Monday, May 10, 2010

The Birds

Several weeks ago, my homebound son, Peter noticed that a bird nest had been constructed in the middle of the Christmas Cactus out on the front porch. In it, were six perfect blue robin's eggs on top of which sat a puffed up robin day after day. We knew not to touch and so reverent were we, that we never even got close enough to take photos. Once before, the twins had touched a nest to which the mama never returned. Those babies hatched and we tried to syringe feed them to keep them alive, but their imminent death was trauma for us, so we were not going down that path again!

It has been the most perfect Spring event to observe and track. Each day the mama bird sat, patient and proud and waited. She never went to childbirth classes, no trips to Babies R Us were required, nor did she register for any baby gifts in preparation for the births. She would fly away for periods of time and curiously the dad would perch nearby and squawk for her to return to her full time job. It seemed she just needed to spread her wings a bit and have a break from the nesting. She had made a most beautiful and perfect home, but even from the best of abodes, we all need a break sometimes.

Days passed and each morning we checked the progress until finally lo' and behold when we weren't looking, six skinny, hairless chicks had emerged. We had missed the drama of the shells cracking and all, but nonetheless, we were thrilled to see this next phase. Now, began the hectic work of keeping these babies fed. Oh my! This mama flew back and forth all day long, retrieving worms, chewing them up, spitting them into continuously opened mouths. There seemed to never be any satiety in these chicks who wanted more, more, more. Isn't this the case with human babies too? As a lactation consultant, I find this to be the single most difficult concept to deliver to new moms -- "Babies are hungry, most of the time and feed continously."

We wished we had done some filming with some time lapsed recording, because each day was something new. One day the babies eyes opened, one day they grew feathers, one day they got more crowded in the nest. But, always, when mom when to get some food, dad flew nearby and yelled for her during her absence. Poor thing was always on the mission of getting those babies fed. I wondered why these birds were not designed as mammals where mom has all she needs to feed the babies. This seemed so much harder.

Ironically, the Christmas cactus, that housed the full house nest, began to bloom, totally out of season. First one, then several beautiful pink flowers burst open. It was as if to celebrate the coming of life, the yin and the yang, the loveliness of it all, heralded with pink blossoms in May that typically only bloom in December!

Six perfect baby birds snuggled together with mouths almost always open begging for food and when they weren't, they slept in a heap, kept warm by each other and by their very capable and proud mama. I think the most amazing part to me was the complete lack of intervention. No one rushed anything. Not the birth, not the infancy. There was no induction because she was overdue or supplementation because there wasn't enough milk. No one pressured the mama (maybe the dad a little!), no one said these babes "just weren't getting enough" or "gaining weight fast enough" or "growing enough feathers." No, on the contrary, all was well, just the way it was. It was such a delight for my chronically ill son to observe each day as he thrilled to the process and progress through the front window.

And then, oddly one day all but two birds were gone! One cute little round robin, perched on the top step, trying to spread his wings, falling over, trying again, falling again, over and over until poof -- he was gone. But, ah, those last two -- they stayed and stayed. In fact, they stayed a whole other day, waiting for mom to bring food, and cuddling up with each other still to snooze. What is it that makes some of us slower to fly than others? What is it that gives some more bravado, more faith in it all working out, than the rest of us? I always wonder this and now bore witness to that very phenomenon. But then, we looked away and those last two as well, had flown the coop. Left behind was a whole lot of bird poop, some shedded feathers, and one absolutely perfect bird's nest. Indeed the saying runs true, "We give our children two things, roots and wings."

Monday, May 3, 2010

We Didn't Know Today Would be the Last Day

On Tuesday, May 3, 1995, Shep and I woke up in the lovely, Southampton home of a friend of ours, Stephanie. She had invited us to use her weekend house while she was away and we were visiting. Nicholas was 13 and wanted to spend the day at a friend's house. Peter was 11 and had been stung by a bee on his leg, the day before and was still pretty sick from the allergic reaction he had had. Oliver was seven and up for whatever we planned. Gregory was two and had slept without me and without nursing through the night, for the first time, totally randomly and without coaxing. He had made his way through this strange house in the night to the bed his dad was sleeping in a room with the other boys and snuggled up beside him to sleep. I had a glorious and peaceful night where I actually got to sleep through and when I woke up, was shocked to find that Gregory was not next to me as he usually was. I felt good in the morning, but edgy as now it seemed, I wanted even more alone time. I wanted to lay on the couch and read The Southampton Press from cover to cover, undisturbed. Having lived in the Hamptons for 12 years, I still knew many of the people mentioned in the paper. Reading a paper and being the mother of 4 young boys is simply not possible.

We decided to go into town and walk Jobs Lane and then Main Street checking out changes in Lillywhite's toy store, the boutiques, the restaurants, and to drool over what we had left behind by moving to plain vanilla land in Raleigh, North Carolina, two years prior. In walking, we ran into a few familiar old friends and stopped to chat about old Little League teams, schools our kids had gone to and the like. We ate some lunch in The Driver's Seat restaurant which was always so enjoyable and then moved on. Peter's leg still hurt and so he wound up sitting in Gregory's stroller, while Gregory attempted to push him. It was a hilarious site that entertained many strollers in town that day.

We came back to Stephanie's house and made some spaghetti for dinner. I was irritable when Gregory kept climbing on the deck bench and leaning over. I was still lusting after alone time, or at least mommy-off-duty time and resented the interruptions. I kept pulling him back each time he leaned over and in retrospect, I only wish I had let him fall. He would have broken bones and that sounds horrific, I know, but read on and you will understand more. Gregory was covered with spaghetti sauce on his blue and white outfit so I changed him into a cute yellow sweatsuit and his multi colored shoes that matched. For reasons I will never understand, we chose to visit a woman I knew from La Leche League who had just given birth to her third child. This was not a close friend of mine, but rather a co-dependent, weak yet radical earth mama who was married to one of the most despicable men I ever met. George was at the time, County Legislator for Suffolk County and when he wasn't busy cheating on his wife, neglecting his children, or being a total egocentric asshole, he was making derogatory racist or anti-gay comments for those very populations he bragged about defending. Sleazy and repulsive is the only word I can still use to describe this unattractive being.

The truth of the matter is that we could have visited several other people on our first evening back in Southampton to see friends. My best friend, Joan wanted us to come, as did so many others. Who can ever say why we made the choice we did. It will haunt me forever. When we visited, the two older boys played with mine and went in and out of the house shooting basketballs. Anne and I sat admiring her baby, and as was typical for her she referred to astrological charts of each newborn as they came into the world. She had left George more than once and showed up crying, with kids in tow at my home for refuge. I always wondered why she chose our home, since we were not particularly close friends. I tried to figure out now, if that was over or if George was still up to his same slimey tricks. Her newborn nursed on and off as she and I sat in the living room. Shep was in the kitchen talking to Anne's visiting mom and then, George arrived bragging about the TV show he had just been interviewed for. Gregory wandered in at one point, noticed the baby nursing and so climbed into my lap and nursed as well. It was sweet and more poignant then I could ever know.

For some reason, we all wandered into the kitchen which was where the back door was. George who continued to be unbearably full of himself, showed off his parrot on his shoulder. He told us that it was not easy to determine whether the bird was male or female. "Just my luck," he said, "that I would end up with a 'faggot' parrot!" I remember feeling so confused that this man was such a complete fraud, deriding the very population he claimed to publicly defend. It is hard for me to look at parrots, still.

Minutes later, Shep asked me, "Where is Gregory?" I responded that he was following the boys in and out to the basketball hoop. "No, he responded, I don't see him." In that second the entire world changed for six of us and it would never return to how it was one second before. Gregory was indeed floating face down in his yellow sweatsuit, multi colored shoes, in the swimming pool. Shep and George grabbed him and pulled him out. The open gate (The Hamptons had very strict laws about this, but of course, George was completely above the law) had gained him entrance and what happened next, I will never know. I do know that there was running and screaming and sirens and chaos and me jumping up and down in the air in a maniacal, frantic, desperate fashion. I would flip from kneeling and begging God for help to leaping in the air over and over. There were hours in emergency rooms, helicopter airlifting, racing to a larger medical facility and sustained hysteria by us all. There were my kids coming and going, being brought, being removed, being calmed, being lied to, being supposedly -- protected. There was no way to protect, no way to calm.

I have written of all the details many times, so I will not repeat. But, in ten hours time, we watched a medical team desperately try to infuse life back into the lifeless body of my darling, chubby child. It crossed my mind that if they would let me nurse him, he would be okay. Truth was that when we pulled him out of that pool, he was already dead even though medical efforts made his heart beat again. We let him go forever at 6:00 am and stepped into the cesspool of our new lives, that would take us years to learn to navigate. If only we had known that the day before would have been the last day. We could have done things differently, I suppose.

Today is that day again, only it is now 15 years later. We have survived without my darling son and we have been given the blessing of two more sons, twins in fact who really are solely responsible for pulling us out of the black hole we lived in following Gregory's death. As you know, I live each day in search of "the normal day" always consciously pleading and praying that it is not the last one.

Wednesday, March 24, 2010

The Other Side of Midnight

Last Saturday, my colleague/friend and I drove to Charlotte, NC to attend a statewide La Leche League conference. I have officially been a LLL leader for over 22 years but have been inactive for the last five or so.



My initial experience with LLL was in San Antonio, Texas in 1980. I was pregnant with my first child and have no earthly idea why I was even remotely curious about breastfeeding. I had never seen anyone breastfeed and God knows my mother was completely horrified by any and all body parts, so this was not an idea mentioned in my growing up years. But, something brought me to that Couples meeting that night and I became more and more interested. When I gave birth to my first son in 1981, I began attending meetings and the rest became my history. Suffice to say, my connections to LLL changed my whole paradigm of thinking, taught me loving and tender child rearing along in a nurturing style. In the end, it became my career choice, as I have been a board certifield lactation consultant for the last 14 years. The women in the LLL groups I belonged to in New York and in North Carolina have also become my life long friends with an attachment, like no other.



So, when I got to this Charlotte conference -- I had that familiar feeling of connection that I miss so desperately. Being a lactation consultant in private practice is a lonely field. These were my friends, my cohorts and many of these women had been to hell and back with me when my two year old son died tragically in 1995. It felt so good to be amongst these women. As well, there is a sense of "normal" at a LLL event. These are happy mothers and content babies, many of whom have made mothering a profession. They practice attachment parenting snuggling their babies in slings who were born in a most natural style, use alternative vaccination schedules, and they think before they accept most things handed down to them in the health field. It is a lovely arena.



On Saturday morning, I cheerfully attended my first session which was on increasing breast milk supply. This is a subject that has no end, as it has become the holy grail of breastfeeding. When the session was over, I came out only to be met by the horror stricken, tearful faces of two old time leaders who I have known for years. They grabbed me by the arm and said they needed to tell me something. My heart sank below my knees, I was terrified -- was it my husband? one of my sons? Which one? What? What? Jan said, "Karen's 21 year old son killed himself on Thursday. I just got word." I was horror stricken in every possible way and began crying uncontrollably. That was it. I wanted only to go home and see my own sons to be sure they were okay. I wanted to hold Karen, an old time LLL leader and lactation consultant, and rock her, knowing that her life would never be the same. I wanted to lay in the streets and sob for the agony of losing a child and the inability to ever comprehend the ache. The compounded horror of suicide is I feel, the worst of the worst. He had a gun, we came to find out, all the more horrible, I suppose. I cried on and off all day long and finally got home late that night, kissing and hugging those who were home and burying myself under many covers.



The funeral was a Catholic mass on Tuesday. This is the thing for me. Many said they could not attend because it would be "too hard" or "too upsetting" or too something. I feel this way. I do not have that choice. I am a fellow human being, a fellow traveler, if you wish. I am your friend. You are descending into hell and I have the responsibility to show up and to bear witness. Isn't that the VERY LEAST I can do? I must steel myself and wade through the fire and the grit, but I must be there. It is torture for me to go to that place in my heart that still has an eternal flame or torch. But, I go anyway.



The mass was nice, with touching music, moving eulogies by a brother and a friend. The brother said two eloquent things that I have thought of many times since. One was that he felt that Jesus had to go through hell and so had his brother Ted. The other really got me. Ted was bipolar and apparently, he suffered terribly, unresolved by medication and/or treatment. His brother said, "It was often very difficult to live with Ted. But, in fact, it was much more difficult to live AS Ted." It is so telling, that when one shoots themselves with the purpose of ending it all, one almost always chooses to blow their brains out. The pain of life seems much greater than this painful, instant death, at that moment.



And then, the receiving line, where this poor derailed family, stands receiving hugs and "I'm so sorries" while they barely have the strength to breathe in and out. There simply are NO words. I bring water to the mother. I bring a chair. It doesn't matter. The dad mentions that it will be odd not getting emails from his son. Oh honey, that will be the least! I hug the mother, my colleague, and she says, "Oh those babies. We love them so." Yes, indeed. I think to myself that they have no idea how long and rocky the road ahead is. On the phone she said to me, "He's with Jesus. He is fine. I have my faith." Yes, but hey, Jesus' heart broke over this tragedy as well. This will do your for awhile, but not for long. The gnawing will come at 3 am and no loving arms of Jesus will take away the agony of loss. The other side of midnight awaits all surving parents with hell on earth.

Necco Wafers

Growing up in the projects in the East New York section of Brooklyn in the fifties and sixties, was a truly unique experience. I could go on and on about the socialist form of living that was really beneficial in so many ways. When you were assigned one of the three huge city projects to live in, placement was made according to your total family income level. Thus, you either lived in low, middle, or high income housing. My family of Irish and Hungarian descent, lived in Boulevard Houses because we were a middle income family. My Irish Catholic father was a parking meter collector at the time, working for the City of New York. My raving atheist Hungarian mother stayed at home and spent much time "on the bench" with the other moms. This was group therapy or at the very least a support group, long before those terms were the vernacular.

The families who lived in the projects and for that matter, most of East New York (ENY) were almost all Jewish. I was being raised Roman Catholic. I was in fact "the other." When there was a Jewish holiday, I would often be the only student in my class to come to school and I would delight in helping my teacher clean out closets, rearrange classrooms, etc. Oddly, all the teachers were Jewish too, but did not get the privilege of a day off. I was the "shiksa girl" or "goyim" and several parents of my friends, did not encourage my presence around their children. I did not realize this at first, but as I became a more conscious age, I often had this feeling that I was "dirty."

On Wednesdays at 2:00, I would leave school to head for St. Gabriel's Church, well over a mile away for what was called either "Religious Instruction" or "Released Time." Either way, I hated it and was embarrassed to leave. The walk was long and kind of scary and amongst the few other non-Jewish kids, I don't remember any others walking along to St. Gabriel's. I was alone. At the time, there was Hannah Shea, Patrick Manetta, Diane Grinage, Gino Dinolfo and a few others who were not Jewish, but they must have either been in another grade, or not been forced to attend this Wednesday ritual, so I never saw them.

I was always very intrigued and in awe of receiving communion. Part of me, was particularly confused because my Catholic dad never received along side of me as other families did. Years later I came to find out that this good, honest, faithful guy had a divorce in his past which rendered him excommunicated from such last suppers. I was angry about that for the rest of his life. Nevertheless, each week, I would go into that dark scary booth to confess my sins to the priest on Saturdays, say my penance, and receive communion on Sundays. Sister Martin Joseph (why the male names always?) said, "Never chew Jesus, let him melt in your mouth." One of my biggest fears became the dread that perhaps Jesus would get stuck in my teeth or palate and I would be damned forever, as I suppose, would He!

Growing up in the projects meant that you always had lots of friend so play with. No matter what the day or season, there was someone around to dress Ginny dolls with, to go sledding with, to set up a neighborhood carnival with, or to ride bikes and roller skate with. Great fun. When it was too cold or rainy to play outside, we would either meet in the hallways of the building or visit each others apartments to play. So an assortment of friends like Nadine, Susan, Audrey, Paula, and others would come to play. They were all Jewish, of course. I would take them into my room and say, "Okay, I am the priest. Kneel down." I have no idea why, but they would heed my commands. It is often like that with children -- someone becomes the director and others follow suit. I was in fact, often labeled as "bossy." Once they kneeled, I would have them fold their hands in prayer, and close their eyes. Then, I would carefully peel one Necco wafer out of my pack, demand that they stick out their tongues and place the wafer there. "DON"T CHEW!" I would command, "Let Jesus melt in your mouth. You cannot chew Jesus!"

Although they seemed obedient time and time again, when we played this game, it was in fact, upsetting enough to them, to cause them to report to their parents. Some of these parents were Holocaust survivors, but even those who were not, found this less than amusing. The parents would come banging on our apartment 4A door, report to my father what was happening and I would be told to stop at once. At the time, I couldn't really understand why, but I sure do now.

Wednesday, February 24, 2010

Often too late to find old friends....

Old friends mean a lot to me. Old acquaintances and relatives do too. Now with the advent of Facebook, it all becomes a reality. One can find just about anyone and if you can't find the one you are looking for, surely you can find another family member or a friend who can.

We lived in Texas some 28 years ago. Shep and I were just married and living in Manhattan and absolutely loving it....when, lo' and behold, his job with WR Grace required a transfer to Dallas, Texas. Being Ms. New York my entire life and working at that time as a manager in Macy's Cellar, I was horrified. Although we were newlyweds, we argued about this move passionately and watched the show, "Dallas" with renewed curiosity mixed with dread.

We flew to Dallas, and trying to duplicate Manhattan, I found the only high rise apartment building at the time, (in Turtle Creek) and put down a deposit to hold it till our arrival. I went to Joske's Department store and applied for a position as a buyer. Already on slippery terra ferme, the mud sunk deeper, when suddenly there was a shift in plans. The move would be changed from Dallas to San Antonio. This was it -- too much. I could never do it. But, Shep did have to relocate; there was no way to avoid it if he wanted to advance his career. And so, I gave in, had a cool Manhattan farewell party with the "Dallas" theme as background music and bid adieu to our upper east side apartment in The Claridge House.

To say I was a “poor re-locator” would be a gross understatement. As a hip New Yorker, born and bred in the Brooklyn housing projects, I relocated with such reluctance and skepticism, that my adjustment was destined to fail. The quirky thing I notice about so called "worldly wise New Yorkers", is that in actuality, they can be very provincial. There is something really odd about living in New York and the daily struggle for survival. The goal is to make it to work and back, through a gourmet dinner and wine, then, into your loft bed for the night, and when that is accomplished, you feel like a hero/survivor. There is the notion that the harder it is, the bigger the struggle, the better it must be! After all, good things don't come easy, so it stands to reason that New York MUST be the best, because it is the most difficult. I believed that with all my heart and never wanted to leave. Most New Yorkers don't. The truth is though, that there is life outside of New York and in fact, everyday life need NOT be a battle royale. It can be simplified and less stressful and still very worth living.

Back to the subject matter here. We did relocate to San Antonio, Texas into a garden apartment complex (there were no tall buildings!) ironically named 7600 Broadway! I worked for Dillard’s Department stores as the buyer for three departments in about a dozen stores in Texas, Arkansas and New Mexico. I was the gifts, lamps, and wall decor buyer. And my office was in a warehouse on Broadway with several other buyers. My boss was a genuine Texas merchandiser who chewed and spit tobacco, in between smoking Marlboros. He was kind, but I was horrified. He was short of breath and slightly impatient with my low comfort level with numbers, facts, and figures. I have never been a numbers girl and even in college as a merchandising major, I struggled with Open-to-buy formulas. Send me to the wholesale gift market and I was a gem. I could choose items, colors, styles that almost always sold. I had a true sense of what someone else would like to purchase, even when I hated the item. With a great flair for merchandising the item and creating desire for it, I was worth my salary, but for my number sense -- I should have been slaughtered.

Now, while I was busy learning to drink Dr. Pepper and purchase stone cactus displays and armadillo statues, Shep was working with Howard Publicover for WR Grace. WR Grace was busy spreading their retail and restaurant acquisitions at the time, and Handy Dan home stores was their big push. Handy Dan was the precursor to Home Depot in the southwest. I think Howard was slightly intimidating to Shep as was the corporate world he was now in. Making presentations to large groups of executives always seemed to rattle Shep, though he did well. Howard was perfect in his job though, and we soon became friends with Howard's family, who had relocated from Massachusetts. We all tried to learn Texas two step dances together, ate on the lovely River walk and shared our stories of missing the Northeast and our friends.

The Publicovers were the epitome of a large, happy family and we loved to spend time with them in their big house with four kids. Their twin daughters, Kym and Karyn were in high school by then, their son Mark was probably in elementary school as was their perky daughter, Lynda. I was pregnant with my first child and very excited to be so. Shep and I had traded up and bought our first house on Dove Flight in the northern part of town. San Antonio was still a very military area and this part of town was especially so, thus we fit in, even less. Being around the Publicover family through my pregnancy was so appropriate and when I had baby Nicholas they were quite helpful in getting us acclimated. Lynda was especially interested in this new baby and she spent time at our house helping me. I too, was very drawn to her sweetness, her zaniness and her open questions.

This family seemed to do most things, BIG. Their new house was so big and the windows might have been the biggest I had ever seen, with drapes that ran for two stories. The kitchen was big. The yard was big. This was Texas where most things are BIG. But biggest of all, was their camper which we loaded into one weekend, with baby Nicholas in my arms. I cannot remember if we had a destination or not, but it sure was fun riding around while Howard, also a big guy, drove this mammoth vehicle. Howard and Shep had purchased cowboy hats and boots at WR Grace's cowboy store, Shepler’s and wore them well. So, as I remember, it was a fun time, at a tender and impressionable phase of our lives.

After two years of non-stop comparisons to life in New York, Shep finally relented and we made plans to move back. I have always looked back on this decision as a mistake, because we were doing well, had a nice life and had made some good friends. Texas is a very family friendly place, the antithesis of where we were headed. But, this is how life goes and this is how maturation takes place, through making some poor, but hell driven decisions. So, back we went, only this time we moved out to Hampton Bays, Long Island and I shall write more about that another time.

We sent Christmas cards to the Publicovers for many years and then somehow, that ended, but I am not sure why. Baby Nicholas is now, 28 and married and his five brothers followed him into this family. I am a lactation consultant and will be attending a conference this summer in San Antonio, so all these years later, I became curious as to what and whom I will find and if anything will be vaguely familiar. Enter, Facebook -- the life changing channel of communication, perfect for someone like me who always likes to follow-up on lost friends. Through just a little bit of searching, I found the Publicover twins and then, Lynda! Oddly, coincidentally, synchronicity, who-knows-what, Howard Publicover had died the day before! Irony or ironies? The family was too busy with funeral plans to email back and forth which was completely understandable, yet so very sad to hear. I became even more curious about what had become of this family.

How uncanny this is? I, who thinks of death and its meanings, more often than is probably normal, runs smack into death. There are these grown-women-and-men-children who have lost their big daddy. Their mom, Virginia (who in her Facebook photo looks very much like a Texas country singer), has lost her husband of so many years. Lynda has posted two photos that haunt me in their loveliness. One is of her in hospital bed with her dying dad. The other, so striking, is of her holding his hand as he lay dying. She had been told many times that she had "man's hands" and she finally came to realize that her hands were her father's replicas. The wonders of genetics. And, she is so honored to have the facsimile of the hands of the man she loved so dearly. We are in touch and I am enjoying hearing about her grownup life. She says I was an inspiration to her in the way that I nurtured my first child. She went on to breastfeed each of her children, which to me, is the greatest honor of all. Surprisingly, I recollected my first year of mothering as clueless and so ungrounded. Who knew? Through the eyes of a 12 year old, comes glory and tribute unknown to oneself.

So, moral of story -- too little, too late. We will never see Howard Publicover, though we hope to visit with the rest of his family. I wish I could keep up with everyone who has ever crossed my path, but it seems that is not possible. I am ever curious as to the impact I may have had on them, and how they perceived me, at different times in my life.

My Friend Nancy

Last night at church my friend, Nancy shared a slide show of her recent "pilgrimage" to Iona, Scotland. Pilgrimage?? This means what? Journey? Retreat? Meditation? Hiking? What? I am not sure I know this word. But, there I saw the most incredible scenes of stone walls, abbeys, beaches, roads, flowers, and caves -- some of which were millions, yes, millions of years old. It was amazing to see, I tell you. And it was deeply awe inspiring and suddenly I wished I had been on just that pilgrimage! When Nancy was thrashed around in the wind on the end of an island on a rocky beach to the point where she could barely remain standing, the residents of the "community" said, "Oh, the wildness of God!" I love that! The wildness of God.....

And kudos to my friend, Nancy, who is one of the few friends I have come to know in this second half of my life who really wants to keep digging deeper and deeper. I have laid claim to that in so many relationships, where I keep wanting to know more, more, more about myself, about my soul and about why I am here. I believe in her own way, this is what Nancy does too and in her pilgrimages, that is so much more available as she stands thrashing about watching and feeling, the "wildness of God."

Monday, February 8, 2010

The Lyme Nightmare

I am still reeling today. I hate that expression because my bipolar/borderline personality mother used it when accusing me of hurting her, but here it is true... I AM reeling! Yesterday, Peter (the Lyme suffering son), and Oliver (the 21 yo activist who was home from school for Super Bowl), and I went to a Lyme support group that meets here in Raleigh. Not only is the meeting so poorly run, or shall I say "not run" that you could lose your mind, but it is positively depressing and hopeless. I don't know where to begin, except to say that the leader of the meeting does not lead and those few people who by sheer persistance, find the meeting (it is not advertised anywhere) are so depressed and so beaten, that the sense of complete hopelessness is awash over your entire being.

It is hard to describe the quagmire that is Chronic Lyme disease. It is a political, medical, and legal nightmare of the most extreme proportion. Medically it seems that there are few or no doctors willing to treat this controversial disease as there is no definitive protocol and the one commonly used remedy of long term antibiotics, is of great controversy in the medical arena and completely unacceptable by the insurance companies. So much so in fact, that one doctor formerly in North Carolina was sued for millions of dollars by Blue Cross and lost not only his practice but everything he owned. He has moved from NC to SC and now to DC but obviously offers no insurance reimbursement, so the out of pocket expense is out of reach for most of us. Other doctors have lost their licenses to practice through review by the Infectious Disease Society of America which is as riddled with conflict of interest as the tobacco industry and the infant formula lobby rolled into one! It is a frightening state of affairs when the members of that review board are in charge of our well being and health.

This of course also links into the political arena with attempted protest groups in legislative branches in local government and protests launched with little or no impact. The legal implications better known as CYA by most practitioners leave them unwilling to risk the witch hunt that awaits if they continue treating Lyme patients with long term antibiotic therapy, to the point where doctors seem to want to run for the hills when they are discovered to be Lyme-saavy or as the terminology goes, "Lyme Literate." If they are deeply moral, compassionate and really are doctors because they believe in human kind and truly want to help save lives, then this becomes a heck of a moral dilemma for them to wrestle with. Imagine, trying to decide between hanging onto your medical license and supporting your family and doing what you went to school to do, or losing it all while saving lives and health. Hippocratic oath anywhere???

So, the support group is hopeless really. I cannot sit at a table where no one is introduced, and there is one upmanship on who has had this disease longer or to a more severe degree. Then too, there are the really scary alternative treatment suggestions by some. I mean these sufferers are risking leukemia and the like by removing some of their blood and exposing it to infrared rays?! Or, using Bariatric oxygen treatments at levels potentially toxic to their brains. Two out of three, the leader of the group included shared that they would much rather have a diagnosis of cancer. This is hard, too hard. I hate my boy hearing this hopeless talk. I really hate it. I want us to start our own support group with maybe a guest appearance by someone who actually got cured and feels better. Imagine that? Or, maybe a pain specialist, or a mental health provider sympathetic to the ensuing depression. Surely, there has to be better support available then just sharing our darkest terminal thoughts.