Living Well with a Bad Diagnosis - Lung Disease

Saturday, July 31, 2010

Twins+Dad+Mom+Bill+Marie+ Sandy

Photo of Bill, Marie, Dad and Mom

The twins. How am I ever going to be able to describe them? Ruthe and Bette. My dad’s youngest sisters.

They were the 4th and 5th children in the family with no money during the Depression and it is believed that they did not get enough oxygen during their birth. That is really the only explanation anyone had, as the other three children were whip sharp, active and creative people. Not the twins.

They graduated last in their class in high school then worked at minimum wage jobs. They were very pretty but neither ever went on a date. Wait, Bette went on one but he tried to get “fresh” and she was home within the hour. They lived with their mother until she died. Mother did everything for them. Shortly after she died, their brother Bill (child number 3) gave them a condo in an exclusive area of Palm Beach and they formally retired, though brother Bill never told them that he totally funded it. He was such a good brother.

My mom knew the twins in high school. When they tried to join a sorority – popular in those days – the twins were denied. They were mocked. This made my mom very angry so she, her best friend Marie and the twins started their own sorority. They had certain shoes, skirts, and everything else just like the other sororities. They felt very special.

This kindness was to come back to my mom a hundredfold.

She and the beautiful Marie would hang out at the twins’ house and have a ball with their mother. She was such fun and my mom adored her.

Brother Bill was injured in the war in the South Pacific and was eventually sent home. He and Marie met and fell hard for each other. They made a very handsome couple.

Dad arrived home from the war and surprised the twins while they were working in the dime store. One of them happened to look out the large window and there he was waving at them. Shortly afterwards, my mom was invited by one of the twins to go to their house where my dad just happened to be at that moment.

Her first words to him were in French – later her major in college - since she heard he had been in France. “Parlez-vous Francais?” He immediately replied in very good French, “Oui, je fais.” And that was the start of it all. She said the first thing he noticed about her were her cute knocked knees!! Being a legman, she couldn’t imagine that he could think they were cute since she hated them.

So they met. The end. For them both. The photo above was taken at her Senior Prom. Mom was only seventeen-years old and dad would not even take her elbow crossing the street. She was underage! On her 18th birthday, not only did she receive a beautiful bracelet from him but also he held her hand and she said that was glorious! Mom was barely nineteen when they married. On their wedding day, dad’s mother said to my mom, “He’s yours now! Good luck!” and laughed! She and mom enjoyed a lovely relationship for the rest of her life.

Bill and Marie also married. He was eventually to become an extremely wealthy businessman but when they were married, he was just beginning his career. Marie wanted to move to Florida but he had just landed a great job. She became unhappy. They divorced.

Bill loved her until the day he died.

Marie eventually re-married and had a daughter, Sandy. What we recently have learned is that she suffered from clinical depression. Mom never saw this when they were kids but said, looking back, it made sense.

A few weeks after her daughter’s wedding, Marie took her own life. She was 47-years old.

When we were in Chicago in 2007, mom and I visited several graves of relatives and friends. We could not find Marie’s. We continued to search for it after the trip. She and mom had made a promise to each other that the last one alive would put a white orchid on the other’s grave. They were very expensive in those days. This promise had not been fulfilled and nothing worries mom more than unfinished business. While we searched, Bill would call to ask if we had found Marie yet. He made me promise to let him know the minute we find her but sadly, he passed away suddenly.

We did not know the last name of Marie’s daughter Sandy, but we knew that she had married. Remember, my parent’s had moved across the country and it was clearly impossible to maintain the friendship after the divorce.

Just months after Bill died, I stumbled into a web site called: find a I was doing computer searches. Mom was searching on her computer. She got a hit. She found a newspaper article announcing Sandy’s engagement. We finally had a last name!

Within seconds we had her phone number. Mom phoned. Her former husband answered. Thankfully, they had children together and still stayed in touch with each other. Mom explained who she was and they had a marvelous chat. He gave her Sandy’s number.

They finally connected. Sandy was so young when her mother died and she really didn’t get to know her as a person. I think mom has been able to answer a lot of questions Sandy had about her mother. She filled in some missing pieces. She told Sandy great stories about their childhood together and even about Sandy’s grandparents.

Sandy and John flew out to meet us. I hugged her and said, “Do you know how many years we have been looking for you?” We talked for hours. Mom has opened her heart to her.

The white orchid. Mom sent a check and Sandy promised her that she would place the promised white orchid on Marie’s grave. When mom got the photos, there were two orchids. One was from Sandy. What we didn’t know is that Sandy had been so traumatized by her mother’s death that she had never been to her burial site. Sandy told me that she brought her daughters with her, for the first time. Meeting my mom and learning about her mother though my mom’s eyes may have settled many things for her.

I can almost see Bill and Marie arranging it all from heaven.

Friday, July 30, 2010

Searching for a New Normal

The man who was in the horrible car accident in Oregon is having problems. Michael came home one day and asked it I would talk with him. Mark is having problems sleeping and is really screwed up mentally. He can't settle his mind. The physical damage is beginning to heal but depression has moved in.

It may be time for the talk. He is going to be a challenge. We will talk about everything we have discussed here in this blog including: how he wants to be remembered by his family, how he has the choice on how to deal with it all, how to not let his mind wander about all the bad stuff (night terrors, I call them), not to worry about something until you have proof to worry, and to find someplace where he can gather his strength. But most of all I want to tell him that suddenly he will appreciate wonderful small things like the sunshine on his face, a beautiful moon, the smell of the garden, a perfect song, and his family’s laughter.

So, with all that in mind, we dropped in to see him on the weekend. He was pacing like a cat and his wife, Marianne was frustrated with some family members. They was due –or thrown on them – with no understanding that Mark is really in pain and not doing well. He looks good. No visible scars. People think he is fine. Boy, do I understand that!

Michael talked to him in another room for a while I spoke with Marianne. Mark was saying that he just wants to be normal again and have his life back. Michael was able to tell him that it will never be the same and that this was a life-changing event. He will have a new normal. He seemed to understand what Michael was saying. He is struggling with depression so Michael is calling him almost every day, which his wife told me has made a huge difference.

She and I talked about some of the things I had planned but Mark really is not ready to hear any of it. Too soon. It is not settled in his body yet. He is almost in denial that anything is wrong and angry that his diabetes is now troublesome because he can’t work out.

He is just now sleeping for the first time since the accident on July 1st with the help of vicodin. Marianne told me that he had two punctured lungs; a broken cleft palate, a fractured scapula and pneumonia. He also spent many days on a ventilator. He really should not have survived the accident and is only alive due to a quick response and really good medical care, which is quite shocking since it happened in a very small city. She was telling me that the hospital called in a nurse while he was in CCU as she is their expert in bad cases. Marianne said she was like an angel and she totally trusted her. When she told Marianne that Mark was going to be fine, she was the first to do so and Marianne believed her. For the first time, she felt that he was not going to die.

Life is never going back to the way it was before the accident. It is up to him if he can actually make his life better than ever. It is going to take time. It is going to take some work.

Thursday, July 29, 2010

One of the Best Moments of My Life

We always wanted William to have the same childhood experiences as we had but times have changed. No longer was it safe to wander alone as a young child. No longer was it okay to be out of the sight of a parent. The freedoms we had no longer could happen. It is sad.

What we did do is to try to expose him to a lot of the arts and surrounded ourselves with a huge variety of people with vastly different interests. We also traveled but not as much as before his birth. There just wasn’t the money as my staying home limited our income.

After he died, we drove Papa Joe’s car to his daughter in Washington State. William was maybe 8-years old. We spent the night at a Hilton in Eugene, Oregon with a beautiful pool and outdoor hot tub. After a refreshing swim, we all hopped into the warm waters. William, lounging in the spa and looking so at home, said, “So, this is Oregon.” Michael and I both laughed and said, “Honey, you’d better do something for a living that affords you the finer things in life!”

The best moment of my parenting life was when William was around 22 or 23. We were in the parking lot of an In-and-Out Burger, of all places. They are not in his area and he really was looking forward to having one. On our way in, he said, “I realize that I didn’t have a normal upbringing.” I paused and said, “You just now got that? We never wanted normal for you.”

He went on to say that he may have been raised in the suburbs but we did not live a suburban existence.

He got it. He got that we tried to show him a bigger world that was his for the taking. We wanted him be comfortable in any circumstances: huge concert halls of major symphony orchestras, museums, fine restaurants, foreign countries and other languages.

He also said that we were great parents. I will remember that for the rest of my life. It all happened in a parking lot while walking. I do remember getting a bit teary. Still do.

Wednesday, July 28, 2010

Breakfast Through Lunch

It is so nice to see dear friends. Makes for a special day. My friend Cynthia came for breakfast Tuesday morning. I missed her birthday because she was back east visiting her mom. We have known each other since William was in kindergarten almost 25-years ago. She has two great kids – one was on the original team for the iPhone at Apple after Stanford and the other was just awarded his PhD at Cornell University after MIT. She showed me the photos of ceremony. Both sons are very funny, very nice adults.

She and I shared a job at William’s school then I went to work at the school where I got sick. I heard they were interviewing for an aide in the 6th grade and I highly encouraged her to apply. They taught a yearly unit on Greece and I knew that she liked to read and speak Greek. A perfect fit. Her oldest son had just started at the school and I was carpooling with him. She had planned to volunteer her time at the school anyway, so she applied for the job and got it.

Side story – Her oldest son was not chatty in the morning during our carpooling days, so I would play tapes including one my dad made of Overtures from many musicals. One was Ethel Merman singing, “There’s No Business Like Show Business.” He started to laugh and asked who was singing. For months, we both did Ethel Merman impersonations going to school. I giggle just in reliving the memory.

As a very bright woman, Cynthia threw herself into learning about gifted children and eventually worked her way up into teaching. Years later, the school went through a huge upheaval – the head of the Middle School was accused of abusing children, the Head refused to fire him, the owner refused to fire the Head then eventually, the entire Middle School staff quit, the Head was fired by the board and the board fired the owner – and Cynthia was hired as the new Head of the Middle School. She beat me by a few years. After I was appointed Head of the music program, she looked at me and said, “Well, we finally made it to the top. Took us both longer than we thought!” We had been bothered by how some structures were not in place at the school and saw the need to make it a bit more organized when we had arrived years earlier.

While Head of the Middle School, she made the decision to move the music department from its beautiful room with 4 balconies just outside the library in the mansion to the portable up in the Middle School complex. They wanted to have more of an open campus and not two separate and distinct ones – Lower and Middle schools. Since all the kids took music classes, it would bring the entire student body up to the Middle School campus. Because I got sick working in the portable, she feels very guilty about moving me into it. I had to tell her that I no way blamed her for my illness.

Cynthia was a runner for years. She is preparing for her hip replacement at my university hospital in early September. She is in great shape and should do well. As I work out in the other rehab, I talk to many people who have had hip or knee replacements. Every hip replacement person says they wish they had it done sooner. No regrets. I can’t say that of the people with knee replacements. There always seems to be pain afterwards.

So, she arrived at 9:30, we had tea and chatted then I made some eggs with goat cheese and a mango smoothie. I was going to leave for the rehab class at 11:30, glanced at my watch at one point and was shocked that it was 1:00! Our breakfast lasted until Michael arrived home. She left around 4:30. What a breakfast! I don't think there was a pause in the conversation.

Sometimes I get so caught up in my routine that I need an extended visit with a dear friend to remind me that I am bless to have so many wonderful people in my life.

Tuesday, July 27, 2010

Parenting Stories

During a recent dinner with our friends Lori and David, Lori commented that I was the only person she has ever met who had great parents. Others sometimes had one good one and one bad one. Most just don't get along with their parents. Ever. It was rare to have a matched set of greatness.

I didn’t know that our house was different from any other. I thought everyone played cards, and joked, and laughed, and cooked, and teased, and played music and sang. I thought everyone looked forward to being home.

It wasn’t until I was well into my 20’s before I realized what a wonderful childhood I had and having my parents was a gift.

Stories of my perfect childhood often brought with it some jokes. At the school, the assistant principal – who had a horrible relationship with her dad – once started a meeting with a statement about how all of our childhoods were horrible. I raised my hand. Not mine, I said. She paused then said, “Dorothy, you’re not in Kansas anymore.” Everyone laughed.

When I was working before William was born, I would get a phone call from dad to join him in the city for lunch or meet him at their house to go to a Giant’s game together after work. This was not unusual. He did this often.

I think he learned this from his mom. She made each of the five children feel like they were the most special person in the world and her most very favorite. She also taught him several things of two I can only remember at this moment: Soap is cheap so use it. Walk like you’re going someplace.

She would ask dad how he was doing in school then suggested they sneak away to see a movie. I know, bad but they really bonded over the naughtiness. When he told her a bold or slightly blue joke, she would laugh and love every moment but said, “Dick, that’s awful. Just awful.” He loved that. He loved to make her laugh.

I know he and mom did special things with all three of us. I know they were there to help Lee during her divorce and rescued Chip from starvation as a college student. Those are the big things but I know there were lots of important little thoughtful things to let them know how special they were, too.

I was always grateful that my mom never competed with us like so many of the moms I saw at school. She was always beautifully dress, very trim and pretty. She also had an air of intelligence about her but with a “don’t mess with me” vibe just below the surface. Her strength showed.

A progress report came in the mail. I was flunking chemistry as a sophomore in high school. It was the first and last class I have ever flunked in my life. Instead of screaming at me, something she would never do, she phoned the teacher. When I got home, she calmly told me that she and the teacher had made a deal. She had to promise that I would never take a chemistry class again and he would give me a D-. Passing. Deal! I just didn’t understand chemistry. Still don’t.

She also never quite understood upper division math and told my sister to just get a passing grade. Fortunately, Chip and I got the math gene so we were okay. The bottom line is that she understood. We were not expected to be perfect. We were expected to try our hardest.

Dad taught me how to throw a hard ball. As a teenager, he would call up to my room to grab the gloves and a ball; we would stand in the street and throw a few balls together. As I would be warming up on the first few, they would not be my best efforts, he would shout, “Quit throwing like a girl!”

I would shout back, “But I am a girl!”

He would pause then reply with a smile, “That’s no excuse.”

So Lori, these are some stories about my parents. They were the best.

Monday, July 26, 2010

Welcome to the World of Lung Disease

The wife of our friend who has lupus and young children just had a lung biopsy. One lung seems to be diseased though the other is fine.

During the procedure, she coded, spent 24 hours on a ventilator and three days in ICU. Not a fun time. She phoned to let me know that it has not been confirmed that she has an ILD. They can’t put a name to what is causing her one lung to fail. The biopsy was sent to my hospital for help with the diagnosis.

After hearing about a connection between connective tissue diseases and ILDs at the last ILD meeting, I thought there might be a connection with her lung issues and her lupus. The problem is, it is only in one lung and if it were connected to the lupus, it would be in both lungs.

So she waits. Doctors don’t want to treat it until they have a proper diagnosis.

She is in bed over 23 hours a day. She only gets up to take her cocktail of pain medications. Each day, she is losing muscle mass and it is growing harder to even walk to the bathroom. She is extremely out of breath. Her husband says that she is only coherent a short period of time during the day. The rest of the time she is in a drug blur.

Her body is breaking down. It is so depleted due to the long-term lupus and gastro problems that I hope she is strong enough to survive a lung disease on top of it all. There is talk of removing the one diseased lung. I am not sure she would survive the surgery. Such a young woman with so much to live for. So very sad.

Sunday, July 25, 2010

Final Note

One final comment I wanted to make about Marty and Bill came from my dad. They used to so trash talk him, mocked him and tried to tear him down by telling him that he was nothing. Worthless. Garbage.

They were rich. They knew all the right people. They made a gazillion more money than my dad could ever comprehend.

When Dad heard about the death of Bill in Mexico he looked skyward and said, “Who’s still left standing now? All your money couldn’t save you.”

Saturday, July 24, 2010


That is what I said when I landed hard on the ground after tripping on something on a sidewalk. Nuts, was what I was really thinking. That’s going to hurt!

On Thursday, I had spent a lovely morning on a breakfast date with Michael. We went to a small mostly organic restaurant in a pretty area. He ordered for me. I especially loved the fruit cup which had mango, white peaches, raspberries, black grapes, and other unusual fruits beautifully cut and presented.

I dropped him off at a friend’s shop then headed to a bookstore. There, I got a text from Natalie that she, Winnie and baby Ollie were going to be at the mall. Could I join them? After a sprint through the bookstore, I met them in the shoe department of Nordstrom’s where Winnie picked out a new pair of pink shoes that light up when she walks. Magic. I found a few cute things for Ollie. He is such a sweet baby.

I sat with them while they ate lunch then headed to rehab. That is when it happened. As I left Nordstrom’s, my shoe caught an edge just outside its doors. BOOM. I went down hard. My left knee hurt, it was bleeding. I put a hole in my good slacks! That was the worst!

The pain was more immediate in my right wrist, shoulder and ankle.

I picked myself up and drove to the rehab class where the nurses lovingly surrounded me. Iced and patched up, I was thrown out. No rehab for me!

Today, I am still a bit stiff in my back, foot and hip. The bruising is going to be spectacular!


Friday, July 23, 2010

Having Everything - Part 2

With Marty away in the fancy convalescent home, a woman who lived two houses away had lost her husband and she offered emotional support to Marty’s husband, Bill. Well, it was a bit more than emotional support. She was very well placed at the very top of the social heap, something that Marty could never achieve as one must be born there.

Finally, Marty developed pneumonia and died. The funeral was highly attended by the social set who had so dismissed her in the end and the local, city and state politicians.

After Marty died, Bill and the widow married. He sold the business, sold the house, sold his other properties and they bought a house together in Florida. She also had many homes including one in Mexico. He had never been to Cancun so they went for a visit. On a sightseeing plane with a total of 13 people on board, it ran out of fuel. As it began to fall, a tree broke through the fuselage then the plane crashed.

Only two people were killed. Guess which two. We all agreed that the revengeful hand of Marty from her grave somehow contributed to their deaths.

When the Mexican government discovered how wealthy these two people were, they held their bodies for ransom.

Within months of each other, both Marty and Bill were dead.

During our trips to Chicago, we visited the beautiful mausoleum, which houses my grandparents, Marty, Bill and Bill’s parents. I find it ironic that Marty and Bill are forever next to each other. She won in the end. The mausoleum also has room reserved for dad’s younger twin sisters. They, dear reader, are a whole other story.

My only cousins. What happened to them?

Patty and Linda hate each other. There is no contact between them.

Patty made a few very bad investments in Florida real estate and lost millions of generational money. All gone. With the money gone, so was the husband. Recently, Linda took Patty to court to remove her children from her care. She lost the case though she continues to fund all of their educations and will always been in their lives.

Towards the end of dad’s brother Bill’s life, he told his wife to not trust either of them. He had left his remaining sister a lot of money to insure she was taken care of until she died and had appointed Linda as her conservator. Towards the very end of his life, he suddenly appointed a third party to approve all of her expenses. Smart man.

After brother Bill’s death, Linda phoned his wife Alma and demanded that the condo he had bought for his twin sisters be sold and given to Patty or Patty’s children. Alma replied that the condo would only be sold after the final twin dies and the funds would be returned to the estate.

I like Alma a lot!

Our entire lives, we were always made to feel that we were second to Patty and Linda. They were the favorites of my aunts and uncles. We really did not exist. When visiting the twin aunts in Palm Beach in 2004, their condo was filled with photos of Patty and Linda and none of us. We were inconsequential yet in the end, all three of us are independent and happy. We even like each other!

These are all the things my cousins never experienced but they had everything. Or did they really?

Thursday, July 22, 2010

Having Everything - Part 1

Life lessons. That seems to be a bit of a running theme throughout my blogs. Today’s blog is really a life lesson: Having everything may not make you happy.

Marty made everyone’s life around her miserable. Their two daughters were given everything. As her children grew, they refused to shop anymore as they had gone shopping everyday of their youth. So, Marty bought all of their clothes for them. They refused to wear any of the coveted jewelry she had inherited or bought with them in mind. As adults, they had to phone her every night before they went to bed. Control.

The oldest, Patty, was in love with a man who did not meet the standards set forth by her mother. They couldn’t marry.

The younger one, Linda, is living an alternative lifestyle. She is currently on the Board of a major eastern university, owns a tremendous amount of real estate and is an attorney who represents abused children. She always donates all of her fees to abused children organizations.

She hated her mother. They fought constantly.

Patty was a very sweet, tiny soft girl who always seemed to be on the brink of breaking. She did marry her boyfriend who was quite a bit older than she. He had the required social background but, alas, no money. No problem. Patty had lots of money from her grandparents so they married and had six children – five boys and one girl – and he never worked again. She married him shortly after her mother’s death. It was documented in a national society magazine.

Marty was found in one of the bedrooms of their home after having a stroke. She was immediately flown to the famous Mayo Clinic. She recovered enough to return home to many hours of rehab in the newly installed pool. Well, she didn’t recover fully. What was taken away from her was the ability to communicate. She could neither talk nor write. Her society friends made fun of her. She became a pariah.

Was this loss of the ability to communicate a chance to learn a life lesson? If so, she failed.

Less than a year after her first stroke, Marty was on a plane to Florida when she suffered another one. Back at Mayo, they performed a brain biopsy. She actually had a disease, which was later labeled Mad Cow Disease. Could she have eaten contaminated meat during one of their many world travels?

This second stroke left her in a full catatonic state: mouth agape as if screaming and wild eyed. She was placed in a very exclusive nursing facility where she had her hair done several times a week by a private stylist. Her nails were also attended to. She was given the best of care for a small fortune.

There she sat for five years.

Tomorrow: Part 2

Wednesday, July 21, 2010


Martha. Marty. Aunt Marty. She was my dad’s oldest sister. First born of five children. She loved that status and was very unhappy when dad was born next– a boy! – which she felt undermined her first-born birthright. She tried to kill him. Several times. Really. He had the scars.

She hated her father. She was one strong woman and all of her life she really tried to control the lives of every person around her. The control was done in a very negative, nasty, bullyish, hurtful and blunt manner. She could destroy you. Really.

It was not until after her death that some of the family realized that she probably had some kind of mental illness. As a child, I never liked her and was a bit afraid of her. Always trust a child’s instincts. She, on the other hand, felt that I was the only one who had “potential.” Oh my.

Lee and I were often invited to spend weekends in their big mansion with their maid and their new Cadillac convertibles to go endless shopping. It never felt right or comfortable and we were so happy to return to our very little house and our happy parents. Chip was never invited on these weekends. He was a boy. Marty had difficulties having children then finally had two daughters. She was angry that my dad had a son – the only male in the entire line – and she couldn’t have one. She couldn’t buy one. It was out of her control.

Mom never wanted to be with her. I think she was very jealous of my mom for her background and education and made her life really miserable. She would put her down and belittle her in front of people every chance she could. Mom always returned from a visit with a massive headache.

What hid Marty’s illness is that she was very beautiful, knew whom to befriend, learned and became well known in Chicago society. Her plan of working for an airline because only wealthy people flew in those days, paid off. She met Bill. He was a second generation to a rubber company fortune. Serious money. His mother took Marty under her wing, taught her about the social graces and all about society. Marty found her niche.

Marty and Bill were members of the Chicago Yacht Club and he raced with the America’s Cup. They ran with the high society. They threw parties three times a week in their huge home on the right road in the right town where they sent their two daughters to the right school. They later were sent away to the right eastern high schools to get into the right colleges. You get the picture.

I do remember her Christmas Eve parties, which always had the rich and famous in attendance. The father of television news and the man for whom the ballpark was named were two of many famous people who attended those parties.

My parents escaped her clutches when they moved across the country. She lost her self-perceived control over them. She berated them for leaving “the family.” Marty always felt that the family you were born into was to come before your own family that you have made. My dad never bought into that.

I think what bothers me the most about Marty is that just before dad died, he looked up into the corner of the hospital room and said, “Oh God, its Martha!” His voice was filled of dread.

How she died, how her husband died and what has happened to the daughters who inherited great wealth from their grandparents as well as their parents is a cautionary tale. It is coming up next.

Tuesday, July 20, 2010

Lee, Parents and Grandfather

My sister Lee had a different relationship with our parents than I did. I think it may be because we used to drop in when my parents lived close by and also had them stay at our house so often after they retired. We grew to know them as people and not just as parents. It also gave us the opportunity to talk with them about their lives and their insights, which became more defined as they aged.

My dad had a difficult father. His family was full of very strong women and the women had great disdain for their father. But, there must have been some feelings for his father as every afternoon his mom would take a bath and changed her clothes to greet him in the evening. Along with all the browbeating and the economic depression of the day, dad's three sisters constantly belittled him. They finally broke him.

His father began to drink and gamble and really not work. Money was scarce. It became difficult to find the money to feed five children. Throughout his life, my dad also saw his father as a weak, sad, and absent person. It wasn’t until a few years before my dad’s death that he really began to understand his father. He changed because of the circumstances and the constant degrading by the family. Dad looked forward to seeing his father again to tell him that he understood. Dad got it.

In a recent conversation with Lee, she repeated the story of the drunk, useless grandfather. I corrected her. This is only one example of conversations with her that she really didn’t have the full facts. This past weekend, we talked a lot and had great conversations about long dead relatives. She remembers some things so much better and I do since she was older. We were able to fill in some blanks.

As for my grandfather, he died alone on a freeway, miles from anywhere. They think he was trying to get our house and may have suffered a stroke, became confused, stopped the car and started walking. A car hit and killed him.

I remember him. I remember the smell of him yet I was still very young - just 3-years old - when he died. I always trust children’s instincts and I remember nothing about him except a soft gentle soul who had a lovely smile and kind eyes. He always took the time to talk to me. I felt truly loved by him.

Monday, July 19, 2010

Betty and Chip

These are the best of times. Yesterday, I looked around the table during dinner and gave thanks for each person there: Mom, Lee and her husband Jeff, Chip and wife Betty, Shelley and, of course Michael. The only one missing was William. He was working in LA this weekend.

Betty and Chip rarely come to California and we were thrilled to have them to ourselves for an entire day. Everyone begged us to spend the night so I ordered a large top loading liquid oxygen tank delivered for my night usage. But, they forgot the hoses so we had to rig something together.

Michael, mom and I met at Lee and Jeff's house at noon on Saturday. They live in a very old town near Sacramento with the first opera house in the state! Beautiful Victorian homes stretch on for dozens of blocks, one more beautiful than the next. There is a sweet little Main Street where they buy everything from the local merchants. Roofers to vacuum repairs. Lunch was in a very authentic Taqueria, where the food was so fresh and delicious.

We hung around their house in the afternoon; Michael and Jeff hung out in their pool in the 100+ heat then we all went out for dinner. Eating out two meals! A real treat for us!

Dinner was in a former hardware store so the walls were very old brick. The old wooden racks for nuts and bolts still lined the entrance. Lovely dinner. Great food and conversation.

They live near the Delta and the breeze kicked up in the evening. The temperature dropped so with the help of the fan, we slept really well.

My mom looked better since she is no longer in constant pain but she is now so tiny. I swear she has lost a few more inches and weight. She was 5’5” and I’ll bet she is around 4”9” and well under 100 pounds. Shrinking away. Scary.

Betty and Chip arrived Sunday morning. It was even HOTTER! Over 100 degrees! After a simple but great lunch, we all jumped into their pool. Betty and I jumped in again just before dinner.

Dinner was a simple BBQ with light salads and the birthday cake I made for Shelley. She just turned 32-years old! Singing the traditional song in a family of musicians is always a treat.

I was able to spend quite a bit of time talking alone with Betty, some time with Chip and lovely time alone with Shelley. She and I did vow to meet for an afternoon in the city in August. Just the two of us!

Our time together was short but the conversations never stopped. At dinner, there were three loud, laughing conversations happening at the same time. As they all prepared for bed, we headed home to our little house on the coast and appreciated the drop of temperature the closer we got back to our life.

Saturday, July 17, 2010

Brain Power

I worry a lot about not using my brain. I tend to be so forgetful that I have learned to write everything down. I can’t even remember four items to buy at the grocery store. I wander through the aisles trying to remember, which finally happens the moment I arrive home.

Through POGO, I play a lot of card and word games online. I love them. I also feel playing the piano and with the orchestra stimulate the old brain. Or I hope so, anyway.

Every September, the kids from the local grade school sell magazines as a school fundraiser. We usually buy several from each of the neighborhood kids and end up with a dozen magazines arriving in the mail for the next year.

Last year, I needed to choose just one more from the last child and searched the list of magazines. Then I saw it.

Scientific American.

Science. I don’t have the science gene. Maybe I should order this and educate myself a bit. Use my brain! Done! It arrived. I briefly read the smaller articles then worked into the longer ones. It became clear that I didn’t understand anything I had just read.

I announced to Michael that my goal was to be able to read and understand one article before the end of the subscription.

The end is near and I have learned a lot. Yes, I finally understand some of the articles. No, I don’t understand most of the articles. My brain hurts.

I think I need to renew the subscription.

Friday, July 16, 2010

Shelley's Birthday

I have one niece. Only one. Shelley is a beautiful, smart woman who has made her way well into this world. She is living near her parents with her boyfriend. She is the real writer of the family.

Today is her birthday.

I will never forget the day she was born. We got the call that Lee was in labor but there was no hurry to get to the hospital. We all were worried about her giving birth as she really did not tolerate pain well and labor is, well, labor.

We sang at the evening Mass as usual then headed down to await her arrival. The waiting room was full. This was in the days when no one was allowed in the birthing room except for short periods of time. Our mom was pacing. She was in agony. She so wished that she could relieve some of the pain for Lee.

The funny part is that Lee totally surprised us all. She had a completely natural childbirth! Lee! It was just a preamble to our later discovery that she is one strong person.

When Shelley was born, she was placed in front of the window for all of us to see her. We all felt that it was quite the opposite as she clearly was checking each one of us out, almost like a checklist: Grandparents – check. Uncles – check. Aunt – check. She was very clear eyed. Very present.

She was also the most beautiful child every born. A true Gerber baby.

Moments afterwards, we got to see Lee. She was sitting up in bed feeling great. She looked fantastic. As Shelly’s father’s brother’s girlfriend – gotta read that again! - went in for a quick visit with us, Michael noticed that she began to sway. He ran around Lee’s bed quickly enough to catch her before her head hit the floor as she fainted. Later, she said she had huge bruises on her arms where he had grabbed her.

We lived so far apart and we all had busy lives yet I wish I could have been more present in Shelley’s life. One of my few regrets.

Happy Birthday, Shelley. xoxo

Thursday, July 15, 2010


I have thought a lot about dying. I worry about my husband and son afterward. I don’t fear my actual death. Weird.

My dad had a horrible death. To recap: He died after a month in ICU following elective same day surgery. We had to remove life support.

I don’t think you can describe grief until you have lived it. It is physically painful. My body hurt. My mind never settled. The first year was horrible. Dad died ten days before his birthday. That along with Thanksgiving and Christmas that followed shortly afterwards is just a blur in my mind. The first anything for the next year was a constant reminder that life would never be the same. I was numb.

Michael was not handling the grief well. I really couldn’t begin the process because I was so worried about him. After a concert at the school one night, I came home to find him sobbing on the floor. It was his turning point. It is how he was able to grieve.

My mom found solace with a woman friend she barely knew who had lost her husband a year earlier. This woman led her though the process. They are still best friends today and I was able to thank her at my mom’s 80th birthday party two years ago. She helped my mom began her next stage of life. Mom created a new life. She still dreams about my dad every night. Sometimes they sit and talk about how things are going with everyone. Sometimes, he is just there. She feels she is still married to him though he is not physically present.

After the funeral, I never missed a day of work at the school. As I drove through the gates every morning, I told myself that they are paying me for my brain. I owed them to do a good job. As I drove out the gate every night, I would sob all the way home. Weekends were horrible. I hated vacations, holidays and summer vacation, as there was no work to keep me occupied.

Our decision to remove the live support haunted me. Driving to work one morning, I prayed that he would give me some sign that we had done the right thing. Something. Anything. There is an area near the watershed where my brother used to roam that my dad loved. On the way to work, I crossed a dam over this area and its body of water. As I looked at the water, there was a magnificent rainbow overhead. He loved rainbows.

Out loud, I said, “Okay. I got it. I miss you so much. Mom really misses you.”

About a year later, a mom of one of the high level piano kids came into my office to talk about a music department fundraising concert. She was a respected psychologist so after our business was concluded, she asked about my dad. She asked how I was doing.

I looked at her and said, “Sometime I wish we had had a horrible relationship because his death wouldn’t be so painful.”

She said something that I really took to heart: “I have people who come to see me who are paralyzed in their life. They can’t function. As we work together, I discover that it is usually due to a relationship with one of their parent’s, which can never be resolved. The parent is dead. You need to be grateful everyday for the rest of your life that you had such a magnificent, healthy, loving, adult relationship with your dad. It was his greatest gift to you. Feel the pain. Feel the loss and I promise you that you will come out on the other end of the grief with a deeper love for him and mentally healthy.”

Slowly, I remember physically putting one foot in front of the other to function: Work, grocery shopping, paying bills, life. After awhile I would sometimes forget to have to keep moving. Finally, I was able to function in the world but it took a whole lot longer to settle his death in my body.

I always remember to talk about him with my mom. Everyone but us seems to be uncomfortable talking about him so she and I do so often. This past Father’s Day, I told her that Michael and I had shared many memories about dad.

The school mom was right. It did take a long time but I did finally come out of the deep grief so much wiser. I am a person living well with a bad diagnosis due to the many lessons I learned going through the death and grieving process for my dad. Even in death, he still taught me lessons.

Wednesday, July 14, 2010

The Press

Our friend Barbara lives on a cul-de-sac with a family whose son was killed in Afghanistan. It was all over the news. She said he was a great kid, they are a great family and it is a great tragedy. She noticed something was going on because of the military car parked in front of their house. And then the press arrived. Lots of press. The press kind of ambushed people in their driveways as they arrived home. Did they need to be there? Really? She refused to make a statement, as she wanted to protect the family’s privacy. She also mentioned that the biggest pain for the family was dealing with the military. The family arrived in Germany to escort his body home and were met with endless red tape. Just what a grieving family needs.

Our investment broker and friend was also a pilot. Years ago, he agreed to act as co-pilot to a young girl who wanted to break the cross-country flying record for a child of her age. I think she was 11 years old. Things went very badly the third day out. They crashed. He, the young girl and her father were all killed. It made the national news.

We went to our friend’s funeral. We had to hike in as the TV trucks surrounded the church for blocks and the press was actually in the church filming the ceremony. It felt very intrusive. It felt very wrong. If you tried to get through the throng of cameramen and reporters, there was a shove back. They were almost militant in their desire to “get the story” at any cost. They also got many facts of the story wrong.

That experience changed my view of the press forever. I had always thought of them as the bearers of truth and light and goodness. Woodward and Bernstein. Instead, I found that they are bullies. I hope to never be the focus of their lenses. I now question every story as I realize that it is always told through a personal lens.

The days of an independent press are gone. Base journalism and gotta journalism are here. Screaming each other down on TV is here. Black or white. Right or wrong. Left or right. There is no middle ground. There is no civil discourse. There is no depth to any story. Each side is called Nazis if they don’t agree with the other’s opinion.

I have given up newspapers. I read the news from the Internet. I watch a variety of news channels, as I believe that all project their own personal viewpoint to any issue. To get close to the truth, one must watch, listen and read all sides. The truth lies somewhere in the middle. I worry that people who only watch or read or listen to one side of the argument never fully understand the issue.

There is a current ad running on TV featuring some local news anchors. One comments that they are not just there to read the news but they are advocates. Advocates? Who hired you to be an advocate? We just want the news, not your personal spin.

Back to Barbara. The memorial service for her neighbor’s son was last week. She said it was very touching but just sad. She was also able to speak with his mother a few days later. I can’t imagine losing a child. My dad’s death sent me into deep grief. I don’t know if I could ever come out the other side of grief after the death of my child.

I hope his mom has the inner strength to allow the process of grieving to happen. Her life will never be the same but while adjusting to that fact, it will once again be clear that the goodness of his life will reveal itself with great memories. The pain will soften. It won’t come easily or quickly. The family has a long road ahead of them. God speed.

Tuesday, July 13, 2010


Boy, it hit me like a ton of bricks. On Wednesday, I was reading my morning blogs, had a gluten free waffle with a tablespoon of peanut butter for breakfast and it quickly went down hill from there. I was suddenly nauseated. As you may remember, dear reader, I cannot vomit and have pills to control nausea. I quickly took the pill. It didn’t work well and the reason became clear as I noticed that it was past its expiration date.

I couldn’t look at food on TV, in a magazine or even think about it. I was green.

One of the drugs I take is a chemotherapy drug, which I have taken for almost three years. The effects are as wild as the disease. Thrush! Shingles! Sometimes I loose handsful of hair and other times, I have no effects from the drug at all. Sometimes I get nauseated. Could I be feeling ill because of that drug?

Kathy from the rehab class and I had a lunch planned so I had to cancel. We chatted on the phone for over an hour while I was poised delicately on the couch trying not to moan. We have so much in common that I am sure it will be a great friendship.

I woke up Thursday feeling better. I had some toast for breakfast and looked forward to soup for lunch. Simple foods. Little food. I tried going to rehab but they threw me out. I didn’t look good. I didn’t feel good.

Later Thursday, I realized that I actually had a UTI because of a low fever and chills. I also had the urgent need to void without much results. Classic symptoms. I have only had two of them and apparently they are very common in post-menopausal women. The first one landed me in the emergency room as it visited my kidneys.

Friday found me in the office of my local doctor who ordered some drugs so I hope to be on the mend soon. Since yesterday, most of the symptoms have lessened but I am still so tired of not feeling well. Maybe this has been brewing for a while and is one of the reasons I have not recovered from all the activities in May.

Let’s hope so.

PS Mark, who was mentioned in yesterday’s blog, got a call from the doctors yesterday. After reviewing all the tests about the tenderness in his pelvis from the accident, they discovered he has cancer. The accident may end up being a huge gift in disguise.

Monday, July 12, 2010

Erie Canal

Road trips. Here is one final musical tale about the 2002 trip along the Great Lakes. When we were driving from Rochester to southern Vermont, we crossed over the Erie Canal many times. At least a dozen times. Every time, I would burst out singing the old song:

I've got an old mule and her name is Sal,

Fifteen years on the Erie Canal.

She's a good old worker and a good old pal,

Fifteen years on the Erie Canal.

We've hauled some barges in our day filled with lumber, coal and hay

And ev'ry inch of the way I know From Albany to Buffalo.

Low Bridge, ev'rybody down, Low Bridge, we're getting into town!

You can always tell your neighbor, You can always tell your pal,

If you've ever navigated On the Erie Canal.

Poor Michael. By the time we crossed it for the tenth time, he was even singing along. He had heard it before and burst out laughing when I began singing it the first time. “How do you remember this stuff?”

Years ago, my dad’s older sister Marty gave us the Golden Book of Records with a small record player. Lee and I learned every song on all 12 albums including the most boring ones. We loved the orchestra album but our most favorite one was the Folk Music album. Casey Jones, John Henry, Darling’ Clementine, Red River Valley, and so many more were featured. I drew on a lot of that music when I taught Folk music to the kids at the school.

And in the middle of upstate New York, it was useful! And entertaining!