the fault line between us ran deeper. I reread the emails, I re-check the statistics, I worry about what you might have said to other family members about me, whether you turned them against me. You would think it doesn’t matter anymore, but it does.

On the surface, the fight was meaningless. So it was surprising that it got so hostile - that I got so hostile. But I realized, the fight wasn’t about racial politics. Just like the fight before it wasn’t about veganism, and the one before that wasn’t about my parenting. The real issue was always something deeper. It was an echo all the way back to the day I broke your clavicle. (I think it was the left. Right above your heart.)

You didn’t see me. All I wanted – all I ever wanted – was for you to see me.

So that last time, I made myself impossible to miss. I refused to drop the subject, refused to let you blind yourself to how much you hurt me. I insisted that you open your eyes. But you only saw the worst in me.

And then you looked away.

_________________________________________

I wasn’t planning to speak at your funeral. Hell, I wasn’t even going to go to your funeral. I was still in my pajamas when the rest of the family left the house. Mom looked back at me on her way out the door and asked, “Are you sure?”

“I don’t know,” I said. “I don’t know.”

I had tried to map out the boundaries of our alienation. I wasn’t allowed to contact you, or be with you, but could I help your family? Could I provide food? Offer condolences? I’d yet to find a single inroad. Was I even welcome at your funeral?

But then I realized, it isn’t your choice anymore. The time of the dying is past. Having spent forty years of my life looking up to you entitles me to grieve your death. Being a part of our family entitles me to the same measure of comfort as anyone can take from our being together.

I made it just before the service began and sat down with my father and mother. I spoke to no one, and tried not to catch anyone’s eye. And I probably would have left without doing either of those things, had my sister not brought up Polly and Lolly.

It was an epiphany that brought me to my feet. “I’m the aforementioned little sister, Karen,” I told the mourners. “And I hated Polly and Lolly.”

The crowd laughed, which helped slow my breakdown a little, but that dam was ready to burst.

“I hated them, because I loved Liz and Lisa. All I wanted was to be with them.”

As I told them all the reasons you were my hero, all the reasons I admired and looked up to you, I caught each person’s eye. I never looked away.

[selfindulgenttiger]

A reality check-up

I have notifications set up for my online health record. Every time I get lab results, make an appointment, or my doctor adds information, I get an email.  Today, I got an email that my record had been updated and a new health condition had been added after my visit on Tuesday. New health condition? I was confused. We didn’t discuss anything that wasn’t already an ongoing issue. I opened up the record to look and there it was, the date of the visit and the new health condition.  4/5/16: Grieving What a stark reminder that grieving affects our physical and mental health.  We had talked at some length about my father - my doctor was his doctor too. We talked about her feelings, mine, my children’s, my mother’s. And of course, we did talk about the effect on my health: I’d gone off one of my medications, because combined with the added stress, it was causing me panic attacks; I’d gained 14 lbs in 2 months as a result, and my overall health had suffered. Still, somehow, I didn’t consider grieving as a condition that would be of continued concern to my doctor.  I realize now, having seen it from her point of view, that it is. I realize it affects me in ways that need to be monitored. I’m still isolating myself, still having occasional bouts of what I call ‘being a hedgehog’ (just wanting to curl up in a ball to block out the world, which usually manifests as curling up in my bed and wanting to cry). I’m still not taking care of myself as well as I should, often unable to plan ahead well enough to do so. But the beautiful thing about that - seeing grieving as a medical condition - is the realization that it’s treatable. Like any wound, you have to watch for infections and complications, and it will leave a scar... but it will heal. It will heal.

[selfindulgenttiger]

The Truest Test

If you want to really understand the values of a family, the character traits instilled in them, see how they treat one another when a family member dies. For the record, my family? The best people you will ever meet.