THE SEWING MACHINE

I was unrestrained and did not let anything get in my way, including sleep. In addition to redecorating, I was getting a lot of satisfaction and relief from anxiety through my sewing. I was judging myself by a set of deadlines that I personally generated. It started when I invested $365 in a new Bernina sewing machine. I had heard that these were the best and my Kenmore was always on the fritz. In addition, I needed to be able to fly the fabric through the machine and this kind of motion disabled the average thread tension. I was desperate to make sure that the new sewing machine paid for itself. I kept track of what I spent on fabric, notions, and what I was able to produce and consequently save. It was an irrational time and place but I was somehow able to justify my sewing mania by all the wonderful things I was making. When you are productive, not only did I justify my own mania but also all of my friends and family were constantly giving me great feedback. By the time I stopped sewing in 1987 everyone on our six- house-street had drapes, clothing or both, that I had made. The intensity of my sewing had me up at three am so I could get a solid three hours of uninterrupted work before anyone else was awake. This meant in addition to being a slave to my sewing I was always at least a little tired and often exhausted. Sewing was the perfect avocation for me; it was a creative outlet, I had full control of my production schedule, there was a tangible output every day, I could rationalize that I was saving the family money and I could burn through my incredible level of manic energy. It kept the tiger at bay while at the same time created an atmosphere almost completely lacking in calm and peacefulness. My exhaustion, added to my anxiety made me constantly irritable and impatient. It was and is still very hard for me to relax and do nothing. Then it was impossible. My children lived in a house of tension and love and wanting to do the right thing. I was short with them and their dad a lot. I wonder what this did for Andrew who was averse to over stimulation. I remember one time I was in the basement where I had my sewing room which I had built myself, to wall off my work from toddlers. This way I did not have to clean it up every time I left my sewing; I just shut and sometimes locked the door.

Anyway, I was down stairs sewing away and Andrew and Lou were trying to get me to stop and do something for them—cannot remember just what at this point. I was asking them to give me a few more minutes to finish whatever I was working on. They waited patiently for a few minutes and then very quietly Andrew cut my tape measure in half. It got my attention. I actually laughed. I was aware that they often needed to do something dramatic to get my attention.

The sewing machine obsession eventually ran off the tracks. By 1985, I was losing my ability to get the same level of satisfaction. I was getting bored and sad. I began to cry and for one week, I stopped even getting dressed in the morning, where beforehand I had barely taken time to undress. I cried for this entire week and really got John’s attention. I told him I could not take it anymore and that I had to get out of the house. Self-editing had run its course. I needed something more. After exploring going back to medical school, I ended up going back to work. 

BRIEFLY FOUR

So now, there were briefly four of us. By May, when Lou was less than eight months old, I had her in for a well-baby visit and the doctor said she had lost weight. I was only giving her breast milk and the pediatrician said,  is there any chance you could be pregnant?—I was. Andrew was on the way and Lou was quickly—too quickly, weaned. She never seemed to mind and while she did not like a rubber nipple, she took quickly to trying to feed herself and drink out of a cup. Lou was our go-go baby and could do amazing feats of climbing. Marnie had been very slow to walk and very tentative about the next step as she still is today. Lou charged ahead often at Marnie's direction to climb up to get cookies at great personal risk. As I got more pregnant with Andrew it became harder to keep up with her non-stop activity, but she was always a good sleeper.

I was just really getting into the swing of managing two kids when we found out Andrew was on the way. After his birth, he was such an easy healthy baby. Growing, developing and keeping up with his sisters. His natural athleticism and his above average height made it easy for him to keep up physically. He was easy going and slow to put his two cents in. When Andrew did come into the conversation, it was often with an intuitive observation. I remember once when he was about seven and I was going into to his room early in the morning to kiss him goodbye on my way to New York (more about that later). We had not managed to connect because I was just too busy to slow down long enough for him and me to talk at his pace. I asked him if he was depressed. He looked hard at me and said, "Mom, are you depressed?” That made me reflect and the answer I came up with was maybe an agitated depression

Anniversary

Today is the 5th anniversary of Andrew's death and tomorrow will be the anniversary of when he was found by a very thoughtful and professional Nether Providence policeman , to whom I am eternally grateful. I am very sad.

ANXIETY MANAGEMENT

Now I was home and pregnant and began redecorating our house. While our situation had improved, we still had only a small amount of discretionary funds. That meant doing almost everything myself. I started with the dining room. Since we had been in our house for over a year, I had some sense I of how I wanted to proceed. The processes of planning and shopping for wallpaper, paint, and fabric took all of my energy.

 As for scraping wallpaper. I did somehow find the money to have the dining room professionally done ($40) because my memory of the speed and efficiency of my wallpaper removal efforts in our Baltimore house were so painfully slow that I could not stand the thought of doing that to myself again. However, once I saw the professionals at work I realized it is all in the know-how. They simply brought our garden hose through the dining room window and connected it to a special nozzle that produced a very fine spray. From there they heavily dampened the paper in the room a section at a time and seemed to effortlessly scrape it off in long sheets.

That was for the paper above the chair rail and the ceiling. They asked me if I wanted them to remove the paper below the rail. I was unaware that this area was papered. I said,” how much?” and when they answered five dollars, thinking I heard a real bargain, said “go for it”. I then watched in disbelief as they removed the remaining paper in one sheet taking less than a minute. Turns out there is something called fabric-backed paper that comes off without scraping.

Looks like I have gotten off the topic again. I thought the words were coming a little easier. Having seen these pros in action I was comfortable moving ahead with taking the wallpaper off my three-story staircase and connecting hallways. I also wanted crown molding put up and somehow figured out the angles and with Johns help at sawing and nailing, we got it up. Next, I painted the hallway, all three stories and then hung the new wallpaper in the dining room, and made drapes, which we hung when I was nine months pregnant with Lou. This mania would persist, with little abatement for the next 30 plus years.

Rereading these last couple of paragraphs, I realize now, 31 years after the fact, that getting help with the wallpaper, and learning about new tools and methods was actually a precursor to my very serious interest in trying to better understand anxiety and the tools and knowledge required to master anxiety management. I can remember standing in our sunroom and looking out the window, and saying to myself, there has to be a better way to live, one can simply not be anxious all the time, it is not healthy. 

THE AMBASSADOR

 It is funny, but we seemed to have more resources available to us now. John’s new job was higher paying that his old one had been. My work at Penn had been well paying and we had managed to save some money. This was so different from our first two years in Philadelphia. We were used to being house poor. We had really stretched, read that, no discretionary income, to buy our house. We could not even buy a lawnmower for our new yard and were using a push mower we had from our city home to mow three quarters of an acre, not good. John’s brother finally came to our rescue with his old mower.

As I was saying, there was now a bit of discretionary income and life seemed to smooth out somewhat. I was able to redecorate the living room and dining room. We bought a color TV and a used second- hand car. Our old car had not been registered in Pennsylvania yet, because we had no money to pay the transfer taxes.  And its transmission was slipping. On one particularly low night, I was trying to visit friends and the car was parked nose in. I could not get the car into reverse and ended up having to be towed-our insurance paid for that-- and have the transmission replaced. I also got a whopping $196 dollar ticket for driving with an out of state registration. I was never so glad to see a car go. While it had been a very inexpensive used Ambassador, (kind of like a Mercedes, only different, was how John's friend who sold it to us liked to say), it had served us well for several years. It seemed to me a vehicle of so many long trips back and forth to Baltimore and Washington coupled with memories.

When we go rid of that car, a weight seemed to shift and we moved into another phase of living. We even got a used Volvo, which at the time was the suburban matron's go to vehicle if you wanted to look prosperous. We did but we were not. 

MOTHERHOOD CONTINUED

Almost since my oldest, Marnie, was born, I had been thinking about how many children we should have. I know I wanted more than one and John felt that the decision to have more children was completely in my camp. I must have had a certain timetable built into my anatomy by my mother’s yearly conception and delivery when I was growing up. We were roughly nine siblings born in 11 years. Therefore, while I was questioning the idea of another baby, we were always otherwise engaged; we were moving, changing jobs, looking for jobs, grieving, or our form of grieving, having nervous breakdowns. There just did not seem to be an opportunity for another baby. When John started talking about was having another baby it seemed reasonable.. Looking back on it now it seems a little rash to complicate our delicate foothold on recovery with a new life.

We did it anyway. Just shows you the power of my irrational side. John seemed stronger. I was still an anxious mess, afraid to answer the phone because it might be work wanting to ask me a question. Read that terrorize me. Or, ask me to sign the graduate certificates that participants earned upon completion of the program I had set up.

My replacement, who had been my assistant, wanted me to sign them because she felt I HAD REALLY BEEN THE AUTHOR OF THE PROGRAM. I FELT NO SUCH OWNERSHIP. Somehow, I typed these in upper case without knowing it.  I was incredulous that it had even happened and I felt no ownership. I think the bigger story here is I felt no ownership or awareness of myself. I am not sure that is past tense either. Actually, I felt like a  professional failure. 

When the new director did come to my house, at her insistence, she explained how excited people were with the new program. She said it was worth the wait. The program had been without a director for the first 4 years of the 5-year program grant when I cam on board. I was in disbelief. 

Because I felt so incompetent and all of those bad, I guess, sad feelings seemed like they were somehow related to my job performance. I had no idea that I was mourning the loss of my mother. Looking back it seems hard to believe that I was so disconnected from my feelings of loss and could only experience them as dread of the workplace.

 I believe that all behavior has meaning to our unconscious selves and furthermore all behavior, whether cellular or systemic, has as its goals survival first, and then growth and transformation. Considering all that, it seems like the loss of my mother was truly too big or too painful for me to bear.  To survive this loss I believe I was protecting myself and creating a new life as well, perhaps to replace my loss or at the very least to distract me from it.

Eileen, our Lou, was born October 21, 1979, not quite a year after my mother died. 

Traveling for the Holiday

I will post again when I return home. 

TOO HARD TO BEAR

Looking back on this it seems impossible that I could have had so little awareness of what was actually happening in my life. The only thing I can conclude is that the loss of a loved one was too great for me to bear. Therefore, I simply transferred my suffering to something more manageable which in all three of my greatest losses was my job. The sad thing is that this approach kept me disassociated from my actual loss, but did not reduce my suffering, which in all three cases, my mom, my dad and Andrew became so unbearable that I questioned how I could keep going.  

With my mother and dad’s death, the keep going part was manic driven. I would pursue whatever I was doing with energy, persistence and with an enormous need for productivity. I judged my days by what I had done. As I mentioned, during my mother’s last days and death, I was working full time at Wharton, commuting 200 miles round trip to graduate school once a week, taking care of a toddler, writing my graduate thesis, and studying and taking my comprehensive exams for my masters and planning and attending to my mother’s funeral. The manic episode for me did not end with her death. I left Wharton with unbelievably high anxiety related to going to work. I knew I had to quit my job. 

By now, John was back at work, and he wanted to get on with our life, which for him included having more children. Somehow, that seemed like an okay idea to me.

MY MOTHER’S FUNERAL

My mother’s funeral was days of not sleeping, coupled with staying at my Dad’s with all my sisters and brothers. I was too terrified of my grief to close my eyes until after the end of the completely sad affair. John was still not that comfortable around my family—there were so many of us and we were used to a lot less law and order than John.  We were both a mess.

I was also having great difficulty at work. I could not concentrate. I was barely able to keep up with my course work for school let alone get ready for my comprehensive exams.  Life was one big anxiety laden day after another. 

What I later learned to call this mini psychosis was my death rattles. Each time someone close to me is dying, I develop a neurosis about work. I guess it allows me to bundle up my pain and project it onto the job, isolating it, much like the body walls off a bad infection in an abscess. It is an irrational place of pain and suffering just like grieving, except instead of grieving, I was completely distracted by job related issues, dreaded going to work and was continually terrorized by my generalized anxiety, 

MY MOTHER WAS DEAD

John and I were coping, but struggling and struggling to make things better without having any idea what was going on for us individually or as a family. Worse than that, we had no idea what might make things healthier.  It was a treadmill of anxiety, frustration and terrible unawareness and naiveté. 

At a friend’s house I got a call from John asking me to call him. My mother was dead.

I had been to see her the previous Sunday. John and Marnie went down with me to my parent’s three-.bedroom apartment just outside Washington, DC. Their house had been too much for my mother and they sold it, dislodging the remainder of my siblings, David, Kathy, Mike, Janey and John. Tom had left home to marry and have two little boys in quick succession. My two youngest siblings, Mary and Bridget would continue to live with my parents.

When we got down to their place, my mother was resting on the sofa in their little sitting room looking very tired and bedraggled. I took her by wheelchair into the kitchen where we could be alone and told her how much I loved her.

She said I thought you hated me. I said no, I loved you too much.  I don’t know how all of this works but I had been suffering for weeks as my mother was nearing death with absolutely no awareness of her suffering or my own.

I now believe that her death was simply too big of a loss for me to bear so somehow I kept her terrible illness and suffering away from my consciousness, as I endured horrible anxiety that I projected onto my job, my marriage my schoolwork etc.

FIVE CHURCH ROAD

We eventually found a house I loved and felt I could invest myself in financially and emotionally. We made a profit on our Baltimore home and were able to afford a home in an old Philadelphia suburb on a train line so we could manage with only one car. I was completely distracted by the logistics of the move and redecorating the new house on a budget of zero. I was completely absorbed.

John was usually quiet and we were not good at communicating our anxieties and distresses to each other. Instead, one of us would pick a fight when the stress got too high. That would let a little of the steam out offering only very modest and temporary relief. However, the boil was furious and growing. John was unhappy at his new job and wanted to quit but we needed the income from his job as I was not working and had not planned to work while we had kids at home.  Gratefully, he was able to land a new job. In the meantime, I was also looking for work in case John was not able to find something he liked.

When John got his new job he told me to stop looking—which I pretty much did but in late July, just a little less than a year into our life in Philly. I got a call regarding an application I had made to the Wharton School at the University of Pennsylvania a while back.  John said, “don’t take it we don’t need it”.  I thought about it and decided to try it

This would mean putting Marnie in day care, which I hated and imagined she did too, only to be told by her when I took her out after I had left my job at Penn that “Mom, I cannot stay home with you every day because she need to see my friends at school. That was the beginning of my realization that I need my kids at least as much as they need me and maybe more.

My mother was slipping into renal failure after years of hypertension secondary to diabetes. I began what would become or maybe already was a lifelong habit. I was unable to recognize or to register the seriousness of what was going on emotionally deep inside me. After all, my mother had been not feeling well since I was in my early teens.

My sister Kathy, also a nurse, would call me and read to me my mother’s' blood work over the phone. My reaction went something like this—Kathy is overreacting. She is always talking about Mummy’s health.  I would say, “It’s not too bad” and tell her not to worry. I only occasionally visited after my mother became so very sick and even less when we moved to Philly.

 

When John took the second new job in Philadelphia, I was still in graduate school studying for my masters degree in nursing at University of Maryland. So now, in addition to my 18-month-old toddler, our new home, John’s new job, and my new job, I was commuting at least one day a week to Baltimore, writing my thesis and studying for my comprehensive examinations.  This completely distracted me from my dying mother. Instead of being worried about her and visiting often, I was so absorbed in the day-to-day drama of my new responsibilities that I failed to realize that the source of my incredible anxiety was that my mother was dying and that everything else was merely protecting me from dealing directly with the horror of my mother’s impending death.

This manic craziness I would repeat again on the death of my father and my son. I had even less awareness for my Dad and slightly more awareness with Andrew, but certainly no conscious recognition that he would die. 

OUR FIRST SEPARATION

In the early nineties, shortly after I went back to work full time and Andrew was in late grade school, he came to us and said he did not want to go to school. He told us that a classmate was threatening to beat him up. We asked him who and he named a child who was half his size. Andrew was already bigger that most of his classmates and the child he named was quite a bit smaller. We tried the rational approach, comparing their relative sizes and assuring Andrew that he would be fine, eventually convincing him to go back to school and try to work it out with his friend. He was clearly scared.  We would not learn how traumatic this event was for Andrew until he was writing his college applications and used this incident to describe a difficult situation that he had dealt with successfully.

My return to work was a big deal for the whole family. I had been home with the kids since Lou was on the way in 1979. This was the first time I had not been readily available for the kids since my brief stint working after Marnie was born. Before that, I was working as nursing faculty in Baltimore.

I quit this job when Marnie was born to stay home with her. When she was about 5 months old, John got a job offer in Philadelphia in March of 1977.He left immediately and was living in an efficiency apartment in a neat old building right downtown on Locust Street. The room is fuzzy in my memory except for the wonderful Murphy bed.  This began a period of geographic separation for John and me, which would last for seven months, until August 1977.

This was new to us. We had been a couple since 1968 and married since 1972.

After John moved to Philadelphia, he spent his free time looking for houses for us. We did not know Philadelphia or anyone who lived there. The closest we came was that my parents had lived there when they were first married in 1946 and my oldest brother Dave was born there. We had no recent knowledge of neighborhoods --so John was looking everywhere. This move would be the beginning of a very rough period for us emotionally.  I did not realize it at the time but of course, we were beginning the separation from our parents and our childhoods that would be painful in ways that we did not be anticipate. It would not be simple, quick or easy and would never be complete.

May 10, 2014

 TOO MUCH PRESSURE

Everyone loved Andrew. He was so cute and cuddly. He was an easy baby, good sleeper and did everything he could to keep up with his sisters and our neighbors down the street, Nancy, six months older than Eileen and Katie, 7 months younger than Andrew,.  Our block on Church Road was full of girls—no boys would move onto Church Road until Andrew was in grade school. He was the darling of every teacher he had. He seemed to have natural athletic ability. He took to each sport he played (soccer, baseball, and swimming competitively) from an early age and always did well. There were two things about sports that Andrew did not like. He did not want to hurt anyone, or get into any fights and he did not like to be the focus of too much attention. In fact, it seemed without fail from his first swimming coaches through captaining his high school lacrosse team, Andrew did not want to be in the limelight. If a coach selected Andrew for special attention, Andrew would withdraw and sometimes lose interest in continuing to be on the team as with traveling soccer. He felt “too much pressure”.

I was at home with the kids until Andrew was seven when I started back to work.  This was a period of great adjustment for the family. I started out part-time but had increased to full time after only a few months. We were all struggling to find our new ways. The kids were going to after school club and hating it.  John felt I was abandoning the family. The truth is I was running away. I felt like I was being eaten alive by trying to satisfy the needs of my young family. While work was a legitimate way to claim back a piece of my life and the money I earned gave us more options, the job I took would become very demanding and ultimately consuming. We had an expression at our house that I believe I coined—independence building through abandonment. Of course, I did not know this at the time, but separation is the most difficult thing for schizophrenics.

More Tomorrow

"MARGE,HE IS PERFECT!”

May 9, 2014    "MARGE,HE IS PERFECT!”

I was moved from the labor room to the delivery room. John and our labor room nurse went with me. It was a well-lit, crowded room, filled with attending physicians, labor and delivery nurses as well as house staff from both the pediatric and obstetrical services, along with anesthesiology. It was a large room. I felt safe and taken care of. Andrew was born very soon and he was shown to us immediately. He looked wonderful. The roomful of specialists saw nothing to concern them on their quick external inspections but asked our permission to take him immediately to the neonatal intensive care for a more thorough exam. Reluctantly we parted with him.

As soon as I was cleaned up John and I rode the elevator up to the Neonatal Intensive Care Unit (NICU) and were led to a window where we were able to see Andrew in his isolette crib.  He looked huge at 7 pounds, 11 ounces next to his nursery mates, some of whom were around 3 pounds. Most importantly, he looked healthy—pink and active. The next day I was able to nurse him and he seemed good to me—alert, strong, already firm musculature. Andrew never had a typical baby’s body. All of his pediatricians remarked on his unusually mature, athletic body. I stayed in the hospital for about a week—getting progressively more confident that we had a healthy baby. When we brought him home to meet his sisters, family and friends, our next-door neighbor, Terry said, “Marge he is perfect”. 

IT WAS TIME

May 8, 2014   IT WAS TIME

. At my January 7^th visit, the test to determine Andrew’s lung maturity measured a level consistent with lung viability and the decision was made to induce labor the next day. My sister Bridget had come to stay with me to help with Marnie and Lou, so she was there the next morning when we awoke to a beautiful snowstorm that had blanketed the area. John did not trust our car or the local road crews to make the trip downtown. We live less than a block from the local train so off we went, not really thinking how well the sidewalks might be cleared once we got downtown. They were awful. The staircase at 30^th Street Station was not shoveled. John had to go ahead of me clearing one step at a time with his boot as we shuffled up two flights of steps and the four blocks to HUP.

Once I told people that I would be induced, women friends began to predict a painful labor—so I guess I prepared myself. Arriving at the hospital at six am, we were immediately admitted into a labor room. My memory is of a wonderful young nurse who bonded with John and me immediately. She, like me was one of nine children so we had great resonance. She prepared me for the coming induction by starting an IV and taking my vital signs the first of many times. She also said the contractions could be very strong. She was right, almost immediately after the Pitocin drip began I experienced very strong and long contractions—but interestingly, no pain or discomfort. The attending medical and nursing staff was surprised at how much pain free progress I was making. For my part, I was able to participate in conversations and felt very present to all that was going on. John and my nurse went to lunch around noon. Almost as soon as they left, one of the perinatologists, from the practice that was attending me, ruptured my bulging amniotic membranes. This was a practice of five physicians, and even though I saw and liked them all, my favorite was a Scotsman. He had been recruited from the University of Edinburgh and had only been in this country for several months. Nicely for me he was on call that day. After he broke my amniotic sac, the pain was excruciating and very quickly, I received an epidural anesthetic. I had determined after my last pregnancy that I would not wait to have an epidural as I had for Eileen or Marnie. I received immediate relief and things started to move fast.

A Chaplin—I believe Roman Catholic, visited and said he would be back after the birth, adding, “I don’t do the delivery room”. This took me back to my own catholic education where we were taught that a baby had to be baptized immediately if they were at risk for dying. How odd that this did not seem important to the Chaplin. We had long ago moved on from Catholic dogma and yet I was surprised at the priest’s nonchalance. 

More tomorrow

HOLDING OUR BREATH

May 7, 2014

Family and friends filled this time of my unwieldy body and unknown baby outcomes with concern and help. I look back on how much support we received from Sue and Peggy my next door and across the street neighbors.  My sisters and brothers, John’s family, food, babysitting, seems like people were also holding their breath with us as we sat with the unknown. 

We did not get anything ready for Andrew. I remember saying to my mother when Marnie was on the way—“I won’t wash any of the new things I received as shower gifts in case anything happens to the baby and I have to return them”. She was upset—do you know something you are not telling us? No, I did not. Maybe I had spent too much time in hospitals absorbing all that could go wrong. Marnie was born fine and I did use all the shower gifts. This time there was no shower—seems everyone was with us in other ways—kind of spiritually holding our hands, holding us together.

Then during the Christmas holidays, I noticed that I was urinating more frequently than normal. My breathing seemed to be getting easier. Something was definitely changing. Was Andrew getting better? I do not remember much else –but the lighter feeling was a relief.

On my next weekly visit to the ObGYN, I had lost almost 15 pounds and my blood glucose was normal.  My weight continued to fall and before I delivered Andrew, I had lost over 20 pounds.

Tests to monitor Andrew’s status, including several amniocenteses, continued on an outpatient basis. At this stage, the focus was on determining the ratio of certain proteins in the amniotic fluid, which indicate lung maturity. The plan was to deliver Andrew as soon as his lungs were mature enough, to minimize risk of respiratory distress. The overall goal was to  remove Andrew from  exposure to potentially fatal antibodies I was producing in response to the assumed maternal fetal incompatibility¸ even though nothing definitive was ever determined that would actually confirm that diagnosis.

The delivery was to take place at HUP, which had, at the time, an underground tunnel connecting it with Children’s Hospital of Philadelphia (CHOP). If Andrew were born needing pediatric specialists, he could be taken immediately to CHOP. A large team of pediatric and obstetrical specialists would attend the delivery to be on hand should any intervention be necessary.

More Tomorrow

WHAT WE KNOW THAT WE DON’T KNOW WE KNOW

May 6, 2014  WHAT WE KNOW THAT WE DON’T KNOW WE KNOW

Oddly, I think, that during my stay in the hospital, and until Andrew was delivered two weeks early on January 8, 1981 by a Pitocin induction, I never had a sense that he would die. Despite hearing repeatedly told that there was a 99% chance that he would not make it, that never seemed possible to me. John told me, after Andrew was born, that he had arranged with the undertaker to handle things. He felt that I was in denial and he did not want to upset me further so he stepped in to arrange for a stillbirth.  When he told me this later, I was  stunned—first that John and I were so far apart  in our sense of the outcome and second that John had acted alone so as not to upset me by confronting what he thought was my denial. Is it denial, or do we know more than we know we know? Does the body have an awareness of what is not always available to consciousness?

I continued to gain weight as Andrew took on more fluid while his body tried to dilute the impact of my antibodies. I was almost 200 pounds by Christmas. I could no longer pick up Marnie or Lou. I usually had to sit down and rest mid-flight when I was doing the stairs.  The slightest bit of exertion and I was short of breath. I could not lay flat without having a feeling of suffocation. My lungs were forced into an ever-smaller area as my uterus increased in size and began to compromise my thoracic cavity. I had only one maternity outfit that still fit me and the only shoes I could still get my feet into were my boots. 

More tomorrow

I WAS SHOCKED

 May 5, 2012

I WAS SHOCKED

I was shocked that people would actually consider  putting someone who had just been told that she was likely going to lose her child on the same ward—in the same room-- with newly delivered mothers who had their babies in the room with them.  I simply sat down on my suitcase and said to the clerk, “absolutely not. This will not do”. The clerk tried to reason with me. She patiently explained to me that this was the only room available.  But, I had already left my rational self far behind. Not at all calmly or patiently, I explained to her that if that were the case I would go home and await a suitable room.  With a much-distressed Jane, the clerk tried to insist. She would lose this one. I called my new OB and told him I simply could not stay on the postpartum unit—he agreed immediately. I do not know if he was reacting more to medical reasoning or to my irritated state but the empathetic tone was much appreciated.

 I returned the following morning with John and was admitted to the antepartum unit. My initial reaction was delight and relief. It was a private room in the new wing of the hospital. The kids were at home and well cared for. It felt like a vacation. In a sense, it was and the last time I would have to myself for quite a while. I spent the time cross-stitching, reading, and waiting for updates from the doctor and for John to visit. I spoke to Marnie and Eileen, who I call Lou, on the phone, but it felt like they were in another world--separate and somehow safe from the craziness.

 Days of tests and scans and more ultra sounds confirmed extreme fetal distress and the doctors told me there was a 99% chance that Andrew, who we had not named yet, would not make it. I said "what about a Caesarian?"  “No, his lungs are still too immature”.  He would not survive. We did not know yet that he was a boy. Even with multiple amniocentesis and ultrasounds, they either could not or did not determine the sex. At least they did not give us that information. The resolution of ultra sound images had relatively poor definition at the time. I believe that gender could be determined by amniocentesis but that it was generally not done. At least I do not remember being given the opportunity of knowing the baby’s sex.

I stayed in the hospital for 4-5 days for testing and observation. One test they did was a fetal echo-cardiogram to determine if Andrew had a cardiac defect that might be causing congestive heart failure—which could also cause fetal edema. His heart was strong and healthy. He would always have a great heart, in every sense of the word.

They also performed tests on me to try to rule out any maternal disorders like renal failure that might be affecting Andrew. Every test came back normal.   The only abnormal finding was slightly elevated blood sugar—gestational diabetes. This did not surprise me because my mother also had gestational diabetes during seven of her 11 full term pregnancies. She delivered nine healthy but large infants, and lost her last two. The eleventh was stillborn and the twelfth had a major cardiac anomaly and died after 5 days. Had that baby, named Patrick, been born today, he would have had a repair and most likely would have lived. The perinatologist did not feel that the gestational diabetes alone could account for the seriousness of Andrews’s edema. He did put me on a very low carbohydrate diet though, which I followed religiously.

More tomorrow

ANDREW’S FIRST ALARM

May 4, 2014

 ANDREW’S FIRST ALARM

Andrew rang the first alarm that all was not well with him on a fall evening in 1980. I had been in for an ultra sound that day. My enlarged uterus was term size and I was only about 30 weeks pregnant. So the  ultra sound, an imaging study, was done to confirm twins. My mind was spinning around that possibility. My daughters kept me busy. Marnie was four and Eileen had just had her first birthday. I was getting used to the idea that I would have three kids under four—now the possibility of twins brought me to my knees. John was out of town and the kids were in bed when I checked my answering machine for messages. There was a call from my OB-GYN’s office asking me to come in to the office the following day to discuss my ultrasound.

I remember wondering what the heck do they want to talk about— what else could my enlarged uterus mean except multiple birth. I called my friend from nursing school, Eileen, to ask her. She and I both drew a blank. 

Sitting across from the doctor, I listened to him tell me that the baby was swollen and they would need to do some tests to see what the incompatibility was. I flashed back to my maternity nursing text to a picture of a baby in utero with hydrops fetalis from Rh incompatibility. The baby was Rh + and the mother was Rh-. The mother did not share the Rh factor.  I also heard the doctor say that he wanted to hospitalize me immediately. Hey wait a minute I have two other children and my husband is out of town. He said, “I will drive you to the hospital”. This cannot be happening.  I cannot go to the hospital, who will take care of my kids?”

One phone call really took care of the details. My sister Jane got on a train from DC, I took the kids to the neighbors, and I went downtown to meet Jane’s train and to head to HUP, Hospital of the University Pennsylvania. John would be home that night. When I reached him by phone¸ he was concerned¸ in his quiet way¸ and wondering what was going on, was it serious?

Turns out it was.  My first stop was at the high-risk obstetrician’s (perinatologist) office, who, after a brief visit, wanted to admit me to the hospital.  My diagnosis was Maternal-Fetal Rejection Syndrome, MFRS —that mouthful literally means that my body was rejecting Andrew’s body because I was allergic to something in the fetal environment. This new doctor was not reassuring and said that it did not look good for the baby.

I had gained over 65 pounds and was a lumbering, exhausted mess. I listened to the clerk who insisted upon calling me by my first name. My fury at this unwanted intimacy was an example of where my energy would go over the next 28 years, circumventing my fear, my pain and my sadness. I was not discriminating with my rage--anyone could be and was my target. The unhelpful sales clerk, the aggravating customer service rep with a very special rage saved for John. We both used each other to act out all things bad in our lives, me, as a screamer and John as a passive–aggressive. The rage of impatience, coupled with a hair trigger, worsened by chronic sleep deprivation was a continuous feature in my mothering style. This same poor clerk, still calling me Margaret, led Jane and I to the postpartum unit in the old hospital.

More tomorrow 

WHAT ABOUT SUICIDE?

May 3, 2014

 WHAT ABOUT SUICIDE?

Schizophrenics are more likely to commit suicide than the general population. Ten percent of people diagnosed with schizophrenia commit suicide within 10 years of diagnosis; 15% within 30 years of diagnosis. It is harder to get a number for the rate of suicide in the general population. A 2006 report by the World Health Organization (WHO) states that nearly a million people take their own lives every year, more than those murdered or killed in war. WHO figures show a suicide takes place somewhere in the world every 40 seconds. Men are four times more likely to commit suicide than women are. It is the 12^th leading cause of death worldwide.

WHO also notes that the most common time of year for suicide is not the winter holiday season as many believed. The late spring and early summer are the most common.  Also by far the most common day of the week for suicide is Monday. Andrew died on Friday, May 29, 2009. But, here is the real mystery; NIH describes suicide as” a major, preventable public health problem”.  Is it preventable? Big question let me get to that a little later on.

I just looked these statistics up on Google and the numbers awe me.  I do not even know why I am talking about or concerned about statistics. Somehow, it represents my need to nail something down. My son is dead and I do not get it. How did this happen, why did it happen.   When I try to understand Andrew’s death, part of me thinks that life happens to us, we are just a victim of our genetics, our dominant neurotransmitters;  another part of me thinks we are definitely in the driver’s seat and responsible for our own success and happiness. I guess like with most things, the truth probably falls somewhere in the middle. Life and death seem complex and unknowable on some level—another part of me wants to understand it, define it, and fully live it.

Since his death, I often ask Andrew, when I speak, to him to let me know how he is doing, where he is. John says just the opposite. When I ask him, “Where is Andrew now?” he emphatically states, “He is dead, he is gone, there is nothing left of Andrew”.  I say "what about his energy, where does that go?" Remember our physics, energy cannot be created or destroyed. It just gets repackaged.”

 I was reading a review of the book, The Swerve in the New York Times, Sunday October 2, 2011, by Sarah Bakewell. It is the story of how a renaissance book dealer saved a text by Lucretius, who was born in 94 BC, went mad, and killed himself at the age of 43. He believed that everything was made of particles, “atoms”, that are infinite and eternal, no one made them, nothing can destroy them. He included humans as being composed of atoms as well, and all of us our connected. Death is not to be feared, it is only a release of atoms into the general pool for reuse. This belief led Lucretius to live his life in pursuit of pleasure and the avoidance of pain. He understood that life was transient and we should avoid the two basic human foibles; fear of what we cannot avoid and desire of what we cannot have. He recommends as an alternative an acceptance of all life as transient and a serious contemplation of the wonder of the world as it is. When I read this it resonated with me, but, then there was a catch in my mind that said,” I wonder if this is rationalizing in the face of pain.”  My answer is that it probably is a case of my trying to deal with the irrationality of life and that is a good thing. It allows me to direct my energies toward relationship with the world, others and myself in pursuit of understanding and enjoying my connectedness. Having said that, I still feel like I want to hold on to Andrew. While I understand that his suicide was a way of giving him (and me) a much-needed rest, his life is over and so is a part of mine.

More tomorrow

LOST SONS

2. THE LOST SONS

How and why does suicide occur? Does it come out of nowhere? Is it the result of bad brain chemistry? Is it the challenges of everyday life? For Andrew, I guess the trouble may be rooted in events much older than his first episode of schizophrenia.   As a little girl, people told me about sons who died young. My mother lost a brother in a car accident when he was four and she was eight.  My mother’s sister, Aunt Colene, told me of my great uncles, her mother’s bothers, who died young. My brother Mike, also tortured by painful daemons, died when he was 32 and I was 34. The cause of death was pneumonia, but he had been a serial drug and alcohol abuser for many years, starting in high school.

I wonder how many generations had lost sons. I read now that the DNA we are born with contains the impact of old traumas and transforms during life as we respond to our environment.  I wonder how all this works. My husband, John, experienced serious depression and delusions when he was younger. John’s father and my mother both suffered from clinical depression.  John’s grandfather was depressed. Therefore, we know there is a lot of mental illness in the family. In addition, there was a fair amount of alcoholism, which may have been self-treatment for depression or anxiety. 

            I asked John if the fact that we had a son who committed suicide surprised him. He said, “No, look at his gene pool.”  I guess my reaction was somewhat different. Different, in that, I see mental illness everywhere. Antidepressants and anti-anxiety medications are blockbuster drugs. Mental illness is also often masquerading as drug abuse, antisocial acting out, and poor performance in school or on the job. It just did not seem like our family was very unusual in terms of incidence of mental illness.  However, as far as I know this was our family’s first case actually labeled suicide and the first case diagnosed as schizophrenia in either John’s or my family.

More tommorrow

MAY IS NATIONAL MENTAL HEALTH AWARENESS MONTH

My son Andrew committed suicide in 2009.Two years after  he died I began to write a little bit each day in his memory and for my sanity. I have shared these writings with family and a few friends. One of my friends suggested doing something with this memoir to support Mental Health Awareness month which is May. So, I decided to post a section of it daily as a blog.  Remember this was written in 2009.

   

           Memorial Day

This coming Monday, May 30, 2009, Memorial Day this year, my son Andrew will be dead for two years. He jumped from a railroad trestle near our home. Andrew suffered from schizophrenia for more than ten years. My handsome, sensitive, athletic, caring, son was tortured by very painful delusions.  In the note he left, he told us he “loved us and he needed a rest”.  As I write this I am sad, and my recently recurring chest tightness is back. 

I find myself in flux. Still, feeling like Andrew is just away, but knowing that like my life before his death, he is gone. Reality is elusive.

Last night Eileen, my youngest daughter, came over. She looked flushed and I was agitated. She was to deliver a birthday present for our neighbor’s new grandson Liam. We were invited to their family party up in Vermont—we live in Pennsylvania. Eileen and I discussed driving up and staying in a hotel, but Rich, her fiance was not free to go. John, my husband was concerned about holiday traffic, and in the end, we all decided to stay home. 

My oldest daughter Marnie had already told us that she was going to the beach with her in-laws for the holiday weekend. I was crushed then and remain crushed now. My grandchildren would not be coming. Angus, three years and Gillis, 4 months are my utterly absorbing, lovely distraction—they stop the bleeding. Marnie knows I am disappointed—somehow she, who is so attentive and giving and loving has managed to really pick the one thing that right now seems to be the most awful—separating herself, and her family from me on this most difficult of weekends. Just yesterday, she questioned (to me) her decision to go-to separate from Eileen, John, and me on this anniversary of Andrew’s death. 

It is such a hard time. I am never going to see Andrew again. Somehow, I am just coming to understand this. I have finally been able to really cry with the terrible sadness of knowing that he is never going to walk in the door again, give me a hug, and tell me that he loves me. People have told me that I will still have a relationship with Andrew, but it will just be different.

There is something about this statement that rings true.  At the same time, it is also mildly infuriating. It is like saying after your house burns down, well you can still walk around in the ashes and remember what the house was like and what you did there and now you have a chance to rebuild it, you might even improve it. Add that bay window you always wanted, or upgrade the kitchen. Hey maybe even add a new room!  More tomorrow