I HOPE I DON”T LOSE MY MIND

Once home, things began to deteriorate. By Sunday, Andrew was vomiting and had ringing in his ears. We talked to the partner of his Charleston psychiatrist, who was out of town. When I told him Andrew’s symptoms, history and medication, He said there must be some mistake. The dose we were giving Andrew was four times the normal dosage. He told us to stop all medication. I went back to work Tuesday morning and got a call a noon. Andrew was once again psychotic and it got worse before it got better. We did finally hook up with a local young female psychiatrist. I think we were her first private patients. Her diagnosis was the same as the admitting diagnosis in Charleston—Bipolar, to which she added with schizoid affect.   She is very solicitous, responsive, and helpful. I think she takes a big picture approach, that is, a family system approach. I felt very fragile and have not been sleeping well. Marnie and Eileen have been great. I hope I don’t lose my mind. I want to help Andrew find his way.

These last few words seem to sum up the last few years. I am amazed at the redundancy of the entries.  

LIKE A MORGUE

What a week, visiting Andrew at St. Francis. Such a range of feelings. I was devastatingly angry with John and Andrew. I was vicious to John and also found room to be loving caring and funny. It really is quite a dream. 

The cast of characters, the nurses, the psychiatrist seem like out of a novel. Read that One Flew Over A Cuckoos Nest. Not really quite that stereotypical.

Andrew improved during the week on massive doses of Depakote and we broke for home on Friday morning. It was a week from hell. I could not go into the Citadel to pick up Andrew’s things so John went alone.  The Citadel staff was nice but it felt to me like going to a morgue. I was angry and very sad and kept trying to put things into perspective. John was a soldier through it all as I repeatedly accused him of being insensitive, uncaring etc. 

August 28th through 29th 1999

August 28^th through 29^th we moved Lou into University of Maryland where I lost my temper with her and then moved Marnie to Kathy’s (my sibling a year younger that me)where she would spend the summer and them move into a place of her own in DC*. It was hot and heavy. On Saturday, we went to Jane’s (my middle sib and middle sister) for Bridget’s (my youngest sibling) birthday.

I picked up messages on our home phone from my sister’s and the Citadel had called to discuss a problem with Andrew. I tried to return the call but got nowhere because it was Sunday.  Then upon leaving the party for home, I checked messages again with a sick feeling in my stomach. This time I got through and was told that Andrew was being given an administrative discharge for failure to comply with the fourth class system.

 I asked a few questions and quickly discovered that the disrespectful, disruptive, unmanageable behavior being described was not like Andrew. I was talking to the medical officer and suggested that Andrew might be experiencing a psychosis. I was quite upset and cried briefly. 

Then I spoke with Andrew and I knew he was delusional. It was and is very sad but I remain hopeful that the outcome of this will be a new awareness and hopefully new skills as well.  Anyway, we turned around on Rte. 95 and headed south. We drove through and arrived in Charleston a little after midnight. By the time we arrived, Andrew had been admitted to the psychiatric floor of St. Francis Hospital. 

My heart is heavy as I reread this.

* text in red added to hopefully clarify this post. Sorry for any confusion

August 1999

August 19^th John, Andrew, and I left for Charleston—beastly hot. Andrew was a bit withdrawn and nervous but not an inordinate amount. We had spent the last two weeks buying linens, socks, towels, toiletries etc. We struggled to get a box packed and mailed. There was a lot of me trying to stay out of the way but being concerned because things were not being done, but in the end, we did get it shipped. Charleston was beautiful—very hot. The Citadel seemed okay—what Andrew was looking for—a lot of structure and small classes. But alas, it was not meant to be.

 We left feeling comfortable with a little nag in the back of my head, and even had a letter from Andrew mid-week that sounded good.

DAILY PAGES Friday, September 10, 1999, 4 PM-1

Well I just got off the phone with my youngest sibling, Bridget. She often calls me when she is on her way into the office. While I was talking to her, I glanced down at my turntable bookcase and saw a spiral binding I had not noticed in my earlier searches for my 1999 daily pages (my daily or not journal entries). I opened it from the back to find odd notes and lists of things to do. The middle section was mostly blank pages with a few doodles here and there. Then I flipped to the front and found the opening page dated Friday, September 10, 1999, 4 PM. I rarely put this much effort into dating my entry often not even including the year. I will reread it as I enter it here. It is long so I will split it up into several sections. The journal

Well this has been quite a summer. It started out fast and furious with weddings and Andrew’s graduation and party. Then a trip to Duck, NC for Memorial Day. We flew. It was great. Andrew’s Prom—he looked wonderful and so did Seana. We took many nice pictures. Then I went to San Francisco with Katie from work.  It is a beautiful city. We took a couple of walks and I drove to Sonoma—very beautiful.

John and I had our 27^th wedding anniversary and I can’t remember if we even went out. It seems like after Andrew’s graduation we just stayed home on the weekends and ate at home outside on the deck. It was hot, hot, hot, but really a nice summer. Then in August, we went to St. Andrew’s in New Brunswick, Canada. It was a nice week of all of us together. 

TRYING TO REMEMBER

Andrew spent the summer working for a lawn maintenance company. He wanted to be outside doing something physical to toughen him up for the rigors of military life. Additionally he had begun to do pushups and sit-ups as well as to run every day.

For my part, I did notice that as the summer advanced I was getting more anxious. It felt like the anxiety was about Andrew’s readiness for military rigor. I kept quizzing him as to whether or not he was doing his exercises and had what he needed for school. I feel like I was making him more anxious that he might already have been by constantly monitoring his activity. I wonder now if my anxiety may have been related to a premonition of what was coming or part of it. I suspect both.

We drove Andrew to Charleston – this part is a little blurry. What I do remember is that we had decided to take our time coming back since we were empty nesters there was no reason to rush home. I just looked back over my daily pages and found that I had written nothing from around March of 1999 until March of 2000. It still feels blank right now. I guess I did not write about what was going on at the time Andrew first got sick because in me there was so much turmoil, devastation and emotional chaos

I just read some new findings on neurobiology declaring that each time we retrieve a memory it is different. Of course we are different and the altered memory is reflective of what we have lived and stored and our ability to remember.

 So I understand that what follows may not be an accurate picture of what actually happened. I will still offer it as the best I have at this time. I am sad that I did not capture  more. I also remember writing for quite a while at the beach the August after Andrew died and I cannot put my hands on those notes either.

YET MORE CITADEL

.

Getting back to Andrew and the Citadel, and looking back on this time, I realize now how much anxiety I was having. On the surface, I was looking forward to being an empty nester. Marnie was already living in DC and working at the Federal Reserve. Eileen was a rising junior at University of Maryland and spending her summers living and working in DC to meet her residency requirements. Andrew was also ready to get out of the house. He often said he hated being the only focus of parental attention and often chided us to take care of ourselves. To me he would say, “Talk to Dad—he’s your husband”.

I had started seeing a Jungian analyst and attending a Jungian seminar group in 1997. I was reading and studying about my conscious vs. unconscious self. I felt a great deal of satisfaction in beginning to understand how much of my life was directed by aspects of me that were outside of my cognitive sphere. In addition, I was learning how to bring more of myself into the bright light of consciousness. That was the good news. The bad news was that I became acutely aware of how little insight I had into how our family dynamic worked. What were the implicit goals? Explicitly, with Andrew getting ready to leave for college, my life was changing and on the surface, I longed for the freedom I expected to find with everyone out of the house.

 I say on the surface, because I am unclear about how my needs merged and conflicted with my children and their needs. I did not then and I do not now completely understand my feelings or needs. I am frequently bouncing day-to-day, acting out my feelings, displacing their source onto my near and dear.

My feeling at the time of Andrew’s acceptance into the Citadel was joy. I thought, “Great; this is just what he needs”. I did not really consider what was happening to me. Some part of me believes that I was not ready to let him go. If this was true, it was unconscious at the time. I felt like I was more than ready to be an empty nester. 

MORE CITADEL

Last night John and I went out to dinner in celebration of our thirty-ninth wedding anniversary. As we sat with our drinks, looking out over The Schuylkill River it was quiet and peaceful. We had gone early so we pretty much had the place to ourselves. I was thinking about what I had written above and wanted to check out what John’s perception of Andrew choice of the Citadel.

 I asked him if he had any misgivings or negative predictions. He said, “No not at all, as a matter of fact I was proud of him for picking the Citadel. I knew it would be a harder, a more  physically and mentally taxing approach to college life than a regular school and I felt like Andrew knew that and selected it because he felt the Citadel  was about  taking life and school more seriously.” 

DETERMINED TO BE SUCCESSFUL

Andrew was accepted into the Citadel as well as all the other schools to which he applied.  I was glad when he made the Citadel his choice because it seemed like he was following through with doing what he thought would give him the greatest opportunity for success in college. I was worried about the physical demands, particularly of the first year. We had heard about the hazing and rigor of their military training. On the other hand, Andrew had played athletics all of his life and was in good shape. Even so, John and I thought the boot camp atmosphere would be tough for anyone.

After Andrews made his commitment to the Citadel, he also made a decision to spend the summer getting in great physical shape with a regular running regimen and doing many push-ups. He was determined to be successful.

DOING THE RIGHT THING

Let me say a little bit more about Andrew wanting to do the right thing. He was always motivated. He always set out with the highest expectations of himself. He was often saying, “ I just do not know what is wrong with me, each school year I am determined to really do well and something just gets in my way”. I wonder if this was the early symptoms of what was to come.

I believe one of Andrew’s biggest frustrations was that he was unable to actualize his own expectations of himself. As he got older and had more and more cognitive setbacks, he was less and less satisfied with his life. I believe the delusions he suffered, while painful, may not have been the worst part of the disease for Andrew. I think his real anguish was his realization that his cognitive abilities would not be getting better and were worsening.

Let me get back to Andrew’s college application process. He requested applications to several colleges but really focused on his application to the Citadel. The essay question asked the applicant to discuss a personal challenge and how they had handled it. Andrew told us he would write about his experience of being afraid to go to school when he was in elementary school.

Of course, we had no idea that this was an early episode of the painful paranoid delusions that would haunt him all of his adult life, and how little control Andrew really had over his neurochemistry.  When he was talking with us about this incident from the fifth grade, I felt anguish over his still present pain when recalling this event. I felt proud though that he was bringing it up and dealing with it. This seemed to me to be a sign of Andrew’s maturity and insight. The hardest part of this to me was that this disease defeated a very motivated, well-intentioned person who up to the very end of his life was trying to figure things out and do the right thing. 

THE CITADEL

Let me get back to Andrew’s high school years. During his junior year, we started talking with Andrew about college. I thought it was important that he go away to school and we of course had no idea at the time how provocative separation is for persons with schizophrenia.

Andrew flew down to Charleston to visit the College of Charleston where he had a friend who was attending as a freshman. He also went to look at the Citadel. This was pre Iran Iraq and the Vietnam war was a distant memory. I thought the Citadel might be a good idea. It might give him structure.

When Andrew came home from this college visitation trip, he told us that he liked the Citadel better. He said that all they were doing at the College of Charleston was eating pizza and drinking beer. He did not feel like that would work for him. He said he felt like he needed discipline. 

Later people would wonder why he ever went to the Citadel-what with all the hazing and tough guy military stuff. I think there was a feeling on the part of some of our friends that the Citadel culture and environment were somehow the cause of Andrew’s first documented psychosis. After Andrew was diagnosed, several psychiatrists would tell us that while it is hard to determine the trigger points for psychosis, leaving home often correlates with the onset of overt symptoms of schizophrenia. Of course, we will never know. 

What I do know was Andrew wanted, always wanted to do the right thing. He knew it was hard for him to have study discipline and he wanted to be successful. He picked the Citadel to help him get there. 

Self-Medication

By the time Andrew was in high school, he definitely was using pot to manage his anxiety. I was completely unaware of this. I thought he was remarkably abstinent from drinking, and since booze was definitely the drug of choice in our crowd, I never really considered that he might be using marijuana. Nor did I understand how dangerous hallucinatory drugs are to individuals prone to delusions.

Despite his use of marijuana, Andrew seemed like a normal teenager. He watched a lot of television-so much so that I considered the TV his drug of choice. He also had many friends—Marnie and Eileen used to say that Andrew had the best social life. There were often kids at our house –both girls and boys were attracted to him. As I said before, Andrew was the peer elected captain of his lacrosse team. Andrew was very accepting and accommodating to all types of people. He had friends from a fair number of typical high school cliques—athletes, academics, insiders and outsiders, girls and boys. Andrew was a B student despite his complaint that he could not study like Marnie and Eileen. He did not spend much time on homework but seemed to get his work done. My guess is that Andrew was probably very smart but already experiencing some of the cognitive limitations associated with his schizophrenia that would continue to worsen.

I know that this frustrated him a lot. He felt smart but had difficulty taking on new information. In the end, it would be almost impossible for him to learn new skills. The anxiety associated with not being able to learn on the job literally terrorized him. In the year before he died, he would often call me from work, beside himself with frustration, anger but mostly fear that he would be fired because he could not keep up with the training. This would eventually be a key factor in his decision to end his life. His psychiatrist told us that it was the cognitive deterioration that was most upsetting to him. While we were aware of this, I did not appreciate what this must be like.

I know that the last week that Andrew was alive he found out that a friend of his was having a baby. I said that I wanted that for him. He screamed at me DON”T YOU THINK I WANT THAT TOO? One of the most painful exchanges he and I ever had. I cringe right now as I write this. What a loss. 

LACK OF AWARENESS

This was late April early May—outside everything was starting to bloom. In addition to commuting to New York every day, John and I were rehabbing an eight-bedroom house at the Delaware shore. While it was a resource intensive project and should have put me over the top, it seemed to me it was the only thing that held me together. I could escape their mentally as I designed and decorated in my head and then in reality.  Andrew came home to recover after the final surgery just as the beach house was almost ready for occupancy.

 I finally went back to work—New York-- to make one presentation at the urging of my boss and it was a disaster. Instead of having compassion for myself that I was depleted from my manic pace and still had a sick son at home that I left on his own to return to work, I blamed myself for my lack luster presentation and was filled with shame and a feeling of being worthless and about to be thrown away.   I was an anxious nervous wreck and I never should have allowed myself to be talked into going—but I HAD NO AWARENESS OF HOW I (again, I unconsciously typed these capital letters here) was making my life a nightmare and no idea how-to stop the roller coaster. My only skills seemed to lie in the direction of making the ride faster, more hectic, or more exhausting. 

A SECOND SURGERY

 I did not go back to work for over a week—maybe as many as 14 days. I was a complete and total physical and emotional wreck. I went to the hospital every day, bur Andrew was not getting better. He had a fever that he could not shake. He lost 10-15 pounds and was listless. He was also developing Herpes lesions on his shoulder as his resistance lowered.

They ran some IV antibiotics and eventually did a CAT scan. The scan showed a --sub-phrenic abscess--a sac that forms around an infection and floods the area with white blood cells trying to wall off and overcome the infecting bacteria. The sac with the walled off infection fills with dead white cells—puss-- and is very difficult to reach with either oral or intravenous antibiotics. Another surgery was required to remove the abscess. Andrew had his second operation within a week. 

Andrew’s Appendectomy

In 1993 I was traveling for work to a big meeting to launch a sales force I had sold to a large pharmaceutical company in northern New Jersey—a couple of hours from our house. John called me early in the week to say that Andrew was not feeling well. His stomach was upset. I said well maybe keep him home from school. The pain got worse as the week progressed but the pediatrician said it was probably a stomach virus. By then I was coming home the next day and said I would take him to the pediatrician when I got home.

I came home late that night to find Andrew lying on the sofa saying that he felt a little better. He had a fever but was comfortable so I decided to wait until the next morning to take him to the pediatrician. I was exhausted, and of course angry, that Andrew was sick. In my view of the world at that time, you only got sick because you were acting out an emotional problem, or better yet not acting out but being overcome by it. I marched him into the doctor’s office, telling him to step on it. 

Once inside we were seen quickly and the doctor determined Andrew to be a surgical emergency. His rock hard abdomen, history of fever with intense abdominal pain, followed by some improvement of the pain was quickly diagnosed as a ruptured appendix. We went immediately to the hospital where Andrew was taken to the operating room for an emergency appendectomy.

TRYING HARD

Unfortunately, for me while I was learning a lot about living and loving and being centered I was slow to incorporate my new learning into new behaviors. Integrating newly found knowledge and tools was a much longer more arduous process.

My first and most energetic reaction was always to try out my newly found knowledge on some hapless family member or friend. One of my good friends told me, “If you keep this up no one will want to be near you”. I managed to piss many people off, but somehow for the most part, they stuck with me. This included my family and especially my darling Andrew who understood that I meant well despite my often heavy-handed approach. Andrew was always intuitive. If I came home upset or angry and started in on him, he would often say, "what are you really upset about?’ ".   If I am honest though he took my rage on the chin, as did most of the family. 

WHAT WOULD MAGGIE SCARF THINK

Once I got a call from Andrew’s nursery school teacher. She wanted to report that Andrew had told her that there was fighting at home. This was hard. I was trying to have the perfect family. Wow! Whatever we were doing it is upsetting Andrew probably more than us. Knock it off. What would Maggie Scarf think?

 I remember reading her book about family systems and taking the diagnostic questionnaire at the end to determine at what level our family was functioning.   It was very important to me to get a good score. To believe we were doing things well. We started around this time to see a marriage counselor. I remember saying to a friend of ours at a dinner party that Lou was losing her hair in places and I wanted to take her to see a child psychologist. His response was "go yourself". Those were wise words

ANXIETY

In the back of my mind, I was always a little anxious about Andrew. I wondered than as I wonder now how much of my own anxiety and that of the family was acted out by Andrew. It seemed to me like John and I would often be talking about one of the kids problems when we should have been talking about our own issues individually or as a couple. I do not know if we are a typical couple/family or not. We certainly had our fair share of disagreements, verbal fights, as we dealt with the issues of life including the death of my brother Mike when he was 32 and I was 34

John and I tried to work on our marriage by going to counseling and getting away as a couple once or twice a year. I usually blamed John for everything that was wrong and wanted him to change to make me feel better. By the time, I was 48 I was seeing a shrink every week and getting some insight into my own issues. I was still quite angry and agitated some of the time to much of the time.

 It was about now that I was coming to understand that my manic approach to life and life’s issues-translated as be as productive as you possibly can no matter what. This was often leaving me exhausted and an exhausted Marge is an irritable angry Marge. 

Simply put, I was sometime not very pleasant to be around. I was trying to take good care of my family without taking good care of myself-or even knowing what I needed. I was often filled with anxiety for the family. Maybe not more than typical –maybe less than typical, whatever that is. In other words, living life, some days enjoying life, while sometimes being anguished by it. 

ANDREW IN SCHOOL

Andrew was always an average student, but someone that teachers always felt could do better. Andrew wanted to do better and wore his sisters Olympics of the Mind tee shirt for his 4^th grade class picture. He said to me, you know Mom, every year when I go back to school from summer vacation I vow that I will do really well in school but something happens to me and I am not able to do it. 

He never got bad grades until middle school when the teachers called home and said they wanted a conference. John and I talked to Andrew to see what the problem was and he said I do not know. We helped him put together a plan like the one we had for Marnie when she became overwhelmed by schoolwork in the fifth grade. Andrew presented the plan and the teachers were impressed. Despite this, Andrew was never able to really shine in academics even though he felt he should be able to.  

He did shine socially and athletically. He always had a wide circle of friends around him. His sisters often would complain that Andrew had a better social life that they did. He was a natural at any sport he tried and played a sport every season. What he did not want was to have a lot of pressure from coaches. His performance would suffer whenever he got star attention and the next thing we heard was that he wanted to quit the team. He was well-liked and well thought of by his classmates and they chose him to be captain of his High School Lacrosse team. 

THE TRAIN

When I first started as a DM, I was told that my job would still be part-time but it became progressively less part-time as I became more and more involved with this small agency who continued to promote me. I was initially traveling between Washington, DC, Wilmington Delaware, Baltimore, and Manhattan. Then I was made a Regional Director and began flying or training somewhere different every day. Fortunately, most of my travel brought me back to Philadelphia by the end of the business day. 

By 1991, I was a Vice President and was commuting daily from Philadelphia to Manhattan by train, a five and one-half hour round-trip commute. The trip consisted of driving to 30^th Street Station in Philadelphia, parking, walking or often running the two blocks, catching a train to Penn Station New York and then walking 10 blocks uptown and 5 blocks across town to my office next to Grand Central Station. I was more manic than ever. How did this happen.

My children and husband did not like it. I was charmed by the fact that I was being recognized as a highly capable person, I had escaped from nursing which was never a good fit and I was making more money than I ever thought possible. At the height of my New York career trajectory, Andrew had his first episode of paranoia, which I mentioned earlier. In discussing this with my shrink after Andrew’s death, he pointed out that the first episode of schizophrenia is usually experienced after a separation from the significant caregiver. Andrew’s first episode would of course go unrecognized by us for what it really was and for what it might mean for the future. If we had known then, could we have intervened for treatment that would have changed the course of his disease?

DISTRICT MANAGER

I started out part-time in 1987 as a flextime pharmaceutical representative. I really had no idea what I wanted to do and just started looking at the help-wanted ads in the Philadelphia Inquirer. I knew I did not want to do any nursing and I did not want to do anything that required weekend, evening or nighttime hours. Friends had often told me they thought I would be good at sales. Turned out they were right. My new job was calling on Primary Care Physicians in their offices to promote over-the-counter products. I did this work part-time working one to three days a week around my kid’s school schedule. Andrew was in the first grade, Eileen in the second and Marnie was in middle school.

While I was only part-time, I brought the same intensity to this job as I had to my manic sewing. We were paid on the number of calls we made per day and I was driven by my need to be productive so I was posting strong numbers from the start. Even though I was always making my quota, my success probably had more to do with my nursing background than anything else did.

Not long after I started, the agency I was working for got a contract for a sales force to promote a new Intrauterine Device (IUD). The client wanted only RN’s for district sales managers. They wanted managers with strong clinical backgrounds to respond to doctors anticipated safety objections because we would be selling the product in a very litigious environment, to customers who had recently been through the Delcon Shield crisis. The Delcon Shield was an IUD with a malignant history. It caused countless incidences of patients suffering from severe pelvic inflammatory disease, infertility and even to deaths with the attendant lawsuits. Therefore, with three months of sales experience and no sales management experience I found myself a District Manager (DM).