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family

Blog, family, healing, writing

Rememberance

Six years ago today, on a Friday morning full of promise, my wife, her best friend and I had just left our home en route for Florida to visit Maria and Cristina’s childhood friends. We were less than a mile from home when my cell phone rang. I was in the backseat with Lucy, our squatty white labrador-dachshund mix. It was my brother, George. I answered cheerily and cautious. I hadn’t been able to get in touch with my father or stepmother for two days before. I had called my brother in tears just 24 hours ago. I had a terrible feeling and I wanted to speak to our father. But he hadn’t heard from him either. And now my big brother was telling me in a croaking voice full of sorrow, “Dad’s dead.”

“No way,” I responded as my world went from sunny and light to gray and bleak in a matter of seconds. There was no possible way that my father, 61, healthy, loving and wonderful, could be gone. I choked on my own air that I was gasping in far too fast as my brother explained what he knew: that it appeared he’d had a heart attack while his wife, our stepmother, was at the barn checking on their horses. He’d died alone. That crushing new knowledge bent me over. George said he was headed to Athens, and we hung up, exchanging “I love yous” as we always did.

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What happened next was unbearable as I looked up at my wife and Cristina and said that my father had died and could we go back home. It was an absurd request, but I wasn’t thinking clearly, that of course my wife would be turning the car around and driving the half-mile back to our home and that Cristina would get on the phone to try to fly back to New York while I curled myself into a crumpled ball of hideous heartbreak on the cold tiles of the bathroom floor, unable to do anything but moan as salty tears soaked my cheeks, meeting a runny nose, connecting to the saliva pooling at my open mouth, jaw slack.

My wife came and checked on me but there was nothing she could do. My world had come crashing down and I was shaking from the shock and the grief.

In the week to come while we took time off from work and life to grieve at my father and stepmother’s home in a lake community outside of Athens, my brother and I bonded more than ever before. We were already incredibly close and now this – the loss of our shared hero – had left us clinging to one another in a state of devastation. Every year on Oct. 3 since my father’s death has been difficult as I remember the punch to my chest of the shocking loss. But every day without him has been far more challenging. Every time something big has occurred, like my wedding or the launch of my own magazine or the birth of my twin sons, I’ve wanted him there to celebrate with.

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My dad never missed an opportunity to tell me how proud he was of me, and it meant the world to me to have a parent like that. And when things have gotten rough, as they often do, like when my mother disowned me or I found out I had a life-threatening genetic heart disease or I watched my brother suffer in a hospital bed for 14 weeks before passing away from organ failure at age 36, or when my son was diagnosed with autism, it would have been soothing to have my dad to lean on. And then the lazy, normal days, when there’s nothing going on but an ambling walk on a dirt road, surrounded by eager, wet-nosed dogs and our precocious sons my dad never met, sunlight glinting through the green-leafed oak trees, my heart hurts for him, then, too. Sometimes I just want to call him up and say hi, and hear him say again in his sweet Long Island voice, “Hey, darlin’. I’ve been thinking so much about you and what you’ve been up to. Tell me everything.”

 

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family, healing

Waiting to Live: Fighting an Insurance Company for a Life-Saving Surgery

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I felt a lump in my throat as I padded down the stairs, having just kissed my darling twin toddlers goodnight. “I love you, Mommy,” my youngest called after me. “I love you, too, sweet boy. Get some rest,” I replied rather hoarsely, as my throat was swelling with a wail I couldn’t let out. “I’ll see you boys in the morning.” But would I live that long?

That is the question I lay awake with until the wee hours of the morning, unless I self-medicate with over-the-counter sleeping aids. And even then, I toss and turn, sitting upright to check my pulse on the heart rate monitor my wife insisted we purchase the day our insurance company decided it wasn’t going to cover my life- saving surgery.

On Jan. 2, I was diagnosed with Brugada syndrome, an incredibly rare genetic heart disease that sharply increases my chances of dropping dead from sudden cardiac arrest. That’s when your heart suddenly stops beating—not like a heart attack, where blood stops pumping to your heart and you’ve got some time for someone to bring you back to life. With cardiac arrest, someone must be performing CPR within mere seconds for you to have a remote chance to survive. That’s a lot of pressure for my twin 2- year-olds and my graphic designer wife to live under. And it’s quite a heavy wet blanket of fear for me to try to exist under. Though I’ve managed to face most days optimistically, I must admit that it’s been a struggle to keep that oft-seen smile throughout this ordeal.

Eleven months ago, I lost my good-natured 36-year-old brother, my only sibling, after a 15-week hospitalized battle with severe acute pancreatitis. I was by his side throughout it all, working with both the hospital and hospice to ensure he had the best care. I took on that role because four years prior to that, we lost my 61-year-old sweet father to either a heart attack or cardiac arrest. The men I loved most died far too young.

It would be far less stressful if I had a defibrillator implanted in my chest, which would shock my heart if I ever go into cardiac arrest. That’s the understood course of action for someone with Brugada syndrome: to surgically place an ICD (implantable cardioverter defibrillator) inside the chest, wiring the heart with tech-savvy skill to send electrical shocks of power to jolt my heart back into normal rhythm. I’ve heard it’s much like a horse kicking you in the chest. I’ll take that over death any day.

So why did Blue Cross Blue Shield of Georgia decide mere days before my scheduled surgery in late January that my ICD “is not medically necessary” and merely “investigational?” Because some mystery determiner of my fate didn’t care for my results on one of the tests I had done in December called an EP study. The procedure, which was performed by my electrophysiologist, a respected cardiologist specializing in the electrical workings of the heart, involves threading two catheters from the groin to the heart and watching it on multiple screens while simultaneously injecting medicine meant to provoke abnormal rhythms in the heart. In other parts of the world, ajmaline is used. It’s not legal in the United States, so procainamide is used instead.

The EP study is just one way to view the inner workings of a person’s heart, but it is not the deciding factor for a diagnosis of Brugada syndrome. The American Heart Association, the Oxford Journal and Dr. Brugada have all published studies indicating that there are numerous Brugada patients who do not have a positive reaction to the EP study, and there are cases of false negatives as well. A more indicative factor for Brugada syndome is the unmistakable pattern on the EKG, which I have without a doubt. It’s a cove shape, recognizable at once to electrophysiologists and apparent to anyone else once their attention has been drawn to it. The Brugada pattern appears on multiple EKGs of mine. It is my understanding that no one has this distinctive pattern on their EKGs if they don’t have Brugada.

The specific EKG readings of a Brugada patient were discovered in the early ’90s by Dr. Ramon Brugada, a cardiologist from Spain, during his and his brother’s investigation into a dizzying number of sudden, unexplained deaths. It was a joyous moment, I’m sure, when the brothers realized that there was a link, not only on the EKGs of patients with Brugada, but also in a lot of other scientific evidence that you can read about on brugada.org, such as sodium channel blockers and even a possible gene mutation.

Since Dr. Brugada’s a-ha moment, the arrhythmia specialists the whole world over have been learning about this rare disease. Currently, it’s believed that 1 in 10,000 people have it, it’s inherited from one parent, it usually occurs in men, it’s most often seen in Southeast Asia, people who die from it tend to be around 40 years old, and it often strikes in the early morning while the person is sleeping. I’ll turn 36 on March 1, two days after the year anniversary of my brother’s death. I don’t want to die young. I want to watch my children grow up; to teach them to love to read and, from them, to glean patience and how to better enjoy the small details; to hold hands with my wife and share a watery glance when our boys graduate high school and then college; to help my brother’s children never forget their dedicated father who left this earth too soon; and to soak up the sunshine, walk on crisp leaves and welcome the stomach cramps from laughing with my friends.

I have a responsibility to myself and to my family to strive for living. And I believed that my insurance company had a responsibility to honor the comprehensive plan my self-employed wife and I have been earnestly shelling out hundreds of dollars for on a monthly basis.

But what has happened instead has surprised me. After I read the rejection letter from BCBS, I called my doctor’s office. They were as surprised as I was, though they’d received the letter a day before I had, and had already attempted on numerous occasions to get in touch with BCBS to demand answers, a peer-to-peer review (in which my doctor would speak to a doctor employed by BCBS) or to file an appeal. During the last two weeks of January, voicemails for the insurance company were left by my doctor’s office and by me amidst perilously long holding times, during which an automatic recording would say over and over that the long wait times were due to the implementation of the Affordable Care Act. One time, the recording told me that because of the Affordable Care Act and the increased call volume, they knew they’d be unable to answer my call that day and then I heard a dial tone. It was only 1 p.m. I was enraged and quite scared of the implications. Finally, during the first week of February, the wheels have slowly begun to turn as my electrophysiologist (EP) was at last able to speak to the doctor who turned me down for my ICD. And yet, that wasn’t enough. Because surprisingly, the doctor who decided my fate is not qualified in electrophysiology, but instead is a general cardiologist. I don’t think I’m going out on a limb by thinking that this doctor likely does not know that much about my rare disease, and, of course, I’m reeling that he gets to decide whether or not I shall live based on something he isn’t informed about. My EP is now waiting for an electrophysiologist employed by Blue Cross Blue Shield to review my case.

Will I die waiting for a simple procedure that’s afforded to people with much more mild heart issues than mine because of this mysterious denial? If only my insurance company would listen to the extensive expertise of my personal doctor, the one who knows me better than anyone of the anonymous reviewers who aren’t immersed in specialty cases for rare life-threatening diseases like mine.

It does not seem to matter that I might have a familial history of sudden cardiac death or that I’ve had frequent bouts of dizziness and an unexplained galloping heartbeat. Why does an American company that doesn’t personally know me get to make money off of my hard-earned monthly premiums to what I thought was medical coverage in case of emergency while I sit here with my family wondering if this is my last breath? Sadly, I’m learning quickly that insurance isn’t guaranteed medical coverage at all, despite the slick speeches delivered by a president I still admire, but rather a sick and greedy conglomerate that takes and takes and takes, and sometimes doles out pennies for situations it cannot legally extricate itself from.

Since the denial, I’ve spent hours on the phone with attorneys and my doctor’s nurses and administrative team, as well as opening an investigation with the Insurance Commissioner of Georgia and filing my own personal appeal with Blue Cross Blue Shield of Georgia. My doctor and his staff at Piedmont Heart, an affiliate of Piedmont Hospital in Atlanta, Ga., continue to valiantly work to have my surgery authorized because my doctor believes—as six of his colleagues do—that I could drop dead at any moment because of this disease that may have also killed my father. But BCBS claims that, because of the Affordable Care Act, under which no American can ever be denied insurance, it cannot help me survive this deadly disease in a timely manner. And so I continue to wait in fear for the chance to live.

This article was first published on equallywed.com, and subsequently on Huffington Post and CNN.com.

featured, healing, recovery

Thanksgiving through the years: an attempt at gratitude after a loss

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Every year, Thanksgiving gets a little sadder for me. All holidays do. I was born into a small family—a mother who is an only child, a father whose only sibling lives in another state, and one brother. Growing up in Athens, Ga., was a lesson in Spartan familial ties and my brother—older by 18 months—and I were fiercely close (sometimes we fought like angry rams but there was nothing we wouldn’t do for each other).

20131128-121708.jpg George and I became even closer after our parents divorced when I was 8, but there was so much we didn’t know how to talk to each other about: my mother’s increased nightly consumption of glass jugs of Carlo Rossi merlot and incessant sucking on menthol cigarettes; her live-in boyfriend freshly sprung from the county jail who filled our apartment with billowing clouds of marijuana smoke; the Playboy my dad awkwardly bought for my 10-year-old brother at the airport on our first Christmas trip without all four of us together (OK, maybe that was just awkward for me); the sexual assault I endured from a family friend; the chronic gang rapes I survived in high school (which started on Thanksgiving night, Nov. 28, in 1992 and ended in December 1993); and the strain of going back and forth between two parents’ houses, knowing somewhere deep down that we were loved, but the parental watchtower we desperately needed was sorely absent.

During this tumultuous period, George and I clung more to our friends than we did to each other, growing further apart after high school when I came out as a lesbian (he had married a devout Billy Graham follower and his slight societal discomfort with homosexuality leapt into a new dimension of hate when fueled by his then-pregnant wife’s disdain for me bringing my girlfriend around their expected child).

But we reunited, George and me. I wrote him a letter after a year of not speaking telling him that I missed him terribly. And so he called me. And that was it. We’ve been thick as thieves ever since. It really helped that he finally got a divorce. He called me a week before Thanksgiving in 2004 to tell me he and his wife were splitting up—their two children would stay with her and he had to move out over the holiday.

I trucked on down to Florida where he was living, and we spent Thanksgiving moving what little he was allowed to take from their condo into his new apartment. Then we went to Denny’s, one of the few eating establishments open to a couple of college-aged kids in soccer shorts and T-shirts, and had our Thanksgiving dinner—a cheese-and-veggie omelet for me, and Moons Over My Hammy for him.

George’s life was maddeningly heartbreaking after the split. His wife moved the children to Georgia, and he drove the 6-hour trip every other weekend to be with them. But he was a dedicated father and didn’t miss a legally afforded opportunity to see his son and daughter. We spent most of our Thanksgivings together when he was in town, especially with the children. Our grandmother gathered us up at a French restaurant outside of Atlanta to spend the day together, but in the blurry midst of laughter and turkey, there was always a layer of regret and pain, whether it was because we were choosing to be with my mom’s side of the family and not my dad’s, or because my mom couldn’t go too long without saying something wildly inappropriate, or because we knew George was going to have to return his children in just a few short hours. There was always something unsavory under the surface that no one quite knew how to handle, but we stuck together because what other choice is there than to cling to the family you have, no matter how wacky?

We were going about this turn-style life with pleasantries mixed with oddness when out of the blue, my father suffered a massive heart attack on Oct. 3, 2008. He was 61. My father was my biggest cheerleader, never had a harsh word to say about anyone, was loved by so many, took fairly good care of himself and poof, he was gone. George called me to tell me. My chest caved in where my heart once was whole. Broken and in disbelief, my fiancé Maria, drove me to my hometown, to my father and stepmother’s home. All I remember about that day after we arrived is crumbling into my brother’s arms when he stepped out of his cherry red SUV from his longer road trip. He held me so strongly against his chest, and I still feel his arms around me. It is my mental safe place.

The following month, Maria and I decided to put on Thanksgiving for several of our family members, including my brother and my stepmother, who has since become my true mother, a jewel of a human being. Despite having lost our dad almost two months prior, we came together from a place of love and the onset of peace at this Thanksgiving. As hard as it was for me to get through even one sentence without crying, I still found an immense sense of strength from our togetherness.

The following March, my mother withdrew further into her incomprehensible cycle of sheer meanness, and announced that she wasn’t coming to my wedding in June 2009. Lest you think it had anything to do with my sexuality, you’re wrong. That’s probably the thing she likes most about me: I’m different, which gives her more fodder for church gossip. And I’m pretty sure she had a crush on Maria. Anyway, that Thanksgiving, Maria and I were welcomed with open arms by her family, chowing down on a Southern feast, but my heart ached knowing that my mom didn’t want anything to do with me and the only one who might be able to make me feel better about it—to remind me that I was a wanted child—was my father, who I could only hope was somewhere better than this earth.

By the time Thanksgiving 2010 rolled around, I was a massive woman, waddling like a mother duck because I was carrying twin boys. My grandmother insisted Maria and I come to Thanksgiving at the French restaurant and see my mother. “Only if my stepmom can come too,” I responded. I positioned her between us at the table, and we made it through with only the occasional odd remark from my bio mom whom I hadn’t conversed with in more than a year and a half. My brother had gone to his new girlfriend’s family Thanksgiving, and I wished hard that he could be there to slice the palpable tension with some of his gut-busting humor.

By Thanksgiving 2011, my mother and I were working harder toward mending our relationship, and we again met at the French restaurant, where my stepfather, grandmother, Maria, George, his children, his girlfriend, Maria and our children all gathered at a large table and focused all our energy on the children while George and I whispered little jokes under our breath about our nutty family when we walked to the bountiful carving stations of duck and turkey (not to be confused with turducken). George and I could crack each other up with just a look, and his jokes lessened the burden on almost all that was wrong with my family.

He was so perfectly uncle-like with Maria’s and my sons. This was their first Thanksgiving, and they, especially baby B, had melted in George’s arms like butter on a hot sweet potato. Baby B looks just like George did as a toddler, and their bond was apparent not just to me, but to the entire family. I’ve always known that I wanted to marry a woman and have children with a woman, and I’ve known all along that our children would thrive with two moms and no father. But I believe very strongly in having a dependable and loving male figure in my children’s lives. Watching George with our boys on Thanksgiving Day reassured me that even though we didn’t have my dad around, we had George. And I remember the distinct feeling of comfort that George would be around as my sons became men, demonstrating how to be a successful and generous man, just as he was. A man we all loved to be around, a man that didn’t seem to have one enemy—even his ex-girlfriends all seem to flutter at the mere mention of his name.
But the universe had other plans for George.

Last Thanksgiving, my brother stayed home alone with what he thought was a horrible stomach flu. He sent me a cheerful text, not wanting me to worry. The morning after, he called an ambulance because he knew something was terribly wrong. A day later, he was put into a 9-week medicinally induced coma. He never came out of the hospital, and 14 weeks later after all those ups and downs, surgery after surgery, tears shed and a few rare smiles, my brave, sweet brother passed peacefully in the night.

It is heartbreakingly difficult this Thanksgiving, a holiday we always tried to spend together. But I am working hard on feeling gratitude in the midst of my grief 9 months after George’s passing.

So on this Thanksgiving, I am grateful for two beautiful, tender and silly boys I’m blessed to call mine, a crazy-smart wife who caters to almost all my crazy whims, a stepmother who has gracefully and lovingly stepped into the role of motherhood for me when mine has fully abandoned me after threatening to kill me the day George died, a few precious rock star friends who keep me sane and make me feel special, a loving aunt and uncle who have taken me under their wing, and my own life for I am truly thankful to just be alive. It’s a heavy-hearted way of expressing my gratitude, I know. But some years just aren’t lighthearted, glistening with candy-puffed rainbows. But I hope and pray that 2014 is that way–for all of us still lucky to be here. Happy Thanksgiving, my friends.

Atlanta

@Cavalia Tickets On Sale Up To 50 Percent Off

Odysseo, the mesmerizing, unforgettable and magical equestrian celebration of the senses, will be staying in town one more week: until Jan. 22.

As a post-holiday gift to the city, ticket prices have dropped up to 50 percent if you buy this week for any Atlanta show. Purchase your tickets and get more information at cavalia.net.

Also, just for today, Tuesday, Jan. 10, Cavalia is offering a free complimentary tour of the stables when purchasing tickets at The Big Top today between 3 and 7 p.m.