A Letter to Julia

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Chapter 5

A Good Scare

It’s now the evening of August 4, 2009.I originally mailed information on Mary’s financial and emotional disasters while on Mirapex to Vincent Lodato at Sills Cummins and Gross.Mary is such a trusting person.Even after all the problems she went through with Mirapex she still believes that Boheringer Ingelheim does really care about each and every patient that takes their drugs.Mary is sure they will help her financially after the train wreck Mirapex made in all our lives,

I’m not so sure, but Mary’s hope and faith in people has certainly affected me and given me hope.Everyone we contacted has been very nice on the phone and in emails.They really seem to care about what happened.However, I’m starting to worry since we keep getting moved to different law firms in our dealings with Boheringer Ingelheim.Suppose all this kindness towards us is just a sham to stall for time.We haven’t contacted any lawyers to act in our behalf as Mary is sure Boheringer Ingelheim will do the right thing.

There is a three year statute of limitations in Washington State in which to file a lawsuit in this type of damage. In a simple car wreck the three years starts at the time of the wreck when the physical damage occurred.Medical damage is more complicated since complications from an operation may not be apparent until months later.With damage from drugs the three years starts when the person taking the drugs first realizes that harm has been done.For Mary this was in the fall of 2008.

I would like to share my concerns about the intentions of Boheringer Ingelheim with Mary, but she is in such a fragile mental state that I’m afraid to do it.Mary is just hanging on by a thin thread.She manages to go on with her life, but there is a sadness about her that suffuses everything she does.I suppose just knowing that she missed three years of her daughter’s life would be enough.Adding on the continual burden of bankruptcy, the sorry state of her partially remodeled home and our financial problems is close to pushing her over the edge.I don’t need to add to her misery.

Commuting 60 miles a day in a car and two busses just to attend high school would be unusual for most modern day students.But, commuting 60 miles a day in a car and two busses is unheard of in a student diagnosed with a chronic disease.Just as Lupus now was the seventh passenger on all out family vacations, Lupus was the constant companion on Mary’s commute.

Compounding our worry over the damage the commute was having on Mary’s health was the issue of driving the 45 minutes into Seattle for school functions.One benefit of this, however, was that my father could come with us to events.So we turned what could have been a burden into an opportunity to see family and friends.

My wife Helen has always kept detailed notes on each day’s events on a calendar sold by Seattle Children’s Hospital.The proceeds go to fund worthy programs at the hospital.Helen was started on this right after we were married by both my mother and Mom’s sister Carolyn.Both of them kept similar records on the same calendar and each year Mom bought a calendar for Helen.Now Helen continues the tradition by buying calendars for her daughters.

In the course of writing this book I’ve made extensive use of Helen’s calendars.I’ve scoured them for details of health problems and other disasters during Mary’s high school years, but I couldn’t find any.Helen and I can’t remember any that stand out either.Except for the long and worrisome commute and her chronic tiredness and often nausea Mary’s high school years were pretty normal for a teenage girl.Admittedly, she felt at times like she was caged– a fifteen year old caged in an eighty year old body. Because there were no outward signs of her illness, other than extra rosy cheeks from time to time, it was hard for her friends to understand why she tired so easily or why she couldn’t quite keep up with them.Mary fell for boys just as any teenage girl did.Her first “loves” were infatuations where the boys didn’t know how she felt.In her junior year she met JaJa who became a real boyfriend to her.JaJa’s name had African origins.His father was of African and Native American descent and his mother’s people were Scandinavians. Soon JaJa became a regular fixture around our home on weekends.

Mary kept up an active social life at school.She was in the honor society.Mary even played the maid Edith in the school production of Blithe Spirit by Noel Coward.Mary had to work hard to memorize lines as she was always fighting chronic fatigue, so we were surprised and pleased she choose to participate in the play.My father especially enjoyed going to the performance.

Mary also joined Earth Corps at the high school.Work consisted of volunteer-based and contracted restoration projects on public lands in the Puget Sound and Cascade mountains.I remember driving Mary up to a Douglas fir tree planting project in the Cascade foothills.The day was gray and rainy and Mary was covered in mud when I picked her up, but she was a “covered in mud” thoroughly happy and satisfied teenager.Mary never let Lupus get in the way of what she wanted to do in spite of the fact that the next day probably would be spent in bed recovering.

Mary’s difficulties in memorizing made it hard for her to master a spoken foreign language.Instead she took Latin which is primarily written.Soon Mary was correcting the few Latin phrases I used in my science career. To this day I can tell you how to properly pronounce the famous phrase “veni, vidi, vici” or “I came, I saw, I conquered”.That phrase pretty much sums up the way Mary made it through her high school years.

West Seattle is one of several neighborhoods that make up the city of Seattle.Every summer most neighborhoods hold celebrations that normally involve picking royalty to ride in parades, having street fairs, and classic car shows. West Seattle’s was called Hi-Yu.The name was taken from the Chinook Native American language meaning “abundance”.We were delighted when Mary decided to run for one of the royalty spots.If this were a made up tale Mary would have actually become the queen or a princess.Real life doesn’t always work that way.We did have the fun of watching Mary riding in the Hi-Yu parade.We were a little surprised at how regal she looked in the parade.Our skinny teenager had grown into a beautiful young woman.And so with a grand graduation party at our Hobart log home on Saturday the 9th of June 1990 Mary’s high school days ended and so did the worrisome commute.

When Mary’s older sister Amy went to college at the University of Washington we provided room and board for her at our home in Hobart.She commuted with me to the University of Washington where I worked.This arrangement saved us a lot of money.Even so, we could only afford to give her money for half the tuition and books.The same was true for Mary.She was also expected to pay for half.Mary had gotten several small scholarships when she graduated from high school.She wisely decided to use them at Bellevue Community College where the expenses were much less than at the University.Mary took her first day of classes in September of 1990 majoring in Interior Design.

Bellevue Community College was only ten minutes away from Issaquah where during her high school years Mary had caught the bus to Seattle and I to the University.Now Mary’s commute was easier as we could both catch the same bus from Issaquah which stopped on the way to the University district at the community college.

It was nice for me to have Mary riding the same bus.I could watch her getting off in the morning and get on my bus at night.It was much more stressful when Mary was commuting into Seattle for high school.During the high school evening commute home I arrived in Issaquah ahead of Mary on my bus from the University.A few minutes later Mary would arrive on her bus from downtown Seattle.I was continually apprehensive waiting for her bus to arrive.The evening Seattle bus was always full of passengers.I anxiously watched the stream of people departing hoping to see Mary. I suppose any parent in my position would be a little anxious even if their daughter had normal health.It was much worse with Mary’s chronic illness.

Mary’s early college years were mostly uneventful.She found part time work at a mall in Bellevue, not far from the community college.Mary’s chronic fatigue did not improve as she grew older.We didn’t really expect it to, but we knew of cases where Lupus had gone into remission for other people.We also knew of young people who had died form Lupus.We were happy just to go along as we were.Mary’s often nausea was also still there.I did all the cooking on the weekends.My specialty was pot roast mashed potatoes and gravy.Our kids loved it.What they didn’t know is that it was a most economical way to cook meat.I perfected a method where even the cheapest and toughest cut of meat could be transformed into something tasty and edible if I cooked the hell out of it.Before dinner Mary would often complain of nausea.However, once dinner was on the table she consumed a meal that would choke an ox.I could get a little nauseous watching her eat.I never could figure out how she was able to do it; eat and feel sick at the same time.

Mary and JaJa were still going together and when her classes got out early on a Friday she would hop a bus to downtown Seattle and meet him for a movie or just to bum around Seattle.When we lived in Seattle we spent Sunday’s after church exploring the city.We hit all the free events, museums, art galleries, and waterfront activities.Our kids loved it and it imparted in them a love of Seattle in all its variety.Mary had time after high school let out to hang out with JaJa before she had to take the bus out the Issaquah.They got into the habit of going up to the Broadway District which has long been the center of all things eclectic in Seattle attracting a wide variety of artist, poets, writers, students and all sorts of hanger-on’s.People-watching was fantastic there and the shops were as varied and interesting as the people.Another favorite high school spot for them was the International District.

When I was at West Seattle high school in the 1960’s my best friend Mike was of Japanese descent.Once in a while he would take me down to the Kokusai theatre in the International District to see Japanese samurai and gangster movies and eat real ethnic Japanese food.That was before the name was changed to the International District. Then we referred to it as Chinatown.Mike’s family was sent to camps during World War II and I believe Mike, or at least his older sister was born there.Mike and I never talked about that.I saw him as one of the more popular boys in school and I felt privileged to be his friend.Only later did I become aware of discrimination against the Japanese that lingered after the war.Mary’s like of the International District brought back many nice memories for me.

It didn’t seem unusual to me that on the Friday of October 25, 1991 Mary planned to travel into Seattle to meet JaJa and see the newly released movie Ricochet.JaJa always waited to see that Mary got on the right bus from downtown Seattle to Issaquah so, when I waited at the park and ride in Issaquah that night for Mary to arrive, I wasn’t especially nervous.The bus I thought she would be on pulled up at the stop.I watched the commuters depart, but Mary was not among them.I wasn’t too surprised as busses were not always on time and they were easy to miss.A few minutes later the next bus from downtown Seattle arrived, but no Mary on that bus either.I began to get worried.There were several additional busses from downtown Seattle that came during the computer hour every few minutes. After the evening commuter time the busses only came every hour, then even at longer spacing.I waited with a sinking heart as bus after bus disgorged passengers, but no Mary.My mind turned to dark thoughts of horror, of Mary abducted or worse.Suppose she had a Lupus flare-up and was laying somewhere sick and unattended?Only a parent that had a child go missing could understand what I was going through.

Cell phones were not available in the 1990’s so I had to make do with calling Helen on an outdoor payphone at the park and ride in Issaquah. I didn’t have much change with me to keep feeding the phone and I was afraid to leave the park and ride lot for fear Mary would finally turn up.I called Helen when Mary didn’t arrive during the main commuting time.It was cold and damp but I stuck close to the payphone.At least Helen could call me if she heard anything.I expected Mary to meet me around 5:30 PM, but now it was after 7 PM and no Mary.I have never felt so alone and forlorn in my life as I did that night.I tried to push any awful thoughts away, but couldn’t do it.I had to keep enough money to call Helen if Mary turned up, so all I could do was wait for Helen to call.While I was waiting police cars would occasionally cruise through the empty park and ride.Each time my knees would buckle and my heart would pound.

While I was at the park and ride Helen was trying to reach JaJa by phone.Today that would be easy as most everyone has cell phones.Then it was impossible unless JaJa was at home.Finally Helen did manage to reach JaJa at home.They had gone to the movie as planned but he had a dentist appointment afterwards so he wasn’t able to wait for Mary to get on the bus out to Issaquah.Mary or JaJa didn’t think anything about him not waiting as Mary had uneventfully commuted through four years of high school.Helen called Seattle Metro to see if they could contact the bus drivers leaving Seattle to see if anyone had seen Mary getting on one of the busses.This was a long and drawn out process at that time. Today I suppose it would be faster with better communication available.

Meanwhile I was slowing dying at the park and ride.I wanted to drive into Seattle to look for her just to do something, just to do anything but I knew I needed to stay put.Helen was on the phone with Seattle Metro when the Seattle Police interrupted the call.Mary had been found in Westlake Center in downtown Seattle and was now sitting in the police station in Seattle.Today on the news a favorite ploy of newscasters when interviewing survivors of disasters or other victims is to ask how they were feeling at the time.Most of them can’t give a good answer.I know why.When I heard that Mary was safe I went numb.I had no feelings to describe.I got into my car and drove the fifteen miles into the police station.The trip in to Seattle gave me time to compose myself.I didn’t want to overly excite Mary when I saw her.

I went in the door of the police station and there was Mary sitting on a chair knitting, looking happy and perfectly normal.After verifying that I was indeed her father, Mary and I left for home.Mary remembered going to the movie with JaJa and saying goodbye to him when he left for his dentist appointment.She had time to kill so she sat down on a bench in Westlake Center which was in the center of the downtown shopping district.Mary remembered becoming confused about why she was there, and then not knowing what to do, stayed sitting on the bench.It became dark and as the shoppers and workers left for home the square was taken over by homeless people.Several sat down next to her.They could tell she didn’t look homeless.One offered her a candy bar as she was shivering from the cold.That slight nourishment started to bring her out of her confused state. Rowdy young people were in one corner of the square and policemen had stopped to check them out.The homeless man that had given her the candy bar asked her if she had any reason to be afraid of the police.Mary answered that she didn’t think so and on his urging she walked over.As soon as the police heard her story they took her down to the station where they called Helen.By the time I got there that candy bar had brought her back to normal.

Mary didn’t seem any the worse for her ordeal.We chatted on the way home about the movie.When we got home she told Helen that she was really confused when she was sitting on that bench.She knew her mom would be worried about her and could see a pay phone but couldn’t connect the idea of calling her mom to ease her worry.She was cold and had a coat sitting right next to her on the bench but couldn’t connect the idea of putting it on to get warm.By now, though, everything seemed normal and that’s the way Helen and I kept it.However that incident started a round of doctor visits and more worry of what Lupus might be doing to her.

Today Mary and I were returning from delivering flowers in Auburn.It’s September 2009.On the trip back to Enumclaw where the flower shop is Mary received the call on her cell phone we had been waiting for.It was from yet another new set of lawyers that were representing Boheringer Ingelheim.I could tell how Mary was collapsing in front of me that it wasn’t good news.I pulled over to the side of the road to listen to her side of the conversation.Mary seemed stunned and was in tears. She couldn’t talk.Mary handed me her cell phone.I explained to the caller who I was and that Mary was emotionally fragile and couldn’t continue talking.

The most they could offer in financial aid was only $2000 and probably not even that. Their “experts” had found that Mirapex was not the cause of Mary’s compulsive behavior.Their “experts” had determined this without interviewing her doctors, her family or Mary.In addition the warning she received with her first prescription of Mirapex was adequate to warn her about any such side effects.This was in spite of the fact that compulsive behavior was never mentioned in that warning.I was livid with anger, but knowing that they were probably recording the conversation managed to keep my cool.I don’t really know if they were actually expecting Mary to accept such a paltry amount today and in addition sign a non discloser agreement.Maybe they just wanted to beat her up in anticipation of a future settlement.

Mary had never filed a lawsuit or obtained a lawyer up to today.Mary was unable to talk anymore on the phone. I thanked the lawyer for her call, but made it clear that this was unacceptable to Mary who would not settle today.She told me that she would contact her lead lawyer and get back to us.We never heard from them again.

Today the awful truth hit me.Boheringer Ingelheim all this time was most likely playing us for fools and simply trying to run out the clock.They took advantage of the basic goodness of Mary and her faith in people.They browbeat an emotionally fragile woman into submission during their call today.I don’t know people like them.I can’t understand them.I don’t know how they go about their lives among family and friends unashamed of their actions.They are no different than the snarling lion that snatches the bleating lamb from its mother’s arms and devours it with no pangs of conscience.Now I know what has to be done.We need to find our own snarling beast to fight them.Today we start looking for a lawyer to represent Mary, the meaner the better.

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