On my feet are new sandals that I have lusted after for 38 years. I finally have them! They are not unusual in that you probably see them everywhere and have become a new yuppie/preppie standard of sorts. They are now called Jack Rogers, though when I first saw them in Southampton, they were called Jackie Rogers. Even then, they came in a few different colors, but now they come in dozens of cool color combos. I am not sure which color combo Jackie Kennedy chose, but she was indeed the one, who made these a fashion item.
In 1973, I sublet my apartment in Richmond Hill, Queens. It is hard to imagine now, who would have wanted to live there. It was in a two family home with an Irish immigrant family who owned it, living on the first floor. There was little or no privacy. I lived upstairs in a converted "illegal" one bedroom apartment with a kitchen that had been a bedroom. I shared a hallway bathroom with Alice Eggerton who was in her late 80's and chain-smoked Virginia Slims when she wasn't choking from coughing. Considering the fact that I was only 16 years old when I first left home, I suppose this was all that I needed. I was safe, peaceful and away from my Borderline personality mother. So, in the summer of 1973, I sublet this place to a friend I had worked with. I packed my bags and moved out to a one-room rental in Southampton, Long Island, overlooking Shinnecock Bay with Black eyed Susans in the driveway.
As soon as I got out to the Hamptons, I hit Jobs (pronounced with long “o” like in the bible!) Lane and Main Street checking each boutique for employment. When I got to the Tapemeasure Boutique at the end of Jobs Lane, I was hired by a vivacious blonde, named, Debbie Owen. I had a merchandising degree from The Fashion Institute of Technology and had worked as a designer, buyer, manager in various fashion industry positions so I was quite qualified for this position. But, I wanted to live in the Hamptons and was convinced I could live there year round, so this is where I would start.
Meeting Debbie Owen was life changing. She became a key figure and influence on my life with more largesse then I could ever have imagined. I was 23 years old and though I had lived a fuller life than most women that age, I was still a virgin and had not been in a steady relationship yet. Debbie became my role model in every way. She was married to Billy who was this adorable guy and she had a baby named Kyle. Her baby was also cute, but had a large hemangioma on his head, which caught one’s eye while cooing to him in his seat. I learned about hemangiomas that summer as well.
Without realizing it, I began emulating just about everything there was about Debbie. She was a cute blonde, with a laugh that not only made you laugh along, but made you stop what you were doing to watch her laugh! Debbie was always tan and wore a gold rope chain around her neck that she said Billy gave her when she had her baby. The story was, that although naked while delivering her baby, she did not remove her rope chain. And then, the giggles would come as she shared that story repeatedly. I was one of three salesgirls (what we were called then!) and the other two were Susie Hoercher, a student at Southampton College and Samantha Munn of Carrie Munn society fame. Sam Munn was also dating Ivan Obolensky, an actual prince! Her family’s mansion was on Gin Lane directly on the ocean. The one time I went there to pick up Sam, I was completely dumbfounded by the magnificence of it all. Mrs. Woolworth would drive up to Tapemeasure, in in her chauffer driven white Rolls Royce to shop and Dina Merrill would come in whenever new clothing arrived to try them all on. I was beyond star struck and when I would drop these names to my crazy mother, she would ooh and aah, always with envy.
Debbie would take her lunch break on a Kurtz cot in the back of the store in a tiny courtyard that lay in the blazing sun. She would apply Marcella Borghese sun gelee onto her arms, legs and face and sunbathe for an hour. I can remember that sweet yet exotic, almost musky scent. I marched myself over to Saks Fifth Avenue on Main Street and also bought Borghese to follow suit. I basked in that sun with my freckled-Irish-not-to-be-in-sun skin day after day, and am convinced that my current skin cancers, began then!
Lothars were the big fashion item that summer. They were thin cotton safari type shirts with matching bell bottom pants. Lothars were tie dyed but with only one pastel color and white. The most popular were the original Lothars which were light blue and white. Then, other colors were added including pink, yellow, green, and black. Debbie wore a different one each day and we sold a ton of those very chic outfits. They were definitely the hot fashion of the season.
To go with Lothars and mostly anything else Debbie wore, she donned these cute sandals that were Navaho looking to me with lacing around their leather edges. They were flat and the ones she wore were white though they did come in colors. Debbie bought these at the fancy Southampton shoe shop, called Boot Tree. The sandals were called Jackie Rogers, not Jack Rogers as they are now. These sandals stayed with me for all these years and as I saw women wearing them summer after summer, I wondered why I never got them myself. In the last few years, they have become even more popular and I became more fixated on them. Last week, I caved and found a pair on Ebay. They are ridiculously overpriced now and still were, even on Ebay despite being used, but nonetheless, I own them now and feel quite pleased.
Over the years I became somewhat obsessed over emulating Debbie. I worked for her all that summer, but when fall came, there just was not enough business. The Hamptons were still primarily summer resorts and so Michael Dayan’s Tapemeasure closed for the season. I was now unemployed and only able to stay in Hampton Bays for a few more months, which became lonely and cold. Debbie had a fall party that year called “Come as you were in the 50’s.” I wore Dr. Denton pjs and came with a date who was an attorney and drove a red Corvette (that is all I remember about him!). She served MacDonald’s style shoe string fries and burgers and we were all duly impressed. All Debbie’s parties were fabulous and creative. I continued to visit Debbie regularly until I returned to Richmond Hill and moved back into my odd apartment.
I remained a friend and a devoted fan of Debbie’s for the next 20 or so years. When Debbie opened her first shop on Jobs Lane called Phase Nine, I was green with envy. It was a maternity shop and she had a fun partner. It seemed like the right place at the right time and I was dying to open a similar type shop for years. I believe it only stayed open for a couple seasons, focused on a small niche market, but Debbie always acted as if it was a huge success.
After Phase Nine folded, a couple years later, she bought an existing children’s wear boutique called, Robin Christopher. I remember attending the champagne gala opening feeling like I would just spend the rest of my life trying to be Debbie. I shared that thought with my fiancee that night. This shop was even bigger and in a better location and I was twice as envious. I now drank Gin and Tonics with lime albeit only once in awhile, as opposed to Debbie’s nightly ritual. I went on a high protein diet a la Dr. Atkins, because Debbie did. She taught me to eat the bread and skip the butter, but in retrospect, I think that is the opposite of how that diet works! I chose yellow and green as my favorite color combination, as Debbie did. And, although I hated fudge and still do, I purchased it occasionally from Ye Olde Fudge Shoppe on Main Street, acting as if it were a huge treat, as Debbie did. I even sprung for the purchase of Dom Perignon champagne for special events, as Debbie did. I collected Bilston and Battersea enameled Halcyon boxes from Caldwell Alexander, as Debbie did, though never acquiring nearly the collection she had. I copied her laugh. I threw my head back when I laughed and tossed my hair even though it wasn’t blond. And most importantly, I got a gold rope necklace that I wore around my neck every single day.
When I married Shep (in the Hamptons of course) in 1978, Debbie and Billy came to our reception, donned completely in pink and green. You just couldn’t get more Hamptons than that. After Shep and I were married, we received regular invitations to Debbie and Billy’s for dinners and parties. Mostly, they served lobster, always champagne and always gin and tonics with lime. Dessert was dense and delicious chocolate cake that Debbie had whipped up and in many ways, she rivaled Martha Stewart. Her parties were always fabulous and her kitchen was always very, very white so needless to say, I have lusted after a white kitchen for many years. When I had babies or young children in later years, and towed them along, I always felt awkward and inappropriate.
Shep and I had Debbie and Billy over to our Hampton Bays house for dinner one night with our friends, Mickey and Buck from Sutton Place in Manhattan. We too, lived in Manhattan but we had purchased this Hampton Bays weekend house one rainy Mother’s Day weekend while visiting Debbie and Billy. It was an odd and impulsive purchase in looking back. The ranch house had a Corning cook top which was a new concept at the time and we did not realize that only Corning cookware would make contact with it to get hot enough to cook!. Of course, our menu was lobster and baked potatoes and of course, the cocktail of the evening was gin and tonic. All six of us were completely blitzed by dinner because the water NEVER boiled and we waited and waited and waited to eat while drinking to kill the time. Disaster dinner! I have a photo of the six of us, still. We also spent a couple of New Year’s Eves with The Owens at parties. Debbie always looked completely fabulous. I always felt ultra frumpy and dark around her.
To elaborate, I really never felt good around Debbie. Even the day she met me in New York City and took me to the Waldorf for lunch, which I loved. I was young, working in New York and very hip yet, I still felt dumpy! Over that lunch, Debbie mentioned that she had been on “the pill” for years and years and though she had frequent migraines, she didn’t care. I was concerned, but she was too happy and glib to care. I remember how I adored the fancy Waldorf bathroom and loved having this lunch, yet still felt lesser than, when with Debbie.
In later years, we moved into the Hampton Bays house year round. On the rare days when I ran out without any makeup on, I could be sure to run into Debbie, smiling, beaming, and beautiful. She played tennis regularly and wore her cute whites everywhere. The worst encounter was when I went to her beach club invited by a friend of mine. I had so many kids and this time, I was hauling around baby number three or four on a blustery day at this bay beach. I was overweight, post baby and more bedraggled than ever. While carrying the baby and trying to rescue my flying beach umbrella, I tripped and fell into the sand, baby in arms, umbrella flailing, my hair like a mad woman’s and my post pregnancy swimsuit, ungainly and unflattering. I looked up and there she was—glowingly tan, thin, sleek, blond hair pulled into a tight knot, and that gorgeous white smile she always wore. “Oh, how are you?” she squealed. “I am okay, this is MY third baby boy here.” “This is MY new tennis bracelet” she said as she flashed this dazzling cluster of diamonds all around her tan wrist. All of her jewelry always came from Rose Jewelers on Main Street and once, when Shep decided to buy me a diamond anniversary band he went there to purchase it. I was thrilled and wear it still. But, somehow, my jewels never came close to the sparkle and spectacular quality of Debbie’s. I remember feeling crushed that day, wondering why I was me and Debbie was Debbie.
Once, when Debbie gave me her copy of Tracy Kidder’s “Old Friends” to read, she wrote inside of it, “We have more in common than you will ever know.” I never could figure out just what she meant. But, to this day, I am flattered.
This story does not end well. Around 1992, Debbie was diagnosed with ovarian cancer. In 1993, I had yet another son, Gregory. I called Debbie to invite her to a christening party and she told me of her diagnosis and chemotherapy. Ever positive I remember her saying, “This is the worst thing that’s ever happened to me, but it isn’t that bad.” I suppose many Adult Children of Alcoholics might feel that way, and Debbie was indeed an offspring of an alcoholic household. “Are you calling me because I have ‘cahn-cer?” she queried. “No, I said, I did not know that. “I’m just calling you because…”
We moved to North Carolina in the summer of 1993 with our four sons and in 1995, we returned to the Hamptons for a visit. My 27 month old baby, Gregory drowned during that trip and devastation set and took permanent residence in our family. A few months later when I called Debbie, she said that she wasn’t doing that well and I responded in the oddest way, “If you die, will you please take care of Gregory”, I sobbed. She did not answer. I continued to call Debbie from time to time as she continued treatment. Always an atheist, she seemed to have found God and was visited by a local fundamentalist minister regularly. She also was thrilled by the sighting of the pope once when she came out of Sloan Kettering hospital and felt that he had looked “directly at her” Once when I called, she described this “ gorgeous golden amber liquid pouring into my arm” which I assumed were platelets. I ended our conversation with, “I love you Debbie.” “I love you too, she said, “very, very much.” And another time, I said, “Debbie, I want to have another child, but I think I am too old to get pregnant.” “That wouldn’t stop me, she said, “Go for it.” And so I did. The rest is history also known as my 12 year old twins.
I don’t know when Debbie died and that bothers me terribly. I have never been able to find out the details and was so deeply involved in rebuilding my own life at the time, that I missed it and no one ever let me know. I have contacted her husband, her sons, and her sister and shared how much she meant to me, and yet, I have never heard back from any of them. I requested this paperweight I painted for her once in my early twenties, that was of course, yellow and green with the words, “Great daughter, wife, and mother.” I wanted it as a memento, but again, no response. So, I have a photo of Debbie lying down under a Christmas tree, looking frail, but of course smiling and blond. She has her arms around her niece and I suspect it was not long before she died. The photo is on the desk in my bedroom and I see it every morning. Debbie always seems to come to me when I am in yoga class and she chatters in my ear. When I am trying to concentrate and relax, I politely ask her to stop. She still chatters and giggles on.
But now, finally, after all these years, I have the sandals, the coveted Jackie/Jack Rogers sandals. Mine are caramel color and white and I think Debbie would have heartily approved.
Tuesday, August 9, 2011
Thursday, June 16, 2011
Overreactions
Tears are welling up in my eyes as I place my groceries on the conveyor belt in Kroger. The elderly woman with chopped gray hair, is ahead of me and buying all the marked down bakery items and 3 quarts of marked down buttermilk. The man, sort of with her (sharing a cart after all) but sort of not, because he separates his groceries from hers with the divider, has gleaned all the rest of the marked down cakes and cookies. I wonder. He too, has some discounted buttermilk. He is big and he is obese. What will they do with all these chemical laden sweets? He looks at the cantaloupes I am buying and says, "Ahh, I was so tempted, but figured, not this time." I'm not sure what that means. Should I give him mine and pay for them? Then, he squabbles over the prices being rung up and frets that he cannot find his $10 bill. His total is $30.36, which oddly includes a copy of Consumers Reports at $6.99. He tells the cashier that he filled his gas tank yesterday and had to go to the bank to get what was left in his account to pay for the gas. I am getting choked up now. He tries to make jokes that aren't funny and no one laughs, not even politely.
My turn now, includes mangoes, peaches, the cantaloupes, cottage cheese, organic cereal and Greek yogurt. Purist? Dieter? Effete food snob? I have my reusable bags for which Kroger gives me extra points. Where are those points and how do I use them? The bagger struggles with my nylon flat bags because he has some type of palsy and completely mangled and tangled hands that can barely move, let along pick up each peach to put into my flat bags. I try to help him, but he pulls away and drops each peach separately in agonizing movements. Now, I am overwhelmed and fighting to hold back my tears. It is all so hard for everyone. It is such a damned struggle for us all to hold it together, to get the things done, to pay for them, to move them, to complete them each and every day.... do we really have to emulate Jesus carrying his cross ALL the time?
I am tender. I am vulnerable. I am in a complete state of terror and panic. My ill son, so very, very ill for the last few years with Chronic Lyme Disease, curled up in a fetal position on most days up in his third floor, isolated bedroom, has a new symptom. He has been bleeding on and off for some time and has hidden this, spending inordinate times in the bathroom day after day. He says it gets better, and it gets worse. I am shocked. I do the thing no one should do, when I go online and look up the symptoms for Colon Cancer. They all match to a T. We rushed to the general practitioner yesterday in the hopes she would find hemorrhoids. She did not. Yes, the blood was dark in color. We need to see a proctologist. I go directly from 0 to 100 in seconds and find myself in the "wanting to rip my skin off" place I am familiar with. I range from overwhelming terror to panic to hysteria feeling that in his ill state he could never survive another onslaught and that I simply could not survive that lack of survival. Confusing? When panic and fear take over all Zen and rational behavior, this is what happens. We cannot see the doctor for 5 days. I feel I will never survive 5 days. I may not. But what does that mean?
My kind and quirky therapist has me come to see her last night. On the way there, I find myself driving behind a screaming ambulance. On the best of days, I cannot, absolutely cannot drive behind an ambulance because I return immediately to the trauma of that moment on 5/3/95. I especially cannot do this tonight, so I am beginning to crumble before I ever arrive. I am jealous of all the people I know who look like they are having happy normal lives. I am jealous of my old acquaintance in the Hamptons whose one daughter just married this weekend, while attended to by her very pregnant sister. They went to nursery school with my kids. They are normal. I am envious. I am jealous of my friend who I met in Europe in the 70's and whose very wealthy, healthy and successful son just got engaged and is planning a fabulous NY wedding. I do not wish these friends ill harm in any way and I really am happy for their joy, but along side that is envy. Can those two emotions coexist? Perhaps. So, when a smiling couple emerges from my therapists office, indeed, I am jealous of them too.
Basically, the therapist tells me that I need to get my act together and I can see the fear on her face when I begin sobbing and shaking. I can feel my whole body heaving when I try to describe the fear that I am accusing her of not understanding. Who really can understand the depth of dread and angst that I live with? No one can. But perhaps, that doesn't matter. Peter is not my only child, she reminds me. It is true. I must remain standing through the tornados to care for the others, especially the little ones. I need to imagine that things may not be the worst, and might be less than that. I need to divert myself from the ruminating. Is that possible? Don't know. Will see. My mother, my crazy, crazy mother used to say, "To stand from fear, set free and wait." Did she leave me some wisdom?
My turn now, includes mangoes, peaches, the cantaloupes, cottage cheese, organic cereal and Greek yogurt. Purist? Dieter? Effete food snob? I have my reusable bags for which Kroger gives me extra points. Where are those points and how do I use them? The bagger struggles with my nylon flat bags because he has some type of palsy and completely mangled and tangled hands that can barely move, let along pick up each peach to put into my flat bags. I try to help him, but he pulls away and drops each peach separately in agonizing movements. Now, I am overwhelmed and fighting to hold back my tears. It is all so hard for everyone. It is such a damned struggle for us all to hold it together, to get the things done, to pay for them, to move them, to complete them each and every day.... do we really have to emulate Jesus carrying his cross ALL the time?
I am tender. I am vulnerable. I am in a complete state of terror and panic. My ill son, so very, very ill for the last few years with Chronic Lyme Disease, curled up in a fetal position on most days up in his third floor, isolated bedroom, has a new symptom. He has been bleeding on and off for some time and has hidden this, spending inordinate times in the bathroom day after day. He says it gets better, and it gets worse. I am shocked. I do the thing no one should do, when I go online and look up the symptoms for Colon Cancer. They all match to a T. We rushed to the general practitioner yesterday in the hopes she would find hemorrhoids. She did not. Yes, the blood was dark in color. We need to see a proctologist. I go directly from 0 to 100 in seconds and find myself in the "wanting to rip my skin off" place I am familiar with. I range from overwhelming terror to panic to hysteria feeling that in his ill state he could never survive another onslaught and that I simply could not survive that lack of survival. Confusing? When panic and fear take over all Zen and rational behavior, this is what happens. We cannot see the doctor for 5 days. I feel I will never survive 5 days. I may not. But what does that mean?
My kind and quirky therapist has me come to see her last night. On the way there, I find myself driving behind a screaming ambulance. On the best of days, I cannot, absolutely cannot drive behind an ambulance because I return immediately to the trauma of that moment on 5/3/95. I especially cannot do this tonight, so I am beginning to crumble before I ever arrive. I am jealous of all the people I know who look like they are having happy normal lives. I am jealous of my old acquaintance in the Hamptons whose one daughter just married this weekend, while attended to by her very pregnant sister. They went to nursery school with my kids. They are normal. I am envious. I am jealous of my friend who I met in Europe in the 70's and whose very wealthy, healthy and successful son just got engaged and is planning a fabulous NY wedding. I do not wish these friends ill harm in any way and I really am happy for their joy, but along side that is envy. Can those two emotions coexist? Perhaps. So, when a smiling couple emerges from my therapists office, indeed, I am jealous of them too.
Basically, the therapist tells me that I need to get my act together and I can see the fear on her face when I begin sobbing and shaking. I can feel my whole body heaving when I try to describe the fear that I am accusing her of not understanding. Who really can understand the depth of dread and angst that I live with? No one can. But perhaps, that doesn't matter. Peter is not my only child, she reminds me. It is true. I must remain standing through the tornados to care for the others, especially the little ones. I need to imagine that things may not be the worst, and might be less than that. I need to divert myself from the ruminating. Is that possible? Don't know. Will see. My mother, my crazy, crazy mother used to say, "To stand from fear, set free and wait." Did she leave me some wisdom?
Monday, May 23, 2011
Rabbit Hole
Peter called us from the Lyme protest in DC and asked, "What are you guys doing tonight?" "Renting a movie," I responded so cavalierly... "Huh?" Peter responded, "You never do that." "Yes, well, the twins are out a friend's house and we so wanted to see yet another movie that had come and gone as they usually do. It is 'Rabbit Hole' " "Oh no, Peter said, "don't do that." We did it anyway. We should not have. And now, I am in the trenches once again, unable to get it out of my mind.
For those who do not already know, it is about The Corbetts, a couple who has lost a young child in an accident when he ran after his dog into a road and was run down by a teen driver. It is a mostly low key, almost hard to hear, tight, stressful movie. But, here's the thing. I lived the life they depict. Oh there were a few minor adjustments in casting, location, and family structure. Most of all, the fact that at the time of my young child's death due to drowning, we also had three surviving children. But, it is the tension, the lack of breathing and the impossible task of living that I recognized in this movie, with my heart and soul. As for the main difference -- the surviving kids -- here's the angst. Shep and I, to this day, have never been able to decide whether that was better or worse for us at the time. I mean, hold on there -- of course, we are grateful to every fiber in our bodies that we had and still have these absolute blessings of three wholesome sons and in retrospect, I am not sure that I could have, or would have survived without them. But, at the time of our holocaust, we really were not sure.
Here's the thing. In the days, the weeks, the months and then surprisingly, the years following the death of your child, NOTHING is right. As was so well depicted in this movie, no matter what each of the parents did or did not do, it could never be right. From the simple things like the way you look, the way food tastes, the act of trying to sleep, going to the bathroom, showering, brushing or not brushing your teeth...NOTHING feels or seems as it was. And, for the most part, NOTHING is the same at all. On many days, you want desperately to find a way to rip your skin off. I mean that literally, because the truth is, you cannot fathom staying in this skin a moment longer. And so, in this movie, the mother of the child is mostly feigning denial as she attempts to go about life and dismantle the memories of her child. She tries to give away his things, strip his room, remove all photos, refrigerator art work, neighbors, friends, her son's dog, other little children. She thinks she can simply forge ahead into life sans her child. Her husband on the other hand, wants to have it all in his face. He wants the smells, the sights, the pets, the friends, the essence of his child with him as he watches videos over and over and over, stroking the camera lens as he does. He wants to drown in the images and memories of his precious son. Neither is workable. They go to Compassionate Friends meetings together. She finds this impossible and leaves rudely. He finds it a possible help and keeps going even without her. In a way, the movie minimized the agony one is in at these meetings by having Mr. Corbett become attracted to one of the meeting leaders. This would be highly unlikely since your whole self is so totally unpresent that I doubt you would even notice Beyonce sitting across the table of torture. One's heart would need to be beating to find oneself attracted to someone and hey, there is barely a detectable pulse. Corbett tries though. He tries to spend time with this "other woman" and even tries smoking pot with her. "Could he have fun?" he is wondering. Nothing works, remember, NOTHING. He even goes to her home with clearly ill intentions as his own wife becomes more and more impossible to live with. It doesn't work. He is unable to connect to another woman after all and turns and leaves.
As for his wife. She tries too. She tries by connecting to the young male driver of the car that killed her son. She stalks him in a way, watching him get on and off the school bus to high school each day. Then, she begins meeting with him in parks to talk. They stare straight ahead, never making eye contact and they speak in short, low, parts of sentences in as flat an affect as possible. They cannot go to the well of emotion. They both know that and so they don't. They air brush the burning topic here and there, but not to its core. It is not possible. NOTHING, remember, nothing.
This couples marriage is on the rocks. So, is the marriage of most bereaved parents. Of course, what else could happen? When you cannot be in your own skin, you sure don't want to be skin to skin with someone else. This couple is grieving in polar opposite spheres and that becomes impossible.
As for Shep and me and how it felt to have others in the house, it is complicated. But, the thing is, you cannot lift your head up off the pillow. You awaken in the morning, shocked that in fact, the same horror show you left at night is awaiting you fresh in the morning. If you brush your teeth, you have made a major effort. Oftentimes, you don't. But, you see there are these three other young kids at home and they do need breakfast, lunch, and dinner. They do need to be driven here and there. Their birthdays come. Christmas comes. They do need to be taken to Hospice and to therapists to help them deal with their own personal devastation. But, you just don't feel that there is any way to get up and do those things. Often, others come and help and that is a godsend. But sometimes, you are it and you have to get up and go. Those are the times when Shep and I would look at each other and wish that we could just be alone to cry for hours and not have to do anything more than listen to each others wails of grief and loss and the desperate missing of our squishy two year old.
The couple in this movie didn't have that distraction, but they were very close to losing each other. It is estimated that more than half of marriages fail following the death of a child, with the first six months being the most disastrous. In the end, this couple seems to find their way which is a relief for those of us watching. For me, I am deeply grateful that my husband, Shep and I grieved in very similar ways and like wet noodles could never really prop each other up, but managed to be stronger on the day that the other was weaker. We chose to immerse ourselves in the memories, the photos, the scents, the memorials. For us, it strengthened our marriage, because it was as if we had this secret and no one else could begin to understand what we were going through. But, we did both know and if we left each other, than if fact, there would be no one who knew the shared love and loss.
For those who do not already know, it is about The Corbetts, a couple who has lost a young child in an accident when he ran after his dog into a road and was run down by a teen driver. It is a mostly low key, almost hard to hear, tight, stressful movie. But, here's the thing. I lived the life they depict. Oh there were a few minor adjustments in casting, location, and family structure. Most of all, the fact that at the time of my young child's death due to drowning, we also had three surviving children. But, it is the tension, the lack of breathing and the impossible task of living that I recognized in this movie, with my heart and soul. As for the main difference -- the surviving kids -- here's the angst. Shep and I, to this day, have never been able to decide whether that was better or worse for us at the time. I mean, hold on there -- of course, we are grateful to every fiber in our bodies that we had and still have these absolute blessings of three wholesome sons and in retrospect, I am not sure that I could have, or would have survived without them. But, at the time of our holocaust, we really were not sure.
Here's the thing. In the days, the weeks, the months and then surprisingly, the years following the death of your child, NOTHING is right. As was so well depicted in this movie, no matter what each of the parents did or did not do, it could never be right. From the simple things like the way you look, the way food tastes, the act of trying to sleep, going to the bathroom, showering, brushing or not brushing your teeth...NOTHING feels or seems as it was. And, for the most part, NOTHING is the same at all. On many days, you want desperately to find a way to rip your skin off. I mean that literally, because the truth is, you cannot fathom staying in this skin a moment longer. And so, in this movie, the mother of the child is mostly feigning denial as she attempts to go about life and dismantle the memories of her child. She tries to give away his things, strip his room, remove all photos, refrigerator art work, neighbors, friends, her son's dog, other little children. She thinks she can simply forge ahead into life sans her child. Her husband on the other hand, wants to have it all in his face. He wants the smells, the sights, the pets, the friends, the essence of his child with him as he watches videos over and over and over, stroking the camera lens as he does. He wants to drown in the images and memories of his precious son. Neither is workable. They go to Compassionate Friends meetings together. She finds this impossible and leaves rudely. He finds it a possible help and keeps going even without her. In a way, the movie minimized the agony one is in at these meetings by having Mr. Corbett become attracted to one of the meeting leaders. This would be highly unlikely since your whole self is so totally unpresent that I doubt you would even notice Beyonce sitting across the table of torture. One's heart would need to be beating to find oneself attracted to someone and hey, there is barely a detectable pulse. Corbett tries though. He tries to spend time with this "other woman" and even tries smoking pot with her. "Could he have fun?" he is wondering. Nothing works, remember, NOTHING. He even goes to her home with clearly ill intentions as his own wife becomes more and more impossible to live with. It doesn't work. He is unable to connect to another woman after all and turns and leaves.
As for his wife. She tries too. She tries by connecting to the young male driver of the car that killed her son. She stalks him in a way, watching him get on and off the school bus to high school each day. Then, she begins meeting with him in parks to talk. They stare straight ahead, never making eye contact and they speak in short, low, parts of sentences in as flat an affect as possible. They cannot go to the well of emotion. They both know that and so they don't. They air brush the burning topic here and there, but not to its core. It is not possible. NOTHING, remember, nothing.
This couples marriage is on the rocks. So, is the marriage of most bereaved parents. Of course, what else could happen? When you cannot be in your own skin, you sure don't want to be skin to skin with someone else. This couple is grieving in polar opposite spheres and that becomes impossible.
As for Shep and me and how it felt to have others in the house, it is complicated. But, the thing is, you cannot lift your head up off the pillow. You awaken in the morning, shocked that in fact, the same horror show you left at night is awaiting you fresh in the morning. If you brush your teeth, you have made a major effort. Oftentimes, you don't. But, you see there are these three other young kids at home and they do need breakfast, lunch, and dinner. They do need to be driven here and there. Their birthdays come. Christmas comes. They do need to be taken to Hospice and to therapists to help them deal with their own personal devastation. But, you just don't feel that there is any way to get up and do those things. Often, others come and help and that is a godsend. But sometimes, you are it and you have to get up and go. Those are the times when Shep and I would look at each other and wish that we could just be alone to cry for hours and not have to do anything more than listen to each others wails of grief and loss and the desperate missing of our squishy two year old.
The couple in this movie didn't have that distraction, but they were very close to losing each other. It is estimated that more than half of marriages fail following the death of a child, with the first six months being the most disastrous. In the end, this couple seems to find their way which is a relief for those of us watching. For me, I am deeply grateful that my husband, Shep and I grieved in very similar ways and like wet noodles could never really prop each other up, but managed to be stronger on the day that the other was weaker. We chose to immerse ourselves in the memories, the photos, the scents, the memorials. For us, it strengthened our marriage, because it was as if we had this secret and no one else could begin to understand what we were going through. But, we did both know and if we left each other, than if fact, there would be no one who knew the shared love and loss.
I Forgot to Pray!
A couple of weeks ago, my chronically ill son, Peter hit the skids with a sodium level that was so alarmingly low, he was expected to have seizures. We hear this can be typical for chronic Lyme patients on long term IV antibiotics, but that made it no less alarming. We raced him to a nearby, (albeit substandard, ER), where he was given IV fluids and loaded with sodium. He then needed to be admitted and transported to a real hospital by ambulance. Understand that for his dad and for me, being in an ER is no easy feat. I mean, of course it's not, for anyone. But, for us, it brings with it a whole slew of trauma triggers and it is an exhausting fight to maintain presence and not slip away to that dreadful night in 1995 when our then youngest son, Gregory, died. To this day, I still fight nausea when I see a racing ambulance and forever, the sight of vitals bleeping away from an IV sends me into a panic. But, with hard work, we can now differentiate and know that we are here with Peter, 16 years later and things are fairly stable.
So, Peter was admitted to Duke Raleigh hospital (a wise and self preserving choice made by dear husband, Shep as it is so much closer for us to get to) and I actually went to work for a few hours while this transfer took place. When I was done with work, I came and sat in a chair in Peter's room where I stayed for most of the next day and a half. Peter convinced me to go home and sleep which I did, but other than that, I stayed. I spent a lot of time just staring at his ashen face, his emaciated body, his long stringy unkempt hair, his exhaustion that he describes as being "deep in his bones." I stared wondering what had happened to the last few years of this brilliant, charismatic life that I had watched unfold with such pleasure and pride. Did I curse him in some superstitious way by always saying, "Ah, Peter has the Midas touch. Everything he does, everywhere he goes, everything he tries, turns to gold." It was true though. He was so successful every step of the way, straight A's all through school including the two years when he succumbed to deep, grief related depression. He was captain of every sports team in high school, won all the awards he could, including a totally free ride to NCSU Parks Scholarship program. He landed a summer internship with the NFL where he became so beloved that they pleaded with him to stay when summer ended. So, he stayed for a whole year before deciding he wanted to go to Harvard instead of back to NC State University and sure enough -- he got in and soared through Harvard, graduating with honors. When he wanted to experience the NBA, he did, landing another summer internship! And then, after graduation, he became a very successful business consultant in Boston. His future held only the best of everything and he was star bound, although unlike many stars, Peter really had a deep heart and social justice commitment as well. The perfect combination!
So, when I sat watching him, I thought of all those things and more. I tried hard to get work done on my computer. I read Real Simple from cover to cover, vowing to be more organized. I went to eat lunch in the cafeteria and being horrified at the unhealthy offerings, left and hit Trader Joe's. Then I , brought back with me as many salty snacks as I could fit in my canvas bag to pump Peter full of more salt. Peter and I laughed with horror at the food on his meal trays which ranged from yellow jello to a dark grayish "raspberry" sorbet to mystery meat to artificial sweetener included with all. How could the healthiest of us ever recover given a diet like this? Where was Jamie Oliver at a time like this? As usual, Peter and I vowed to work on making healthy hospitals sometime, someday. But, I wondered, "When? When will my boy get back to changing the world?" We were then told that he could not be discharged until he ate meals and walked up the hallway. Until then, all Peter was doing, all he had the energy to do, was sleep. But, one more look at the yellow Jello and we said, "Okay, we have to get out of here." And so, he ate what he could and we made three painfully slow walks up and back to the nurses station. His stats were better enough so that by the second night, we got our ticket out of jail. Whew.
When I was in church the next morning, I had this sudden, shocking thought. Through the whole 48 hour incident, I believe I had forgotten to pray!! I wondered how this could have possibly have happened. I beat myself up for awhile. I questioned my faith and then my commitment to it, to my family, to myself. WHAT was I thinking? How did I forget to at least chant the Anne Lammott prayer of "Help me, help me, help me!" No "Lord's Prayer? Nothing? I don't know... I really don't know how I lost my way and forgot to at least chat with the God I know is always with me. But perhaps, that is just it. I don't need to call upon him, he is there. And maybe, I really was praying all along. Bearing witness, showing up, being there, not leaving, asking the doctor questions, encouraging my patient. Maybe, staring at my son feeling the deepest, most intense love and compassion that is available to us as humans, is in fact, prayer. My love running so deep from my heart to his, is this prayer at its heart? I am there. I am present. I show up. I have prayed.
So, Peter was admitted to Duke Raleigh hospital (a wise and self preserving choice made by dear husband, Shep as it is so much closer for us to get to) and I actually went to work for a few hours while this transfer took place. When I was done with work, I came and sat in a chair in Peter's room where I stayed for most of the next day and a half. Peter convinced me to go home and sleep which I did, but other than that, I stayed. I spent a lot of time just staring at his ashen face, his emaciated body, his long stringy unkempt hair, his exhaustion that he describes as being "deep in his bones." I stared wondering what had happened to the last few years of this brilliant, charismatic life that I had watched unfold with such pleasure and pride. Did I curse him in some superstitious way by always saying, "Ah, Peter has the Midas touch. Everything he does, everywhere he goes, everything he tries, turns to gold." It was true though. He was so successful every step of the way, straight A's all through school including the two years when he succumbed to deep, grief related depression. He was captain of every sports team in high school, won all the awards he could, including a totally free ride to NCSU Parks Scholarship program. He landed a summer internship with the NFL where he became so beloved that they pleaded with him to stay when summer ended. So, he stayed for a whole year before deciding he wanted to go to Harvard instead of back to NC State University and sure enough -- he got in and soared through Harvard, graduating with honors. When he wanted to experience the NBA, he did, landing another summer internship! And then, after graduation, he became a very successful business consultant in Boston. His future held only the best of everything and he was star bound, although unlike many stars, Peter really had a deep heart and social justice commitment as well. The perfect combination!
So, when I sat watching him, I thought of all those things and more. I tried hard to get work done on my computer. I read Real Simple from cover to cover, vowing to be more organized. I went to eat lunch in the cafeteria and being horrified at the unhealthy offerings, left and hit Trader Joe's. Then I , brought back with me as many salty snacks as I could fit in my canvas bag to pump Peter full of more salt. Peter and I laughed with horror at the food on his meal trays which ranged from yellow jello to a dark grayish "raspberry" sorbet to mystery meat to artificial sweetener included with all. How could the healthiest of us ever recover given a diet like this? Where was Jamie Oliver at a time like this? As usual, Peter and I vowed to work on making healthy hospitals sometime, someday. But, I wondered, "When? When will my boy get back to changing the world?" We were then told that he could not be discharged until he ate meals and walked up the hallway. Until then, all Peter was doing, all he had the energy to do, was sleep. But, one more look at the yellow Jello and we said, "Okay, we have to get out of here." And so, he ate what he could and we made three painfully slow walks up and back to the nurses station. His stats were better enough so that by the second night, we got our ticket out of jail. Whew.
When I was in church the next morning, I had this sudden, shocking thought. Through the whole 48 hour incident, I believe I had forgotten to pray!! I wondered how this could have possibly have happened. I beat myself up for awhile. I questioned my faith and then my commitment to it, to my family, to myself. WHAT was I thinking? How did I forget to at least chant the Anne Lammott prayer of "Help me, help me, help me!" No "Lord's Prayer? Nothing? I don't know... I really don't know how I lost my way and forgot to at least chat with the God I know is always with me. But perhaps, that is just it. I don't need to call upon him, he is there. And maybe, I really was praying all along. Bearing witness, showing up, being there, not leaving, asking the doctor questions, encouraging my patient. Maybe, staring at my son feeling the deepest, most intense love and compassion that is available to us as humans, is in fact, prayer. My love running so deep from my heart to his, is this prayer at its heart? I am there. I am present. I show up. I have prayed.
Wednesday, April 27, 2011
"Putting" the Baby
“PUTTING THE BABY”
What is it with our culture that has led us to believe we should prop the baby somewhere, somehow and then run for our independence or sleep? I see this a lot in the field I am in. I am a lactation consultant by trade; a mother by six sons. Human babies are “holding” mammals. They thrive on skin to skin contact, they stabilize their body temperature according to mom’s, they regulate their heart rate in the same way. Babies curl up into a mom’s breast after they feed and fall into a blissful sleep and often have a small smile on their faces. Mom’s thrive along with babies from this continuous contact as well. I often think back to the kind of deep sleep I fell into often following breastfeeding while lying down. I don’t believe I have ever slept that deeply since.
I am not a dreamer and I am not unrealistic. I am a multi-tasker with the best of the lot. I never really enjoyed trimming my Christmas tree with one arm while I held the baby with the other. Typing with one hand is less than efficient. Cooking is extremely challenging. Tying the older kid’s shoes is completely frustrating. And going to the bathroom is an always exception to the rule. But, it was only for a period of time and hey, I got really creative.
I remember early on when I was on kiddo number two perhaps, watching a good friend of mine “putting the baby.” Her baby was about six months old and had just begun sitting up on her own. So, mom would put the baby down on the floor, sit her up right and surround her with the latest Fisher Price toys. Then, this mom would take off like a jet for the kitchen or another room, away from baby. Within a very short time, baby would start to cry, so mom would run in and throw more toys in the pile and baby would cry again. Then, more toys and more crying, and well, you get the picture. I never got it. I always wondered why she didn’t just pick the baby up and carry her as she begged for. While I wondered this, I seemed to always have a baby on my hip
Unfortunately, I was a baby sling failure. I don’t know why. I was a La Leche League diehard and even a leader for some time. Most LLL babies were comfortably cozy in their Maya wrap ring slings. These are made of Guatemalan fabric and give any mom and instant “hippie-granola-mama” style. At the time, I could never figure out what one would do with all that extra fabric and how to use one. I did take a stab at a front pouch for awhile and I did wear a Snugli for a time until I felt that I would faint away from the heat. But, I never really got hooked on these baby carriers that in retrospect, would have been very helpful. I wish I had and now, often recommend them.
But, here’s my current concern. Swaddling. I was at a lactation conference a few years ago when I first saw this very busy booth in the exhibit hall. It was Dr. Harvey Karp and he was promoting his new video, his new swaddle wraps and books. I stood and watched the video and alarms went off in my head as I thought, “something is not right about this.” Swaddling has been broadly embraced. There are hospital nurses who are known for their ability to turn a newborn into an instant burrito, whose swaddling techniques are revered by all. They take that baby and turn it into one inatimate object. Perspective parents are taught swaddling technique in childbirth classes. A good swaddling looks very much like a strait jacket. It has all baby’s limbs tightly tucked inside, with only a head peeking out. The baby cannot move a muscle and it seems to me that this would feel horribly restrictive.
Recently at another conference I attended, I listened to a presentation on the negative aspects of this now common practice. In order to add impact to her talk, the presenter, a well- known author, bound several audience volunteers in scarves and wraps so that their arms were immobilized tightly against their body. These women eventually began to shift in their seats and after awhile, some even began a slight rocking movement. They looked flushed and sweaty and in time, some requested to be unbound in a panicky voice. They all reported hating being bound. Perhaps babies do too.
Worst of all, is the danger to these precious newborns. It seems the goal is to ‘trick the baby” into feeling like he is still in the womb! Swaddling raises body heat. It also restricts hands and arms making it impossible to touch one’s face or to signal with hunger cues. Babies actually sleep through feedings and fail to gain weight appropriately, often resulting in supplementation with formula and bottles. It is a slippery slope and often, a downward spiral from there. But, here the key word is always, “sleep.” If something makes babies sleep longer, this is key and it makes nearly anything, marketable.
What is it with our obsession with getting babies to sleep as long as possible? I know new moms and dads are tired. Oh, they are truly more tired than they have ever been in their lives including those all -nighters they pulled back in college. But, a healthy newborn is NOT supposed to sleep deeply and IS supposed to awaken frequently to eat and to remember at the very least, to breathe. It is NOT healthy or safe for newborn to sleep so soundly and so deeply that they do not awaken regularly, or the unspeakable, not awaken at all.
So, enough with the swaddling. Let’s take off these infant strait jackets and keep baby close by. When he lays down to sleep, you do so as well. Carry him much of the time and let a sling help you do that job. Keep his body temperature cool, as you do yours and let him flail his arms around to his heart’s content. And “no putting” your baby. He wants to be with you, to watch you do all the mundane things you do in a day,that he finds completely fascinating. There’s no running away from him anyway. He is yours forever and madly in love with the very scent and sound and feel of you. Embrace him. The payback to you is huge. I promise.
What is it with our culture that has led us to believe we should prop the baby somewhere, somehow and then run for our independence or sleep? I see this a lot in the field I am in. I am a lactation consultant by trade; a mother by six sons. Human babies are “holding” mammals. They thrive on skin to skin contact, they stabilize their body temperature according to mom’s, they regulate their heart rate in the same way. Babies curl up into a mom’s breast after they feed and fall into a blissful sleep and often have a small smile on their faces. Mom’s thrive along with babies from this continuous contact as well. I often think back to the kind of deep sleep I fell into often following breastfeeding while lying down. I don’t believe I have ever slept that deeply since.
I am not a dreamer and I am not unrealistic. I am a multi-tasker with the best of the lot. I never really enjoyed trimming my Christmas tree with one arm while I held the baby with the other. Typing with one hand is less than efficient. Cooking is extremely challenging. Tying the older kid’s shoes is completely frustrating. And going to the bathroom is an always exception to the rule. But, it was only for a period of time and hey, I got really creative.
I remember early on when I was on kiddo number two perhaps, watching a good friend of mine “putting the baby.” Her baby was about six months old and had just begun sitting up on her own. So, mom would put the baby down on the floor, sit her up right and surround her with the latest Fisher Price toys. Then, this mom would take off like a jet for the kitchen or another room, away from baby. Within a very short time, baby would start to cry, so mom would run in and throw more toys in the pile and baby would cry again. Then, more toys and more crying, and well, you get the picture. I never got it. I always wondered why she didn’t just pick the baby up and carry her as she begged for. While I wondered this, I seemed to always have a baby on my hip
Unfortunately, I was a baby sling failure. I don’t know why. I was a La Leche League diehard and even a leader for some time. Most LLL babies were comfortably cozy in their Maya wrap ring slings. These are made of Guatemalan fabric and give any mom and instant “hippie-granola-mama” style. At the time, I could never figure out what one would do with all that extra fabric and how to use one. I did take a stab at a front pouch for awhile and I did wear a Snugli for a time until I felt that I would faint away from the heat. But, I never really got hooked on these baby carriers that in retrospect, would have been very helpful. I wish I had and now, often recommend them.
But, here’s my current concern. Swaddling. I was at a lactation conference a few years ago when I first saw this very busy booth in the exhibit hall. It was Dr. Harvey Karp and he was promoting his new video, his new swaddle wraps and books. I stood and watched the video and alarms went off in my head as I thought, “something is not right about this.” Swaddling has been broadly embraced. There are hospital nurses who are known for their ability to turn a newborn into an instant burrito, whose swaddling techniques are revered by all. They take that baby and turn it into one inatimate object. Perspective parents are taught swaddling technique in childbirth classes. A good swaddling looks very much like a strait jacket. It has all baby’s limbs tightly tucked inside, with only a head peeking out. The baby cannot move a muscle and it seems to me that this would feel horribly restrictive.
Recently at another conference I attended, I listened to a presentation on the negative aspects of this now common practice. In order to add impact to her talk, the presenter, a well- known author, bound several audience volunteers in scarves and wraps so that their arms were immobilized tightly against their body. These women eventually began to shift in their seats and after awhile, some even began a slight rocking movement. They looked flushed and sweaty and in time, some requested to be unbound in a panicky voice. They all reported hating being bound. Perhaps babies do too.
Worst of all, is the danger to these precious newborns. It seems the goal is to ‘trick the baby” into feeling like he is still in the womb! Swaddling raises body heat. It also restricts hands and arms making it impossible to touch one’s face or to signal with hunger cues. Babies actually sleep through feedings and fail to gain weight appropriately, often resulting in supplementation with formula and bottles. It is a slippery slope and often, a downward spiral from there. But, here the key word is always, “sleep.” If something makes babies sleep longer, this is key and it makes nearly anything, marketable.
What is it with our obsession with getting babies to sleep as long as possible? I know new moms and dads are tired. Oh, they are truly more tired than they have ever been in their lives including those all -nighters they pulled back in college. But, a healthy newborn is NOT supposed to sleep deeply and IS supposed to awaken frequently to eat and to remember at the very least, to breathe. It is NOT healthy or safe for newborn to sleep so soundly and so deeply that they do not awaken regularly, or the unspeakable, not awaken at all.
So, enough with the swaddling. Let’s take off these infant strait jackets and keep baby close by. When he lays down to sleep, you do so as well. Carry him much of the time and let a sling help you do that job. Keep his body temperature cool, as you do yours and let him flail his arms around to his heart’s content. And “no putting” your baby. He wants to be with you, to watch you do all the mundane things you do in a day,that he finds completely fascinating. There’s no running away from him anyway. He is yours forever and madly in love with the very scent and sound and feel of you. Embrace him. The payback to you is huge. I promise.
Thursday, April 14, 2011
Mother Mary Can You Help Me? Help my Son?
My son, Peter, the Chronic Lyme sufferer, is now in what he says is "the worse pain he has ever felt in his entire life." He cannot sleep, he can barely eat, and writhes in bed all day and night. He cannot stand it much longer despite the 42 meds per day that he swallows. Those are in addition to his PICC line administered IV mega-antibiotics and intramuscular shots of morphine with still, no relief. I cannot stand this much longer either. I am sick with the yearning, the begging, the pleading with Jesus Christ at the very least, for relief for my son. Mary, Mary, you know. I know you know. Can you help, short of death, or is that the only distance you know for pain and suffering? I have already given up one son. I cannot lose another.
What is it I need to do? What do I need to not do? What do I need to know? What am I missing? I pray so hard that my teeth clench. I went to the Lenten series last night at my new high falutin’ church with soul. I sat, I kneeled, I buried my face in my hands. I listened to the heartfelt music, some hymns, some more modern sweetness and one rendition of that angelic girl in the heart wrenching movie, In America, singing, “Desperado.” It made me cry once again. If everyone wasn’t so perfectly dressed and coifed in that church, I might have considered (for more than a moment), throwing myself on the marble floor and wailing, sobbing, and begging out loud for God’s mercy on my son. I try different words in my prayers. I try bartering. I try being firm and I try allowing my weakest self to beg shamelessly. My son gets worse instead of better. God, can you not hear me? I am screaming? So many are praying. Still, still, still. Help me, help me, help me.... as Anne Lamott would pray.
Yesterday -- I stared at my son sitting in the medical office for his exam to qualify for disability. I cringed with sadness at his unwashed hair, his messy clothes, his emaciated body that was once that of a star athlete - captain of every high school sports team. I stare at him, mostly in disbelief, wondering how on earth he could have gotten to this limp, devastated state at 26 years old. How, how, how?
Today --changing meds, changing pain killers at the direction of a seemingly very smart pain specialist, invites some withdrawal into the picture. That makes the pain worse while getting off the high doses of opiates switching to lower doses of methadone which one can only increase at a slow and safe rate. She says, “I can’t increase the methadone faster because I could kill you.” I wince. Adding more sleep meds now, the doc suggests we “listen at night to be sure he isn’t having sleep apneas. Check for deep snoring, or irregular breathing. Get a baby monitor and take shifts with your husband to be sure your son is breathing.” Great. I am already barely sleeping. I am in that constant, itchy, someone-please-rip-my-skin-off state. I now need to listen for breathing patterns. My son mentions that this will drive his mother crazy. “She is your mother. That is what mother’s do.” Doesn't every mother have a breaking point or are we made of something other than normal blood and guts?
Which is worse? Being in searing relentless physical pain yourself or watching your child, the one you love with all your heart and soul, in that pain? Has anyone ever answered that question? Mother Mary come to me, bringing words of wisdom, let it be.
What is it I need to do? What do I need to not do? What do I need to know? What am I missing? I pray so hard that my teeth clench. I went to the Lenten series last night at my new high falutin’ church with soul. I sat, I kneeled, I buried my face in my hands. I listened to the heartfelt music, some hymns, some more modern sweetness and one rendition of that angelic girl in the heart wrenching movie, In America, singing, “Desperado.” It made me cry once again. If everyone wasn’t so perfectly dressed and coifed in that church, I might have considered (for more than a moment), throwing myself on the marble floor and wailing, sobbing, and begging out loud for God’s mercy on my son. I try different words in my prayers. I try bartering. I try being firm and I try allowing my weakest self to beg shamelessly. My son gets worse instead of better. God, can you not hear me? I am screaming? So many are praying. Still, still, still. Help me, help me, help me.... as Anne Lamott would pray.
Yesterday -- I stared at my son sitting in the medical office for his exam to qualify for disability. I cringed with sadness at his unwashed hair, his messy clothes, his emaciated body that was once that of a star athlete - captain of every high school sports team. I stare at him, mostly in disbelief, wondering how on earth he could have gotten to this limp, devastated state at 26 years old. How, how, how?
Today --changing meds, changing pain killers at the direction of a seemingly very smart pain specialist, invites some withdrawal into the picture. That makes the pain worse while getting off the high doses of opiates switching to lower doses of methadone which one can only increase at a slow and safe rate. She says, “I can’t increase the methadone faster because I could kill you.” I wince. Adding more sleep meds now, the doc suggests we “listen at night to be sure he isn’t having sleep apneas. Check for deep snoring, or irregular breathing. Get a baby monitor and take shifts with your husband to be sure your son is breathing.” Great. I am already barely sleeping. I am in that constant, itchy, someone-please-rip-my-skin-off state. I now need to listen for breathing patterns. My son mentions that this will drive his mother crazy. “She is your mother. That is what mother’s do.” Doesn't every mother have a breaking point or are we made of something other than normal blood and guts?
Which is worse? Being in searing relentless physical pain yourself or watching your child, the one you love with all your heart and soul, in that pain? Has anyone ever answered that question? Mother Mary come to me, bringing words of wisdom, let it be.
Monday, April 4, 2011
ST PATRICK’S DAY 2011 AT THE NURSING HOME
I am wearing my green shirt, my shamrock scarf, and my green striped socks but I always have some mixed feelings on St. Patrick’s Day. It has been many, many years since my days in New York having the time of my life. I would start out by attending the parade and despite it being mid-March, it was always freezing and some years, it even snowed.. Just watching the parade offered an incredible sense of pride (probably misplaced) It was a thin space moment when you felt all was well with the world and moreover, all was well within thine own self. You are okay, simply because you are Irish, wearing a “Kiss Me I’m Irish” button, and feeling connected to this group of happy people. Following the parade, my friends and I would hit the New York bars choosing carefully to find the ones serving free corned beef and cabbage, green beer and sometimes, green bagels. We hung around drinking and dancing and kissing Irishmen, feeling like we were at our peak. Perhaps, we were.
It is different now. For starters, a North Carolina St. Patrick’s Day is a tad tamer, albeit a lot more enthusiastic than it was when I first moved here 18 years ago. I am older, I have a large family and have experienced enough of life’s dings and dents to have lost the unbridled joy of my youth. I was a pretty Irish-American lass then, I am an older, wrinkled, doughy, Irish mother of six now. My freckles have turned to age spots; my healthy, shiny, chestnut hair is gray and despite being dyed, is dull. And, 14 years ago, my quintessential Irish father, Walter Joseph Conlon took his last breath on St. Patrick’s Day in his green shirt at the Wellington Nursing Facility in Knightdale, North Carolina. His last meal was pureed corned beef and cabbage.
Over the years, I have had so many thoughts about this nursing facility that I have never written about but wish I had. It had a profound impact on my perception of the elderly and how we care for them. It piqued my curiosity of the residents and who they had been, how they ended up there, who the workers were and why they work there. I was deeply sad following most visits and I sat in my car crying in the parking lot more often than not. I tried hard to glean wisdom and sometimes I did. In my endless pursuit for someone old and wise to share some life changing words, I never give up searching. Often I thought, it would be helpful if each resident had a resume taped onto their backs so I could see the lives they had lived, no longer being able to share that, and not really finding anyone interested anyway.
My father died in the Wellington following four wretched years there, where he steadily lost weight, his voice, his teeth, his ability to respond, and lost his entire self. There was a sense of relief for him and for us. I was never happy that he was there. When we were moving south from New York, my brother in law came to North Carolina and chose this place for my father. It was brand new (which was a good thing), but, it was far from where we lived, which was not so good. However, I managed almost weekly visits at first, and then longer stretches of time ensued in between visits as I cared for my three boys and a baby. When I wasn’t there, I felt guilty all the time; when I was there I felt heartsick. There were all those meetings discussing how to keep him fed, how to keep him clean, how to unlock his stiffened joints and legs resulting from Parkinson’s Disease. When we visited, I would put my baby, Gregory in my dad’s lap, strap them both in Dad’s wheelchair and take them outside. Then, I would get some ice cream for each of them, desperately trying to bring a moment of pleasure. Because my father’s disease rendered him unable to communicate and his dementia left him somewhere else, I had no idea how I was doing in my mission to bring him some joy.
In 1995, when my two year old son, Gregory drowned in New York, I came back to North Carolina bereft beyond description. I drove to the nursing home, crawled into the narrow bed in which my father slept and wept uncontrollably in his stiffened arms. Tears rolled down his face though he was unable to say a word. I wrapped his arms around me and laid there crying for some time, saying, “Daddy, Daddy, Daddy…”. In October of 1996, when I passed the boards to become an International Board Certified Lactation Consultant, I brought my father my certificate and again, tears rolled down his face. But, overall, we had little communication during those years. The Wellington struggled to keep staff, to serve food that was acceptable, to feed those who needed feeding, clean the bodies of most residents unable to do so for themselves and meet state standards. Much of the time, they barely made the grade. The constant turnover of staff and administration was of concern, but typical.
My father had a roommate named, Joe Kirk who was as Southern as could be. Joe took to caring for my dad and watching what he ate to prevent him from choking. Despite his low level intelligence, Joe could manage to practically run the Wellington. He had a badge and was often paged over the loudspeaker, which made him feel very vital. The activities director was a true Southerner as well, named, Petra. She was born and bred for this position and brought immense joy and laughter to the mostly miserable residents. She kissed them and danced with them, took them to parades and to shop and made them feel quite important. My father loved her and she loved him and she always made a big fuss over his having been the very first resident in the building. She kissed him right on the lips whenever she saw him. He liked that. She always described my dad as being a real “baseball fanatic.” This was odd news to my sister and me since we had never seen my father the least bit interested in baseball!
When Petra got married, she did so in the day room of the Wellington, with Joe Kirk walking her down the aisle. Then, Joe fell in love with fellow resident, Elizabeth and another wedding was held followed by the two of them taking a joint residence in a room called, “The Honeymoon Suite.” The hallways were decked with photos of various events rigged by Petra and there was always something going on. When my father died, Petra held a memorial service in the day room, followed by the announcement that half the building would now be known as “Conlon Village” in honor of my father having been the first resident and a plaque on the wall with his picture declared this as well. My sister and I were honored and touched. We were honored again, several years later, when the town had a ceremony commemorating the tenth anniversary of the Wellington and we were given an engraved memento with my father’s name.
And so, it became an annual tradition for me to visit the Wellington every St. Patrick’s Day in honor and memory of my dad. I would place a green carnation on his plaque, hug and visit with Petra and bring her soda bread and shamrocks. I would bring my baby boy twins each year and she would ooh and aah and it was always sweet. Then, my rounds of visits with residents would begin though mostly with folks I never knew. But, I would stick my head in room after room, and say, “Hey, Happy St. Patrick’s Day to you. How are you doing?” The responses were mostly polite and southern and noncommital. Some years were more difficult than others, and as the twins grew, they disliked going more and more. Nevertheless, I kept going and took them along, feeling like this too, is a part of life that should not be ignored.
We were most disappointed when Petra left two years ago. We considered no longer returning because of that. After all, Ms. Levinia who asked why Gregory’s wrists were so fat and if they had threads tied on them, had died. Adelaide who wore a lot of jewelry and smiled all the time, said she never married because her hands were gnarled so no one would marry her. She was dead now too despite me carrying on each year about how beautiful she AND her jewelry were. She loved that and beamed. Very sadly, Joe whose Southern accent was so thick I could mostly not understand him, died too. Joe’s bride, Elizabeth was hovering at death’s door last year, so I can only imagine where she is now. Rose Parks who was the resident president, died in her sleep.
So, today, I ask myself, “Who in their right mind, would go to visit a very depressing nursing home, where they know no one, where there are sad memories, where the smell can be so disgusting that it often makes me gag?” The pallor of the patients, the hepatic look to their skin, the blackened flesh where blood is pooling under skin, the mouths hanging open, eyes sealed shut, depraved howls shouted out. Who subjects themselves to that? Some go and sing Christmas carols, but who goes in March? However, off I went and in the front door, there was Frieda answering phones. She too, has been there since opening but I have never been quite sure why… completely lucid and youngish, it seems she has no use of her left side and is wheelchair bound, but surely there must have been a better place to have lived her life. My husband used to know her daughter when they were both in real estate. Frieda says she always wakes up on St. Patrick’s Day and thinks, “Well, Walter’s daughter will be here today.” Sure enough, I show up. I always ask her how her daughter is doing and she says she is fine and today reported that she had just been there in the morning and shaved Frieda’s legs! “Huh?” I said. “You shave your legs???” “Oh yes, honey, been shaving them since I was ten years old.”
So, in and out of rooms I go. The smell today was the worst ever and the fecal odor was almost to the point where I felt I would need to leave. The dwarf woman was still in her room with her tiny walker, miniature chair and low to the floor bed. She seemed about the same, though a bit more grouchy. I met Lulabelle who told me she lived on a farm in Wendell, NC and didn’t understand why people went so many places. She said she had been happy to not need to go anywhere her whole life and to just stay put. “Oh, these poor girls who work here. They work so hard. I feel so sorry for them all.” she said. I asked her, “Wait a minute, how old are you?” “89 years old” she said. “And you mean to tell me you are so glad you never traveled, never went anywhere, never saw a thing other than your farm? How is that possible?” “You got that right, young lady,” she said.
Laverna seemed attractive to me with a sharp haircut of white shiny hair so I began speaking to her. Even in old, old age, we are still attracted to the most attractive, aren’t we? Laverna had traveled, EVERYWHERE and was proud of it, so she told me quite a bit. Her photos of world travel were taped to her walls. She was lucid and grateful but said that her 95 year old husband could not take care of her anymore, which is why she ended up here. But, they could only afford for one of them to be a resident. Oh my. She seemed so smart and I asked her what she had done for a living, guessing that she had been a teacher. “Oh no, she said, “I had the most exciting job.” “Really, I asked, what did you do?” “I was an Avon lady for 15 years!” she exclaimed. When I asked her more specific questions about her son or relatives though, she would say, “I’ll have to get back to you on that.” She also said that her roommate, Mabel is totally vegetative, does not know anything and is fed three times a day by feeding tube. “I dread getting like that,” Laverna said. “Oh, but I am in her mama’s bed now,” she said. I asked what she meant. “Mabel and her mama were roommates here, but, now her mama died at 103, so just Mabel is left.” Okay, then.
Frieda found me wandering the halls and said, “Don’t you want to see Wayne?” “Okay,” I said, wondering who Wayne was. “He was here when your daddy was here.” The putrid smell of ammonia was so acrid in Wayne’s room that I found myself literally holding my breath which made it hard to converse. I complimented Wayne on his Harley Davidson bed covers and left the room in the midst of Wayne telling me he could no longer see. He too though, had such a thick Southern drawl that between the stench and that, I could barely follow what he was saying. I felt guilty for leaving, but it was not possible to stay a moment longer.
I asked a large woman in a super sized wheelchair if she was okay and she said, “Well I am, but my roommate here is dying from cancer.” I went to the bedside of this woman with a huge tumor on her forehead, bent over to listen to her whispering voice, but suddenly found that I could not possibly bear the smell coming from her mouth. Isn’t that awful? I had to leave her and felt absolutely terrible for being quite so shallow. Why couldn’t I have stood it for awhile? She looked terrified.
It was shortly after that, when I found my way to the front door, sat in my car stunned, asking myself over and over what the point of my visit was? I had once again seen the abysmal way to live the final years of one’s life. I had not garnered any real wisdom. I had that smell in my nose and in my head that I knew I would not be able to shake off for some time. Perhaps, I felt young and energetic though and maybe that is worth feeling once in awhile, albeit at others’ expense. Maybe, I brought a spark here or there to someone’s day. I’d like to think that I honored my father and that he knew I was there. His plaque has disappeared mysteriously and NO ONE knows what happened to it. But, I will tell you this, when I got to beautiful Oakwood Cemetery, the historical cemetery in Raleigh, the sun was shining, birds were chirping and my father laid in the earth in peace with his sharp looking military gravestone. It seemed like a much better place.
Ann Conlon-Smith, March 17, 2011
It is different now. For starters, a North Carolina St. Patrick’s Day is a tad tamer, albeit a lot more enthusiastic than it was when I first moved here 18 years ago. I am older, I have a large family and have experienced enough of life’s dings and dents to have lost the unbridled joy of my youth. I was a pretty Irish-American lass then, I am an older, wrinkled, doughy, Irish mother of six now. My freckles have turned to age spots; my healthy, shiny, chestnut hair is gray and despite being dyed, is dull. And, 14 years ago, my quintessential Irish father, Walter Joseph Conlon took his last breath on St. Patrick’s Day in his green shirt at the Wellington Nursing Facility in Knightdale, North Carolina. His last meal was pureed corned beef and cabbage.
Over the years, I have had so many thoughts about this nursing facility that I have never written about but wish I had. It had a profound impact on my perception of the elderly and how we care for them. It piqued my curiosity of the residents and who they had been, how they ended up there, who the workers were and why they work there. I was deeply sad following most visits and I sat in my car crying in the parking lot more often than not. I tried hard to glean wisdom and sometimes I did. In my endless pursuit for someone old and wise to share some life changing words, I never give up searching. Often I thought, it would be helpful if each resident had a resume taped onto their backs so I could see the lives they had lived, no longer being able to share that, and not really finding anyone interested anyway.
My father died in the Wellington following four wretched years there, where he steadily lost weight, his voice, his teeth, his ability to respond, and lost his entire self. There was a sense of relief for him and for us. I was never happy that he was there. When we were moving south from New York, my brother in law came to North Carolina and chose this place for my father. It was brand new (which was a good thing), but, it was far from where we lived, which was not so good. However, I managed almost weekly visits at first, and then longer stretches of time ensued in between visits as I cared for my three boys and a baby. When I wasn’t there, I felt guilty all the time; when I was there I felt heartsick. There were all those meetings discussing how to keep him fed, how to keep him clean, how to unlock his stiffened joints and legs resulting from Parkinson’s Disease. When we visited, I would put my baby, Gregory in my dad’s lap, strap them both in Dad’s wheelchair and take them outside. Then, I would get some ice cream for each of them, desperately trying to bring a moment of pleasure. Because my father’s disease rendered him unable to communicate and his dementia left him somewhere else, I had no idea how I was doing in my mission to bring him some joy.
In 1995, when my two year old son, Gregory drowned in New York, I came back to North Carolina bereft beyond description. I drove to the nursing home, crawled into the narrow bed in which my father slept and wept uncontrollably in his stiffened arms. Tears rolled down his face though he was unable to say a word. I wrapped his arms around me and laid there crying for some time, saying, “Daddy, Daddy, Daddy…”. In October of 1996, when I passed the boards to become an International Board Certified Lactation Consultant, I brought my father my certificate and again, tears rolled down his face. But, overall, we had little communication during those years. The Wellington struggled to keep staff, to serve food that was acceptable, to feed those who needed feeding, clean the bodies of most residents unable to do so for themselves and meet state standards. Much of the time, they barely made the grade. The constant turnover of staff and administration was of concern, but typical.
My father had a roommate named, Joe Kirk who was as Southern as could be. Joe took to caring for my dad and watching what he ate to prevent him from choking. Despite his low level intelligence, Joe could manage to practically run the Wellington. He had a badge and was often paged over the loudspeaker, which made him feel very vital. The activities director was a true Southerner as well, named, Petra. She was born and bred for this position and brought immense joy and laughter to the mostly miserable residents. She kissed them and danced with them, took them to parades and to shop and made them feel quite important. My father loved her and she loved him and she always made a big fuss over his having been the very first resident in the building. She kissed him right on the lips whenever she saw him. He liked that. She always described my dad as being a real “baseball fanatic.” This was odd news to my sister and me since we had never seen my father the least bit interested in baseball!
When Petra got married, she did so in the day room of the Wellington, with Joe Kirk walking her down the aisle. Then, Joe fell in love with fellow resident, Elizabeth and another wedding was held followed by the two of them taking a joint residence in a room called, “The Honeymoon Suite.” The hallways were decked with photos of various events rigged by Petra and there was always something going on. When my father died, Petra held a memorial service in the day room, followed by the announcement that half the building would now be known as “Conlon Village” in honor of my father having been the first resident and a plaque on the wall with his picture declared this as well. My sister and I were honored and touched. We were honored again, several years later, when the town had a ceremony commemorating the tenth anniversary of the Wellington and we were given an engraved memento with my father’s name.
And so, it became an annual tradition for me to visit the Wellington every St. Patrick’s Day in honor and memory of my dad. I would place a green carnation on his plaque, hug and visit with Petra and bring her soda bread and shamrocks. I would bring my baby boy twins each year and she would ooh and aah and it was always sweet. Then, my rounds of visits with residents would begin though mostly with folks I never knew. But, I would stick my head in room after room, and say, “Hey, Happy St. Patrick’s Day to you. How are you doing?” The responses were mostly polite and southern and noncommital. Some years were more difficult than others, and as the twins grew, they disliked going more and more. Nevertheless, I kept going and took them along, feeling like this too, is a part of life that should not be ignored.
We were most disappointed when Petra left two years ago. We considered no longer returning because of that. After all, Ms. Levinia who asked why Gregory’s wrists were so fat and if they had threads tied on them, had died. Adelaide who wore a lot of jewelry and smiled all the time, said she never married because her hands were gnarled so no one would marry her. She was dead now too despite me carrying on each year about how beautiful she AND her jewelry were. She loved that and beamed. Very sadly, Joe whose Southern accent was so thick I could mostly not understand him, died too. Joe’s bride, Elizabeth was hovering at death’s door last year, so I can only imagine where she is now. Rose Parks who was the resident president, died in her sleep.
So, today, I ask myself, “Who in their right mind, would go to visit a very depressing nursing home, where they know no one, where there are sad memories, where the smell can be so disgusting that it often makes me gag?” The pallor of the patients, the hepatic look to their skin, the blackened flesh where blood is pooling under skin, the mouths hanging open, eyes sealed shut, depraved howls shouted out. Who subjects themselves to that? Some go and sing Christmas carols, but who goes in March? However, off I went and in the front door, there was Frieda answering phones. She too, has been there since opening but I have never been quite sure why… completely lucid and youngish, it seems she has no use of her left side and is wheelchair bound, but surely there must have been a better place to have lived her life. My husband used to know her daughter when they were both in real estate. Frieda says she always wakes up on St. Patrick’s Day and thinks, “Well, Walter’s daughter will be here today.” Sure enough, I show up. I always ask her how her daughter is doing and she says she is fine and today reported that she had just been there in the morning and shaved Frieda’s legs! “Huh?” I said. “You shave your legs???” “Oh yes, honey, been shaving them since I was ten years old.”
So, in and out of rooms I go. The smell today was the worst ever and the fecal odor was almost to the point where I felt I would need to leave. The dwarf woman was still in her room with her tiny walker, miniature chair and low to the floor bed. She seemed about the same, though a bit more grouchy. I met Lulabelle who told me she lived on a farm in Wendell, NC and didn’t understand why people went so many places. She said she had been happy to not need to go anywhere her whole life and to just stay put. “Oh, these poor girls who work here. They work so hard. I feel so sorry for them all.” she said. I asked her, “Wait a minute, how old are you?” “89 years old” she said. “And you mean to tell me you are so glad you never traveled, never went anywhere, never saw a thing other than your farm? How is that possible?” “You got that right, young lady,” she said.
Laverna seemed attractive to me with a sharp haircut of white shiny hair so I began speaking to her. Even in old, old age, we are still attracted to the most attractive, aren’t we? Laverna had traveled, EVERYWHERE and was proud of it, so she told me quite a bit. Her photos of world travel were taped to her walls. She was lucid and grateful but said that her 95 year old husband could not take care of her anymore, which is why she ended up here. But, they could only afford for one of them to be a resident. Oh my. She seemed so smart and I asked her what she had done for a living, guessing that she had been a teacher. “Oh no, she said, “I had the most exciting job.” “Really, I asked, what did you do?” “I was an Avon lady for 15 years!” she exclaimed. When I asked her more specific questions about her son or relatives though, she would say, “I’ll have to get back to you on that.” She also said that her roommate, Mabel is totally vegetative, does not know anything and is fed three times a day by feeding tube. “I dread getting like that,” Laverna said. “Oh, but I am in her mama’s bed now,” she said. I asked what she meant. “Mabel and her mama were roommates here, but, now her mama died at 103, so just Mabel is left.” Okay, then.
Frieda found me wandering the halls and said, “Don’t you want to see Wayne?” “Okay,” I said, wondering who Wayne was. “He was here when your daddy was here.” The putrid smell of ammonia was so acrid in Wayne’s room that I found myself literally holding my breath which made it hard to converse. I complimented Wayne on his Harley Davidson bed covers and left the room in the midst of Wayne telling me he could no longer see. He too though, had such a thick Southern drawl that between the stench and that, I could barely follow what he was saying. I felt guilty for leaving, but it was not possible to stay a moment longer.
I asked a large woman in a super sized wheelchair if she was okay and she said, “Well I am, but my roommate here is dying from cancer.” I went to the bedside of this woman with a huge tumor on her forehead, bent over to listen to her whispering voice, but suddenly found that I could not possibly bear the smell coming from her mouth. Isn’t that awful? I had to leave her and felt absolutely terrible for being quite so shallow. Why couldn’t I have stood it for awhile? She looked terrified.
It was shortly after that, when I found my way to the front door, sat in my car stunned, asking myself over and over what the point of my visit was? I had once again seen the abysmal way to live the final years of one’s life. I had not garnered any real wisdom. I had that smell in my nose and in my head that I knew I would not be able to shake off for some time. Perhaps, I felt young and energetic though and maybe that is worth feeling once in awhile, albeit at others’ expense. Maybe, I brought a spark here or there to someone’s day. I’d like to think that I honored my father and that he knew I was there. His plaque has disappeared mysteriously and NO ONE knows what happened to it. But, I will tell you this, when I got to beautiful Oakwood Cemetery, the historical cemetery in Raleigh, the sun was shining, birds were chirping and my father laid in the earth in peace with his sharp looking military gravestone. It seemed like a much better place.
Ann Conlon-Smith, March 17, 2011
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