A Letter to Julia

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Chapter 4

Lupus Takes Over Our Family

Thursday, March 12, 2009: The sun is shining today after one last wintery blast from the Arctic.This is very unusual early March weather for Western Washington, but it is forecast to warm up by the weekend.Normally, such a bright day would cheer me up, but there is too much to worry about.Mary is still depressed and it is all I can do to be around her since she looks so sad.The flower shop is just hanging on by a thread.If Mary was her old self, the Mary that started and ran her own business, I feel we would be doing better.As it is, Mary gets her work done, but has no will to work to bring more flower business into the shop.

We sent out the questionnaire that the lawyers for Boehringer Ingelheim sent us on Sunday.We are desperately hoping for financial help from them, but have not yetreceived a reply.

I’m sure that we are not much different from other families that have a child diagnosed with a serious chronic illness. The plan is to try to not let the illness take over the family, but to live as normal a life as possible.We were a very active family and loved camping and hiking, and the Pacific Northwest with its mild climate was perfect for outdoor activities.We wanted to keep to this life as much as possible.

When Mary was diagnosed with Lupus there had been medical advances that helped with the management.However, the public perception had not caught up with the medical advances.If people of our parent’s generation new anything about Lupus it was never good.For them it was an early death sentence after years of suffering.

When our first daughter Amy was born, my mother naturally took over the responsibility of caring for her when my parents babysat.In my parent’s generation it was the mother that stayed at home and raised the children.When Mary came along my mother was older and it was harder to babysit a toddler and a baby at the same time.My father gladly stepped in and became Mary’s special pal.I struggled with telling my father about Mary’s Lupus diagnosis since he was so close to her.I didn’t want to give Mary’s illness a name since I was afraid that my father would misunderstand her chances for a normal life, and only focus on his outdated ideas about Lupus.Helen argued for telling my father the truth and trying to explain that Lupus was now better managed then when he was growing up. I took Helen’s advice and my father seemed to take it in stride.

Helen and I frequently worried about telling our parents things that might be hard for them to shoulder.It, most of the time, turned out that they were able to withstand hardship and sorrow better than we could.Helen’s mom, with her weak heart, was a special worry.When Helen’s sister-in-law Vickie was killed in the accident we were afraid that the news would kill her.We need not have worried about her.Her faith and stead-fastness during that ordeal helped all of us get through it.Perhaps it was going through the depression and World War II that toughened our parents up.Whatever it was we were glad for it.

We were told that too much direct sunlight could and would trigger a Lupus reaction.This was a problem as the Pipe Lake property was only fifteen minutes away from our new log home in Hobart.Mary tried to cover up as much as possible when at the lake, but what teenager wants to sit in the shade while everyone else is swimming and playing in the water.Consequently in summer Mary was in the sun too much.The odd thing was that I didn’t really think it really made any difference to how she felt, which was chronically tired and often nauseas.At the time I didn’t put too much importance on her lack of sun sensitivity.Only in the future, after Mary was married, had her daughter and was ambushed by Mirapex did that fact become important to me.Quinine had been used to treat the symptoms of Lupus.Now synthetic quinine was available called Plaqenil.Mary was taking that along with painkillers to help with her stiff and painful joints.Often in the mornings when she first got out of bed, Mary would walk stiff legged until she could limber up.We joked about how she would make a perfect Christmas tin soldier; after all, it was either laugh or cry.

I had good access to the early NET at the University of Washington where I worked as a scientist.I spent my spare moments scouring web pages looking for any information I could find on Lupus.Lupus is another of those mysterious autoimmune diseases where the body “attacks” its own tissue.Mary had the chronic fatigue and painful joints of a Lupus sufferer but not any apparent internal organ damage.I was encouraged to learn that if the internal organs were not involved at the onset of Lupus then there was a chance that the internal organs would never be affected.I hoped that this would be true for Mary.Otherwise, there was a dearth of good news to be found on the Net.Now everyone uses the term “online” but then the “Net” was new and now readily available to everyone.

We tried to carry on with our lives as best we could and not focus on Mary’s illness.We did have to make concessions for her.All of our beds were hand-me-downs.Helen and I were sleeping on two twin beds tied together with rope. Our springs and mattresses were the ones we slept on in high school.I remember that they were so saggy from use that I put pieces of plywood in between the mattresses and springs to firm them up.Our kid’s beds were no better.Once Mary became too achy to manage her old bed we went out and bought her an expensive spring and mattress set brought home strapped to the roof of our faithful Checker.This did help her sleep better at night.

I had a scientific conference in Vancouver British Columbia in August of 1987; the year Mary was diagnosed with Lupus.We thought it would be fun to travel around the Canadian Rockies after the conference with the kids.Our normal mode of traveling was sans motels.Helen’s brother Richard and his wife June gave us a generous gift certificate to Frederick and Nelson’s in downtown Seattle for a wedding present.Any Seattleites reading this will remember Frederick’s as the flagship department store in downtown Seattle.We never shopped there as it was above our budget.Richard and June expected us to buy some nice furniture or other household item, but we discovered Frederick’s actually sold camping equipment.We purchased a three burner Coleman stove, a family sized tent and an ice chest.I am proud to admit that the Coleman stove is still in great working condition in 2012 as well as the tent.This was one of the best investments in fun that we ever made.

We left Hobart on August 17 in the Checker with every nook and cranny packed with food, camping equipment, and clothes.The Checker had an enormous amount of legroom in front of the back set.I carefully laid a layer of suitcases, then the tent poles on top of the suitcases then the tent on top of that.This brought the floor level up to the back seat.The finishing touch was to open up the sleeping bags and lay them across everything making a bed out of the back of the car.This is the way the backseat kids rode on our trip.They all had to still wear seatbelts of course.I received a per diem stipend to pay for my meals and lodging while at the conference.By not staying at the nicer hotel near to the conference, but staying at a cheaper one further away and cooking our own food in a small microwave our whole family could stay in a motel instead of camping.Once we left Vancouver and the per diem it was camping only.

We camped the first night at North Thompson River Provincial Park.Mary was doing OK riding in the car, but she was pretty achy.The next day we drove to Jasper Alberta where we planned to also camp for the night.By this time Mary was feeling pretty sick from traveling as well as very achy in her joints.We didn’t have the heart to make her sleep in a tent and have to use an unheated outhouse, so we rented a small cabin in a place called the Pine Bungalow’s.Most people wouldn’t find the cabin much of an improvement over a tent, but it seemed like heaven to us to have Mary in a real bed.Despite the fact that we were in a cabin, however, Mary was so miserable that night that we came very close to driving her to a hospital.It was a scary night for all of us.We eventually made our way to Edmonton rotating camping with cabins when Mary was too sick.

In spite of being sick off ands on Mary was a good sport and we all had a great time together on the trip. Our family loved to hike and this trip afforded us with plenty of opportunities for doing it.We still hiked, but we adjusted our hikes so that Mary could still participate.This meant shorter ones with plenty of rest stops. Such was our life with Lupus being the seventh passenger in the Checker.

Mary was testing the limits of sun exposure the first summer she was diagnosed with Lupus, and seeming to get away with it.Helen and I were worried of course, but we were having trouble telling the consequences of being in the sun since Mary felt crummy most of the time anyway.We were warned by her doctor that excess stress or fatigue could possibly trigger a life threatening flare-up.That’s why we scaled back our hiking to paths that I could hike partway with Mary then wait with her while the others hiked on, or paths that were shorter and mostly level.Most hikes she soldiered on, talking, laughing and enjoying nature along with the rest of us.Mary was certainly not a complaining person.

During the whole time that Mary was diagnosed with Lupus one family hike really stands out in my mind.This was a hike to alpine lakes in Mt. Rainier National Park.As always Helen had made lunch for all of us; a special treat of bacon lettuce and tomato sandwiches; most of the time we had cheese and bread on hikes so we were pretty excited about the lunch.The weather was perfect; just cool enough to make hiking easier, but nice enough to sit around the lakes and eat lunch.To our surprise and especially to our young son Adam, the lakes were full of good sized frogs sunning themselves and jumping into the clear water.Adam was fascinated with the frogs and all of us enjoyed watching him play.Helen had brought all the ingredients for the sandwiches packed in separate containers.That way when she assembled them for eating the sandwiches were picture perfect, not a flattened slice of tomato anywhere to be found.

The trail up to the lakes was steeper than I thought it would be.We took it easy climbing, stopping often to rest.We constantly worried about Mary but kept this fromour kids so as not to ruin their fun and to not upset Mary.We really worked at keeping family life as normal as possible.After Adam had his fill of playing among the frogs we packed up and headed back down.Normally Mary set a slow pace for us, but this time miraculously Mary and Adam surged ahead of us and disappeared down the trail.When we arrived at the Checker there were Mary and Adam sitting on the bumper grinning having beaten us down by quite a few minutes.Mary was especially thrilled as she mostly brought up the rear on hikes.We capped off a perfect day by stopping on the way home for dinner, a real sit down dinner not at a fast food drive in which was a staple for us on a limited budget.That evening Helen and I anxiously watched Mary for any signs of a serious flare-up.Thankfully one never came.This incident reminded me of what I read about a boy who had a deficient immune system disorder.He had to be kept indoors away from all germs, but once in the evening after a strong rain had cleared the air he snuck outside and ran barefoot in the in grass.His joy was immense.That type of moment was how I would describe the feelings contained in Mary’s grin as she saw us coming down the path.

Mary started her first year of high school in the Maple Valley. Hobart, where we had our log home, was only five miles from Maple Valley and did not have its own school system.Mary was a well liked and good student.Maybe because of having a chronic illness, or maybe just because of whom she was she befriended everyone, so her friends fell across a wide spectrum of students.Mary caught the school bus at the end of our road which was only a block away.In bad weather, or if Mary was extra tired Helen would drive the faithful Checker down the hill to pick the kids up after school.We were blindsided in December when Mary suddenly announced that she wanted to quit high school in Maple Valley and attend high school instead in West Seattle. West Seattle High School was 30 miles away!Thirty miles one way!

I commuted to my work as a scientist at the University of Washington by driving fifteen mile to Issaquah.There I transferred to a bus to take me north and west to the University District where the University was.Mary had it all figured out.She would ride with me to Issaquah.She would then catch a bus south and west to downtown Seattle.Once at downtown Seattle she could catch another bus to West Seattle.At night she would meet me in Issaquah for the commute home.She would have to leave home at six in the morning and not get back until late at night.Mary would have over three hours of commuting time each day.Taking the bus was not easy even for me.In the winter it meant standing waiting for the bus in mostly cold, windy and damp weather.The busses could be crowded and on rainy days steamy and damp.

We tried to talk Mary out of transferring.Her rheumatologist in Seattle told us he feared that if she tried such a tiring commute it would literally kill her.Needless to say this really scared us.Consequently we located a counselor in the nearby city of Renton who specialized in treating young people.Mary had four appointments with the counselor in December and three in January.We could not understand why she wanted to undergo such a strenuous and long commute and neither could her counselor.Mary was insistent that she would feel better going to West Seattle.

Helen’s mother had graduated from West Seattle High School in 1924, the first of a long line of relatives to do so.Over the years as many as eighty relatives including aunts, uncles, cousins and even Helen and me had graduated from West Seattle High. Mary’s best friend and cousin of the same age, Noelle Knapp, and her brother were going there as well.Perhaps it was these ties to the school that prompted Mary to go there.Or, maybe she just wanted to go somewhere where she didn’t have a memory of always being sick.Or?We didn’t know and Mary wasn’t able to articulate why.As January dragged on the start of the new semester at West Seattle would be starting soon.Neither the counselor nor we were making any headway with her.

We did not know what the right thing to do was.We were afraid that if we gave into Mary the commute would kill her.We were afraid that if we didn’t give in to her it would kill her also. Both her rheumatologist and counselor strongly recommended that she not transfer.Mary was insistent that she should.We were in a quandary.

Her Aunt Muriel Knapp and Cousin Noelle lived in West Seattle.Muriel worked so it would be hard for her rescue Mary if she collapsed at school.Our ace in the hole was Mary’s grandfather, my father.My father was now 81, but still drove out from West Seattle to help my brother and I with weekend projects.He shopped and kept house for himself.Since my mother had died he found a new group of bowling friends in West Seattle.He also visited relatives in town and helped his sister with shopping and other things.He was retired so he could pick Mary up at school if there were any health issues and she could stay with him until we could pick her up. Having my father there tipped the scales in Mary’s favor.With a decision to “let go and let God” we agreed she could try commuting.If it didn’t work out she could always transfer back.I don’t think that today Mary would have had any chance of transferring to a school so far out of her district and also being in a completely different school system.Then it must have not been such a big deal because on February 1, 1988; a day with a low temperature of 21 degrees and a high temperature of only 38 degrees we watched with trepidation as Mary started her commute.

We just finished Mother’s Day 2010 at the flower shop.Mary is gradually improving everyday and we did manage to deliver all the flower orders, but Helen and I had to deliver on Mother’s Day as Mary had trouble getting the flowers done.Previous Mother’s Days were spent doing something fun with our children.Today Helen and I are simply thankful that we survived the terrible Mirapex years with all our children still alive.

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