Contemplating My Navel (Personal Blog)

The Red-Stained Road to Remission

Becky SarwateLeave a comment

The Red Road to Remission

In public speeches, on this blog, and in daily life, I’ve spent two years talking about my struggles with pompholyx eczema, a little understood autoimmune disease. As a refresher, here are some basic facts about the mercurial condition, courtesy of DermNet:

“Pompholyx presents as recurrent crops of deep-seated blisters on the palms and soles. They cause intense itch and/or a burning sensation. The blisters peel off and the skin then appears red, dry and has painful fissures (cracks)….

Pompholyx is multifactorial. In many cases it appears to be related to sweating, as flares often occur during hot weather, humid conditions, or following emotional upset. Other contributing factors include:

  • Genetics
  • Contact with irritants such as water, detergents, solvents and friction
  • Association with contact allergy to nickel and other allergens
  • Inflammatory dermatophyte (tinea) infections
  • Adverse reaction to drugs, most often immunoglobulin therapy…

[Additional risks involve] secondary bacterial infection with Staphylococcus aureus and/or Streptococcus pyogenes…results in pain, swelling and pustules on the hands and feet.”

So yes, debilitating, painful and at times, humiliating. I’ve written about society’s tendency to treat another’s visible disfigurement as an acceptable conversation topic. Strangers ask rude, invasive questions – like “What happened to you? Did you get burned?” – that they wouldn’t dream of posing to someone in a wheelchair, for example. And very rarely was I in possession of answers.

The condition typically onsets during young adulthood. I was 34 years old – not a geezer, but past the blush of youth. There’s no pompholyx family history. I’m allergic to nickel as well as a number of medications. But that’s always been so, and reactions stop at vomiting and temporary hives. Also? My case exploded near the Thanksgiving holidays. I live in Chicago. So much for the hot, humid theory.

Emotional upset? That I can believe. When the initial outbreak occurred I was living in a studio apartment falling down around me, ending an 18-month relationship with a psychologically abusive alcoholic, the plaintiff in a lawsuit (ultimately resolved in my favor) and between jobs. I was a bit stressed, but for better or worse, my harrowing upbringing instilled excellent coping skills. Why now if not then? I’ll never know for sure what caused my autoimmune system to shift into hyper revolt.

Over 18 months ago, I wrote about being one of the lucky ones. Pompholyx has no known cure, and most patients endure interminable alternation between steroid therapy (which temporarily subdues the swelling and growth) and escalation. It’s miserable. I used to dream of happily cutting off fingers, a macabre but welcome relief. I’d often awake in tears when I realized all ten burning digits were still in place. Chronic pain is the enemy of rational thought.

But in one of those right place, right time, great mysteries of life, raw, organic beet juice presented itself as a solution when my medical team had just about exhausted available treatment options. Had I not discovered that disgusting, beautiful, natural, thick red elixir, I’d be on disability right now rather than climbing the corporate ladder, taking on new writing and leadership challenges, or preparing to teach my first collegiate course in the spring. I’d never have traveled to Alaska or fallen in love with Bob and our dogs. 20-30 ounces a shot, 5-7 days a week, and except for the part where every fluid emanating from my body was crimson tinged, I went on as I once was.

Beet juice was a part of life, was life itself. And then all of the sudden, toward the end of October, another miracle: the pompholyx went into remission. I’ve enjoyed nearly eight symptom, juice-free weeks and counting. In preparation for writing this post, I looked up the technical definition of that word: remission. These are the three explications offered by Google:

“1. the cancellation of a debt, charge, or penalty.

2. a diminution of the seriousness or intensity of disease or pain; a temporary recover

3. forgiveness of sins.”

Through sheer luck, I’m not in financial distress. And as an atheist, I don’t believe powers higher than myself and the needs of the global community are required to guide my moral code. Guilt and I are old, longtime friends. Yet when I look at the three varying definitions of “remission,” I relate to them all under present circumstances.

In the throes of acute physical suffering, it was easy (and romantic) to wonder if the bad juju I know I’ve put into the universe yielded deserved pain. I don’t need a god’s help to see that almost everything is connected. Somehow I’d asked for this. But if so, to whom could I plead for relief and absolution? It was too, chronically late.

I don’t know what led to this pause in physical torment any more than I can ascertain what led to it in the first place. Has existential debt been forgiven, or is it (a far more likely scenario) that my human body, with all its mysterious quirks, has finally caught up to the happiness, mental health and peace I experience through better life choices?

Remission. Rumination. Resolve. So many “R” words, so little certainty. Gray areas used to drive me batty. Now I can just be grateful for the calm, taking comfort in the knowledge that if symptoms return, there are beets.

The Thanksgiving Revolutionary

Becky SarwateLeave a comment

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Thanksgiving 2000

I’m a recent college graduate with my first corporate job – one that pays a living wage and provides health insurance. I have an apartment in the Uptown neighborhood of Chicago that I share with my sister, baby niece and a friend of ours. Adult life is beginning. I am independent.

Jenny is visiting an out-of-town pal for the holiday, taking KK with her. Pete has gone to his parents’ place in Baton Rouge, Louisiana. My sister and I have begun the process of estranging ourselves from our progenitors, and since my mother had it repossessed a year earlier, I no longer own a car to travel to extended family. So I spend Thanksgiving drinking cheap white wine, watching movies and taking naps.

Oh the pathetic, romantic misery of it all! Actually, not so much. At this stage of life, a break from society and the anguish, regret and pain that were regular side dishes on the childhood holiday plate is more than ok. I no longer have to do what is expected. I have my own job and place to live and can get soused while eating frozen food if I want. In almost every way possible, it’s a delicious experience. Jean-Paul Sartre nailed it in No Exit. Hell is other people, man.

I ignore the pangs of loneliness and isolation that accompany my solitary, holiday binge. I am breaking new ground and it feels somehow bold, radical to refuse the traditional mass consumerist, Hallmark-dictated rules. I’m 22. I am revolutionary. I can drink away the deeply rooted sense of rejection that gnaws at the corner of my private party.

Thanksgiving 2001 – 2014

When I reflect upon Thanksgiving 2000, I’m reminded of that scene from Say Anything after Diane Court breaks up with Lloyd Dobler. He’s hanging out in a convenience store parking lot with some slackers from school on a Saturday night, pained and desperate enough to solicit advice from almost any source. When it finally hits Lloyd that the drinking dudes don’t know anything more about love than he, the gang’s representative defensively declares that they are alone, “By choice.” But you can hear the dangling question mark, and can certainly feel the ambivalence. It’s funny, awkward and pitiful – and the scene serves as an accessible sketch of my own cognitive dissonance.

I’m still looking for my way. At times I’m downright disoriented. I make a lot of bad choices. Many of them stem from a self-imposed, internalized tension between doing things “right” by the standards of society, and making decisions that feel authentic and true for me.

Part of the problem – a huge fucking chunk – is that I’m not sure who I am. Perhaps it’s more accurate to say I’m not sure I have the courage to be who I am – an oversharing writer who works out her issues in public, an American who’s not sure she wants to be part of the ownership economy, a liberal, an overbearing but loving friend, sister and aunt, a crybaby, a stubborn, hardworking, ambitioned career woman who doesn’t want the responsibility of raising children. I want a family but my definition doesn’t fit the norm. As the title character says in the Toni Morrison novel, Sula, “I don’t want to make somebody else. I want to make myself.” I spent long, sad co-dependent years living for others. Now I want to read. I want to see the world. I want to buy a scooter. I want a passionate relationship with a smart, strong, funny, unusual man who can celebrate my idiosyncrasy.

I’ve butted heads with people who demand more convention, but the least accepting of all of this is I. I will do anything to try to make the shoehorn work. The results? Two divorces, some Sid and Nancy-style breakups, family arguments, financial, career direction and health struggles. I also pass many despondent, confused holidays.

In 2014, I focus on my job, friends, familial rifts and sanity with regular Al-Anon meetings, weekly personal therapy, writing, travel. I don’t date much. I spend a lot of time on my own and it starts to feel good. I guard it jealously. The Say Anything scene fades. I’m alone by choice. It forces me to be honest with myself, consider my inclinations and follow the ones that feel healthy – without regret. On Thanksgiving Eve I spend the night at my sister’s house, watch a movie and have a slumber party with my nieces. It’s exactly what I want.

Thanksgiving 2015

At any point during the last 15 years, if you’d asked me what I wanted to be, I probably would have directed you to Carrie Bradshaw and Sex in the City. A fabulous, beautiful, urban writer with interesting friends and places to go. Unlucky in love and of course I loathe high heels, but close enough.

I have the life that’s necessary, and it’s better than the Bradshaw fantasy. It’s perfect by no means, and the direction evolves, but I trust myself now. I make leaps and take calculated risks – not dictated by external forces (beyond the basic food, clothing, shelter drivers), but by my truth. A set of principles I can now accept don’t work for everybody. They don’t need to.

I had the most satisfying holiday of my 37-year life last week. It involved almost everyone I love from both sides of the family I share with that unusual man who buys a new plastic wine cup when I accidentally launch mine three floors into the neighbor’s yard. He finishes my text messages when I’m too shaky with emotion, takes care of me when I’m sick and paid the highest compliment in likening my conversation to “Oscar Wilde at a cocktail party.”

Bob only raises his voice during sporting events or while stuck in traffic, and he tells the lamest jokes. He has this routine at the grocery store where every time we walk down the condiment aisle, he offers me an off-brand jar of some Miracle Whip-like substance. He enjoys watching my involuntary gag response. Sometimes when I’ve ignored a pun, he’ll force me to look at him while he repeats it. Then he cracks himself up anew. We have three pets, no kids and can go for long, comfortable stretches of time saying nothing while cuddling or holding hands. Bob cooks. I eat and pay for the cleaning service. I can’t tell you how well it all works.

We did the warm family gatherings this Thanksgiving. Then we retreated to a virtually-abandoned Michigan vacation spot for three days of wine, good food, wood burning fires and outdoor hot tub relaxation. A healthy, perfect for me mix of community and solitude. Bob and our dogs were there of course, but they’re extension of me rather than a situation to make work. I’m quiet and content inside. And that’s a revolution.

The Incidental Writer Takes on Hate – And Goes Viral

Becky Sarwate2 Comments

Max and Jen

Last Monday night I sat dejectedly in front of my laptop, tears streaming. Many people had been killed, injured and assaulted in recent days. Others had felt the sting of cruel, frightening rhetoric. My little sister was hurt. I can’t see my sister in pain. I’ve endured many challenges and am certain more lie ahead. I can grit my teeth and bear when I’m being laid bare. Jenny’s wounds are a different experience. She’s my woobie.

The Paris attacks perpetrated by ISIS caused so much shock, grief and misery – as well as unfortunately, a virulent strain of Islamophobic political and social media discourse. For reasons she’s eloquently explained herself, the casual ease with which some are discussing closing our borders to Islamic immigrants, or worse, forcing Muslim citizens to register, is a sickening blow. One that hits close to the home Jenny shares with her Muslim-American husband Max and their two girls. As an older sister accustomed to doing whatever it takes to make my girl feel safer, I felt so useless. A single threat I can use my body to block. A vast and often nameless field of online hate? I’m a female web writer. I know how overpowering that crowd can be.

Jenny sent me a text and told me she was ready to take a digital break until the post-Paris hysteria receded. I understood. A short while later, she had a surprising change of heart:

“I feel like I want to write something. If I do, can I run it on your site?”

That “something,” Love, Hate and Islamophobia, which I am proud to have edited, has (absolutely no hyperbole here) turned into a sensation. Thousands of reads and almost 1,000 Facebook shares from this humble website. Rerun on People’s World, Nikki Nigl’s #WordsByWomenWednesday feature, supported by friends and strangers alike who’ve offered lovely words of support to Jenny and her family. She felt defeated, like the oppression of hate and intolerance was more than any one person could push through. But then she spoke. She was brave enough to disagree. And it’s a story that’s connected with people across the globe.

Once again, there’s no overstatement involved with that declaration. In the wee hours of Monday morning, Dawn, Pakistan’s #1 English-language website, ran Jenny’s essay – giving her message of love and compassion a wider audience than I think either of us dared imagine. No matter how worthy Jenny’s voice, how strong her prose, and regardless of having written for all the right reasons, that’s not always enough for the soft protest. There’s just so much damned din. But this quiet, firm revolt is being heard, read, shared, discussed. There’s a hunger to get away from the blanket canvassing of our friends and neighbors.

Somehow, even after all this, Jenny doesn’t believe she’s a writer. I told her a writer, quite simply, is one who writes. If one is read, by tens of thousands spanning at least three continents of which we’re aware (G’day Australia!), offered a regular opportunity to share a viewpoint, well I can think of a few scribes (cough) who consider that rather qualified. My pride and love only grow with this adorable, genuine humility.

We’re getting to her. My sister yearns to do important work. She told me so five days before Paris presented a terrible, urgent need for perspective. I can think of few labors more necessary than what she’s started – placing a relatable stamp on the regular Muslim family. My brother-in-law cooks mostaccioli while yelling at the Chicago Bears on television. It doesn’t get much more American than that. Max’s otherwise smiling, kind face is the one of Islam.

I’m starting to think Jenny’s a closeted poet as well. When she sent me some notes for this post, she asked me to try to convey “how a seed sprouted into a giant tree.” A kernel of exhausted disgust with hatefulness, the underbelly of humanity, blossomed into something lush and healthy – for her and in an impactful way, for community dialogue.

It’s been a full week since I cried those bitter tears of powerlessness in front of the computer. Every one who’s since spoken to me about Jenny’s forway into activism has been treated to waterworks. Only now the tears stem from another kind of pain – a pride and awe at this person you love that injects helium into the heart. You’re light, yet feel as though you’ll burst. How is it possible to sustain so much warmth and joy in someone who swims in your gene pool?

With any luck, I’m going to have to learn to cope with the sensation.

Love, Hate and Islamophobia

Becky Sarwate17 Comments

I’m exceedingly proud to introduce my first guest blogger since the launch of the website earlier this year – my eminently talented and thoughtful younger sister, Jennifer. I will not be posting this week because nothing I have to say is nearly as urgent, and this deserves our collective attention. Please read and share.

Max and Jenny

In 2001, I met a man at work who intrigued me. We began dating shortly after the tragic 9/11 terrorist attacks. In 2003, I married this man, and in 2007 we had our first child together – a beautiful little girl to join my older daughter from a previous marriage.

In 2016, we will celebrate our 13th wedding anniversary with our children at Disney World – our favorite place on earth. Max loves me more than seems justified, but he’s exactly the father my kids deserve, the kind of man I wish I’d been able to look up to as a child. Everyone he works, prays, plays or engages with loves and respects him. He’s one of those rare people who doesn’t seem to have any enemies. But there’s just one little thing. Max is a Muslim.

The sad fact is, despite the qualities listed above, and the other terrific nuances that make Max a better man than most, some people that don’t know him at all hate him because of his religious beliefs. Oh, and they hate my 8 year-old daughter too. Facebook taught me that yesterday. In fact, Facebook has been educating me about the inherent disgust for my family for years now. However after last Friday’s senseless tragedy in Paris, the rejection of my loved ones reached a fever pitch.

It was a former aunt by marriage who posted a “fact” sheet (which I have not yet vetted) that delivered the blow that led to this post. The data in the meme purported to reflect Japanese restrictions on Muslims in their country. Said aunt (who has, it must be owned, recognized her prejudicial error, removed the post and apologized) added the editorial comment, “And so should the US,” in reference to Japan’s alleged closed door policy to Islamic people.

It’s not like I haven’t experienced different forms of hate or racism by proxy over the course of my relationship with Max. Quite the contrary. I’ve had my luggage contents dumped on the floor for all to see in an airport in Omaha. You know, because I was traveling with a bearded brown man. A hateful employee at O’Hare, the world’s largest as well as one of the most diverse travel hubs, attempted to prevent my husband and I from flying on the same plane to our honeymoon destination.

More recently, I was waved through a security checkpoint at the 9/11 Memorial in New York City even though my bracelets were tripping the metal detectors. However my cousin by marriage, wearing a hijab, was harassed about a blue dolphin statue that I purchased for my daughter at the Museum of Natural History. My cousin had been kind enough to tote the item for me on her stroller, and her kindness turned into an ugly memory.

I’ve asked these questions a million times. Does every Christian (or even an atheist gun owner) pay the price every time a rogue member of the flock shoots up an abortion clinic? Did every white American male have to apologize for or denounce the Unabomber? How about Timothy McVeigh? Did we close the borders to white Protestants after the evils perpetrated by the Klu Klux Klan? The obvious answer to all of these queries is “No.” Why obvious? Because it’s absurd to expect every American or Christian to denounce the distorted beliefs of a crazy person in order to stave off personal suspicion. As a culture, we do not afford the Muslim community that same courtesy.

You know those people that spout racist speech but then take cover under dubious claims when caught? They’ll say “Oh, I have black friends” after making pointedly ignorant statements about African-American culture. This phenomenon exists in discussions about the Islamic faith too. When I’m frustrated and emboldened enough to call someone out for their hate speech, and this has happened a few times, some are very quick to tell me they have Muslim friends who are “good people.” All better then, right?

1) No. I don’t believe you have Muslim friends. Because if you did, they would tell you that your gross, painful generalizations are unfounded.

2) I don’t think a Muslim – or any religious/ethnic minority – would befriend you knowing your opinions.

3) The second you protest that you have a ____ friend and are not a prejudiced against ______s as a result, you have lost the argument.

Max is a man of seemingly limitless tolerance and patience. But I’m not. Those security disasters I mentioned? My husband waits for them to end with humility. He does what he’s told and asks me to remain quiet so we can get through it and not draw extra attention to ourselves. He accepts that additional layers of mistrust and scrutiny are his lot in life – that he has to deal with being unnecessarily harassed for the good of the country. I sit there incensed and mortified. He just endures. I’ve learned to internalize my anger because if Max is willing to undergo racial profiling so we can board our plane to Disney World, who am I to presume greater entitlement to respect? Who am I to disrupt the peace he so desperately wants? But instead of getting used to the repetition of these indignities, they fester inside.

This is the world my daughters will inherit, the youngest of whom is being proudly raised in the Islamic faith. That’s what hurts and scares me the most. My husband is a big boy who can take care of himself. He was an adult with excellent coping skills before, during and after the horrible events of 9/11 that changed our country. But my baby girl is sweet and innocent, thinks the best of everyone. I dread the day she realizes that some will reject her based on one part of who she is. How will she react the first time she’s on the receiving end of a racist remark or hate speech about the only religion she knows? How will I react? My nearest and dearest should start saving bail money.

I spent part of yesterday morning watching President Obama’s speech at the G20 Summit in Turkey. I mentally applauded a particular quote as it was uttered, but in light of this recent, personal emotional roller coaster it bears repeating:

I had a lot of disagreements with George W. Bush on policy, but I was very proud after 9/11 when he was adamant and clear about the fact that this is not a war on Islam. And the notion that some of those who have taken on leadership in his party would ignore all of that, that’s not who we are. On this, they should follow his example. It was the right one. It was the right impulse. It’s our better impulse. We don’t discriminate against people because of their faith. We don’t kill people because they’re different than us. That’s what separates us from them.”

For inquiries, please contact jennifer.ashrafi@yahoo.com 

Dogs & Cats, Living Together! Mass Hysteria!

Becky SarwateLeave a comment

Meko and Jude

This evening, during our regular constitutional with the dogs, Bob told me that Jude ate some random, discarded alley bread in the morning. Worse, it was the bleached white variety devoid of any nutrition or flavor. When they returned home, Jude made a beeline for the toilet in order to rinse his verboten snack down with some refreshing tank juice. An eight year-old, 65-pound Australian Shepherd/Rottweiler swarmed with affection, high quality food, medical care and fabulous designer dishes has the culinary inclinations of a starved Depression-era chain ganger. Bob and I imagined him a prisoner/bootlegger, using his white bread and john water to ferment jailhouse gin.

This is Jude.

In June, shortly after Bob and I began co-habitating, I came home to a household of three pets for one of the first times. Dino, my fluffy, four-pound, 16 year-old ball of kitty might, is renowned throughout the blogosphere. I’ve written about our relationship for some years. But life progresses unpredictably, and a woman never considered a dog person suddenly found herself eagerly learning the quirks and schedules of two new, very large babies. I met Bob one cold February night and that was it. My heart stretched to fit the exact dimensions of this motley crew.

I returned home that rainy June evening to Dino, Jude and our 10.5 year-old German Shepherd/Rottweiler mix, Meko. When Bob rescued her at age six, she had the longer name Kameko. Bob, ever the enemy of needless syllables, shortened the moniker. It fits. She’s a no-frills gal. I swear she even looks like a Meko.

Anyway Meko has been, as they say in the adoption world, “re-homed” twice. Bob is at least her third daddy. We’ll never know her complete history. But we’re certain that she’s very much afraid of storms. Not when she has the chance to run around in one in the yard, mind you. Fear of proximity would make entirely too much sense and dogs don’t operate on logic. Instead Meko cowers from tempests – but only when indoors. Actually no, cowers is absolutely the wrong word. More like she goes WWE on our garbage cans and rugs, tearing up the recyclable shopping bags with her considerable 70-pound fangs.

This is Meko.

So that June evening. It was raining rather intensely in the Chicago way, with lots of spring lightening and gusty wind. I walked home from the train after work as fast as I could, expecting to encounter one of two typical scenarios – a peed upon bath mat or golden showered doggie bed. Thankfully we have access to a large washing machine. But this was no rehearsed production. My adopted darling canines had much more in store for the new mom.

By workday because he is a grazer, tiny and both rescue dogs were ill-fed in their past lives (Bob adopted Jude at one, but the poor fella still has a strong aversion to old men bearing canes or umbrellas – sad and enduring), Dino is sequestered with his food, litter box, heating pad, kitty condo and water in our second bedroom. There’s a window facing East and the little bambino likes watching the sun rise.

One may access this room in two ways: a conventional door off a long hallway, or from a bathroom closet that hangs a sharp left into the back of the bedroom’s laundry space. No human being over the age of six can fit through the latter entrance, owing to the built-in (backless) shelves that straddle the width. But if one were to say, leave the bathroom closet door unlatched, there’s room enough for a burrowing duo of determined, troublemaking doggies.

On this stormy eve, as if ripped from an Edgar Allen Poe scene, I returned home to gruesome carnage. I entered through the kitchen and saw the red metal garbage can, slammed several feet distant into the front hall entrance – broken and twisted. Coffee grounds and stale beet juice remnants were smeared across three different rooms looking eerily like human waste and blood. Already horrified (by sight, smell and the knowledge that I’d be cleaning this mess) and unable to locate Jude and Meko, I ran toward the bathroom.

Sure enough, the closet door was open. I could see through it to the dramatically overturned laundry baskets that had been stacked against the french doors. Clean and dirty linens flung about the room in a tornado of chaos. Meko, the massacre’s ringleader, had burst through the blockade in a mad fit of rain distress, the sartorial fortress intended to add another layer between dog and cat food. Jude crept behind in her wake – the shameless scavenger. I’m not svelte enough to scrape through the passage, so I headed to the hallway to enter the second bedroom.

What greets me? The sight of two calm, satiated dogs leisurely relaxing on the floor, adjacent to a non-plussed feline covered in socks. Dino’s food (and water) of course long gone. I was furious. Dino looked at me with betrayed, accusing, hungry eyes (without the joy of the classic Eric Carmen tune).

But here’s where unmitigated gall surpassed credulity. Both pups had the nerve to look at me with innocent joy, I dare say relief, that someone they love came to the rescue. For as doggedly determined (pun intended) as they are to reach a goal, they’ve never figured out they need to retreat the way they invaded. Obedience school should teach the domestic harmony of covering crimes more intelligently.

Jude was so eager to run from a self-inflicted prison that he took off from his resting place like a shot, stepping on my bare right foot with untrimmed claws, cutting the big toe at the nailbed. Tons of delicate blood.

When Bob came home, I was in a fully outraged stir. Bandaged and 30 minutes into cleaning, straightening, and refreshing Dino’s food, I couldn’t wait to tell him what “his dogs” had done.

But as I started spinning my yarn (and you know? I do that), the body and spirit rejected righteous indignation. I reached the part of the story where Jude sliced my toe in haste to leave the scene, complete lack of guilt about his mien. I started laughing so hard I had no option but to let go. In anarchy, there is often delicious, humorous harmony. Bob labeled Meko’s destructive, trash and laundry-scattering fit, not an emulation of the Incredible Hulk, but rather a special Meko-brand Smash.

We giggled. Bob devised fake apologies and voices for the dogs, issuing long-winded regrets about our cheap, parental taste in cat food. He also created a bit involving an affronted Dino, shaking an elderly paw at the damned kids (middle-aged dogs) on his lawn. Then we laughed some more, toasted the silliness and wondered how we entertained ourselves before we became a family of five. A happy, messy menagerie.