Making my bed

I was making my bed yesterday. I don't do it often enough. I used to do it every week. Now I've gotten lazy and do it maybe once a month.

I do try to take a shower before I get in there, so I won't be sleeping with a lot of germs, and they'll only be my internal germs, I guess, since I sleep alone. 

When I had a cat, I wouldn't let him sleep with me. Maybe I avoided toxoplasmosis infection that way. 

More recently I read an article that explained that this disease causes a particular type of brain damage that makes you want more cats, a curious type of symbiosis.

So I was making my bed, and I noticed how easily I pop pillows into pillow cases, and flip covers onto the bed. I've developed all sorts of conditioned reflexes that make this almost effortless, which makes it hard to understand why I do it so seldom.

I'm better than my kids in this respect. The only times their sheets get changed are if I have a house guest when they're away and I put clean sheets on the beds for the guest, or if I really nag a lot.

So, I'm doing this task, and I'm hit with the memory of when I was five and my mom first started teaching me to make a bed.

It was very hard then. I was a lot shorter, so to reach the side near the wall I had to crawl over there on the bed, which them messed up the covers. I hadn't yet developed a strategy for dealing with these issues, but I had listened to my mom read Mrs. Piggle Wiggle. That book had a story about teaching kids to make a bed. In that story, it was emphasized that the bed should have no wrinkles. Probably, my mom told me the same thing.  As a result, the problem of getting rid of wrinkles while crawling about was distressing to me.

Then the thought of the likely recurrence of cancer came to mind, along with the consciousness of the limit on the number of times that I can use this skill that I've acquired over the course of many years, and how all the effort that I've put into learning these little skills may soon just disintegrate.

I find that the prospect of loss of other knowledge, like loss of knowledge of patent law, doesn't disturb me as much as the loss of something so basic as making my bed.  Perhaps, because I was such a small child when I first learned, this simple task seems more fundamental to my character, to me as a person, despite the fact that it is not at all unique or distinctive, seeing as most people in our culture know how to make a bed.

My friend T.J. Mannix posted this link on FB

 https://www.facebook.com/photo.php?v=10204405724884727

Which sort of captures my feelings about my newly made bed and wondering about what will happen to it when I can't make it any more.

Remembering Nora Solmssen

Edits:

The good thing about posting something like this is that it can help you get in touch with lost family members.  Nora's daughter Mimi contacted me and offered some corrections

1) Nora had ovarian rather than breast cancer
2) Nora was tested for BRCA mutations.  The first test was inconclusive and the second test was negative.  This makes me wonder how accurate these tests are.
3) Nora was diagnosed in 2001 and died in 2005.  My father died in 1997, so he couldn't have been the one who told me she had cancer or that she had died.
4) A second cousin on my *mother's* side says that her mother, who would have been my mother's cousin, used to play music with Mimi, and that Mimi was a violinist, not a pianist.  Small world.

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The original post:

Recently, I've been remembering my second cousin, Nora. 

I only met her once or twice when I was a child. Her family lived in New Jersey. We lived in Wisconsin. 

Her father was eight years older than my father, and my father had kids late. He was 41 when I was born. As a result, she was probably twenty years older than I. 

I remember her as very beautiful. She had long, thick, shiny jet-black hair. She was slender and graceful. 

She had an aquiline nose. Some people don't like that type of nose, but I always liked them, because several people in my family had them. 

I dated a guy briefly who had a hooked nose, like Nora, and like my grandfather. Later I saw him and he had had his nose bobbed. I was horrified. I loved that nose. Good thing he dumped me before he bobbed his nose. He was Iranian, but he reminded me of that part of my family that was of Jewish ancestry.  He considered himself Aryan, though. 

Nora was a Solmssen. The Solmssens and the Mendelsohns were the great Jewish banking families of Germany. 

When I was twelve, my father took me to Germany, including to Berlin, where he was born. 

My grandfather was a successful patent attorney before the Holocaust. My dad took me to the building where he was born. His family had lived on the top floor.  They had the whole floor. It was a large building. The whole top floor would have been a huge apartment. They had servants. There were stone sculptures, maybe of lions, on the railing of the balcony along the front of the top floor. Even with the holes in the walls left over from the WWII bombing, which were still visible, it was an impressive place. I think it was on Linden Street.

Yet my father's family were the poor cousins. He also took me to Schwanverde. I hope I have that name right. Schwanverde was the complex where my father visited his Solmssen cousins, when he was a child. The Solmssens had a different name then.  They were called Salomonson.  I hope I have name spelled right also.  

When we went, Schwanverde had been made into a children's camp, but it was still impressive.  It was a huge house, on a lake. Later I was told that it was actually an island. My father told me that every tree had been imported, that they were all exotic. 

My father also told me that Hitler later confiscated that complex and lived there himself during WWII. 

My father's cousin, Kurt, Nora's uncle, later told me he had had to fight with the neighbors to keep it a children's camp. They felt that a children's camp did not belong in their fancy neighborhood. 

Nora's mother, Mimi, was from the Mendelsohn family, which also included the famous composer, Felix Mendelsohn. Mimi was an accomplished pianist herself. I seem to recall that Nora was a musician as well and that she may have sung with Don Ho. 

When I knew them, Nora's parents, Mimi and Max, lived in an elegant mansion, in Summit, NJ. They had impressive pieces of antique furniture that, at least as I understood, they had managed to get out of Germany.

As an adult, Nora moved to Hawaii. That seemed to me a very romantic place to live.  

All in all, the Solmssens seemed to me to be rather like royalty. I was very impressed with them. 

Of course, too, my second cousin, Nora's first cousin, Arthur Solmssen, wrote a historical novel called A Princess in Berlin, based on Solmssen and Mendelsohn family stories. In the novel, one of the family members was a legal princess. In reality, there was no one who was legally a princess, but they lived that life. 

The Solmssens also tended to be tall. I think that increased sense of awe with respect to them.  In any case, children tend to be easily impressed by adults. 

And yet, despited all this, my cousin Nora died fairly young of breast cancer. I remember my father telling me and being disconcerted. How could this beautiful, graceful, vibrant person die so young? I thought she must have had incompetent doctors. 

Her father Max has breast cancer as well, but he managed to live to be ninety one. He outlived my father who was eight years younger, but then my father was in a radiation accident in Los Alamos. 

But it was the story of Nora and Max's cancers that made me seek Ashkenazi Jewish type BRCA mutation testing. 

My mother's family didn't have breast cancer at all. They are all WASPs. There were more of them and more closely related. I always thought that I would be like them. I was surprised that the genetic counselor didn't even know that WASP meant English ancestry. Perhaps she never even sees WASPs. 

I never thought of myself as really connected with the more distant relatives on my father's side, but, sure enough, I have a typical Ashkenazi Jewish BRCA 2 mutation that caused my recent Ovarian cancer.  Despite the apparent distance of our relationship, Nora and I apparently share this mutatino.

So I'm thinking of beautiful Nora now. 

Last I saw Arthur he was writing a real history of the Solmssen and Mendelsohn families, but I don't know if he ever finished it.  I hope he does finish it.  I think it would be fascinating.

Fantasies of being an Amazon

I tend to fantasize a lot: really a lot.

Not all of these fantasies are positive. For instance, if I have a crush on someone, I might spend just as much time imagining what it would be like to have a fight with him, as I would spend imagining romantic love scenes.

A big fantasy that's been occupying me recently has to do with having BRCA gene mutations. I heard about Angelina Jolie, about how she was told that she had an 87% chance of developing breast cancer, so she had a preventive double mastectomy. I knew that these mutations were associated with ovarian cancer as well as breast cancer. Two women in my gyn cancer support group who have these gene mutations have had ovarian cancer and not breast cancer, but are being followed for both breast cancer as well as recurrence of their ovarian cancer.  One of them takes tamoxifen.

I became convinced that I had these genes as well. My father's side of the family is all Ashkenazi Jewish, which is a risk factor.

My paternal grandmother had breast cancer, albeit with onset at age 68. I never knew her family. They may have all died in the Holocaust, or they may have been estranged somehow. My mother said that she thought that since that family had converted to Catholicism they did not like my grandmother marrying my grandfather. He wad officially Lutheran, but his sister married Georg Solmssen who was a prominent Jewish banker, so the Barschalls seemed more Jewish, our at least weren't Catholic. My Fahey later cast some doubt about the estrangement theory, as he says he remembered having some contact with members of his mother's family when he was a child. In any case, for whatever reason, my grandmother's family is a big question mark for me.

My father was an only child so there was limited information about genetics there also. Still, he had a male first cousin on his father's side, inner of the sons of the famous Georg Solmssen. That cousin had breast cancer in advanced age, though nevertheless lived to be ninety one. That cousin had a daughter who died of breast cancer fairly young, in her forties or fifties.

My mother's side of the family was fairly clear of cancer. They were WASPs. Women in my mother's family tend to die slow, lingering deaths with multiple strokes and/or Alzheimer's, making them into vegetables or childlike, before they went.

My father died of kidney cancer. He was 81 and it had metastasized all over his organs by the time it was discovered. He refused treatment and died three months later. He had been in a radiation accident in Los Alamos. His urine was radioactive after that accident. I attributed the cancer to the accident. He also had huge black, hairy lesions all over his back that he had refused to get treated for years, which were likely cancer. I suspected those were from alpha radiation to his skin. He claimed never to have had a tan or sunburn on his back.

He didn't think his cancer was from Los Alamos. Other physicists who got cancer had gotten it much earlier. He thought this was too much later. I attributed that opinion to denial. Los Alamos was the most wonderful, exciting thing that had ever happened to him. It gave his life meaning that, after being a refugee from the Holocaust, he could participate significantly in the war effort against Hitler; even though he was an enemy alien and even though,  ultimately,  the bomb was used against Japan instead. Many other physicists had gotten beryllium poisoning, and he hadn't. He couldn't stand to imagine that his work there had ultimately killed him.

In any case, I could have all sorts of strange mutations due to my father being in a radiation accident. I grew up with my mother being very nervous about xrays. "Your genes have been irradiated enough," she would say. I thought about that when I was having a catscan yesterday. I had the catscan anyway, but it worried me.

So, you see, I have been persuaded that I must have BRCA gene mutations, whether from my ancestry, or from the radiation accident.

And, I've been persuaded that, like Angelina Jolie, I was going to have to have a preventive double mastectomy.

Therefore, I've been fantasizing about life without breasts.

I've never liked wearing a bra. They hurt my back. They itch.

I don't like the idea of plastic implants. I've read that they have to be replaced every ten years. I don't relish the idea of more surgery in ten years, if it can be avoided.

I used to have long hair, which I cut off in 2004, after hair blowing in my eyes was a significant contributing factor in a serious auto accident. When my hair was long, I used to keep my barrettes, elastic bands,  and combs in a large glass jar. I noticed a vile, chemical smell every time I opened that jar, so I surmised that the plastic gadgets in there were outgassing something.

I read an article in Science News about a museum that held plastic artefacts. The museum noticed that, when the objects were about fifty years old, they disintegrated into toxic chemicals. The suspicion was that they had been slowly disintegrating for years, but had only been visibly affected at the end.

In my family cottage, we had some very old plastic plates that also started breaking spontaneously. I had a very old bottle brush in my kitchen. The plastic handle of that brush started breaking and I had to get an new one.

I already have two plastic devices surgically implanted in my body. I fear that the first one may have contributed to my cancer, though my doctor emphatically denies that this is possible. It's probably more likely that the low level hormone replacement I was doing was responsible, that and my chronic refusal to allocate enough time for sleep.

Still, the idea of more plastic devices in my body, for purely cosmetic purposes, struck me as scary.

Also, from a psychological perspective, the idea of being a breastless Amazon had a certain appeal. I've long had a lamentable tendency to get crushes on gay men. Maybe they would like me better with no breasts? Also I'm trying to become a performer. Maybe I would attract the attention of casting directors better if there were something really odd about me like that?

I had this whole scenario worked out in my brain. I had a long time to work on it. I was waiting five months to see a genetic counselor at Sloan Kettering. The Angelina Jolie effect has created quite a run on these folks recently.

I went to see her yesterday. She agreed that there was cause to test me. Also the new laws preventing discrimination based on the results of genetic testing, and preventing genetic testing results from being a preexisting condition for insurance purposes, would protect me from adverse effects.

Then we video conferenced with the doctor in New York City. That's an interesting twist in medicine now. I can get treatment in the suburbs here and video conference with a doctor who is elsewhere.

This is where reality intervened. He told me that my chemo for ovarian cancer will have killed cells that might tend to become cancerous in my breasts. Therefore, even if I have BRCA gene mutations, my risk of getting breast cancer, at least in the next five years, is now similar to that of the general population.

Moreover, they would not recommend any elective major surgery in the next year, as my body is already weakened, and my chances of recurrence of ovarian cancer are much higher than my chances of getting breast cancer. The weakening effect of surgery could make the treatment of any recurrence more problematic.

Therefore no preventive mastectomy.

Tempest in a teapot.

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Addendum 6/5/14

Genetic testing reveals that I do indeed have a mutation on my BRCA2 gene which is typically found in Ashkenazi Jews.

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Addendum February 2016

Now they're saying that maybe I should have the surgery if I'm still in remission 5 years out, so this may be reopened.  I've been thinking about it a lot, because one of my friends is having a mastectomy because they're gender fluid.

My breasts have been useful. I nursed my first son for 22 months and my second son for 36 months.  I found nursing to be an extraordinary experience. I was riveted by it.  I pumped at work. I was in La Leche League. 

Even I came to feel that breastfeeding explained my childhood obsession with vampires, that I had subliminally wanted to nurse a child all that time, hence the feeling that vampires were so fascinating.  I used to think, particularly of my older son, when he was still nursing, affectionately as my little vampire.

Of course, they're no longer useful in that way.  

I did read this article about a woman who developed a genetic treatment that would lengthen the telomeres in human cells.  This would in some sense, theoretically, make the treated person 20 years younger.  If I were suddenly 20 years younger maybe I would still want to nurse a child, even though I can no longer bear one, due to surgery for cancer.  But that all seems very unlikely.

So, back to the amazon fantasies, if I can resurrect them.  I just bought 4 bras recently.

What is wrong with surveys

I wrote this sketch to illustrate what is wrong with telephone surveys, like this latest one that says 1/4 of Americans think the sun goes around the earth.

I wonder what percentage of people, interrupted in their daily activities by unwelcome phone calls, feel compelled to give serious, correct answers to questions.

ⓒ ANNE BARSCHALL 2014

Musings on New Year's Eve and Fireworks

I spent New Year’s Eve online on twitter – under my pseudonymous account –  tweeting back and forth with Josh Groban and his fans. He was home alone.  I was home alone.  He said he had pink eye, though he may have been joking about that.  I am recovering from chemo.

I had the opportunity to go up to powellhouse.org, but decided I was just too tired.  My ex and my sons went.  They all came back with colds.  I’m glad I didn’t go, as I’m immune compromised and shouldn’t be in close quarters with people who are sick.  Since bathrooms are shared there, bugs go around pretty fast.

I had fun tweeting back and forth with people.  It was quiet.  There was no issue about being on the roads with drunk drivers. 

Later I watched the YouTube videos of fireworks in London, Dubai, Singapore and Taiwan, in that order.

Obviously, Dubai won – hands down, no contest.  Those fireworks were extraordinary – and kind of scary.  It’s amazing if no one was injured.

I am thinking, tho, I’m glad I saw it on YouTube and not in person.  It would have been noisy.  It would have been smoky. 

I’m thinking back on fireworks displays I saw as a kid.  I grew up in Madison, Wisconsin, USA.  This was the fourth of July. 

We went out to a local park where the city put off the legal fireworks.  We put on lots of OFF!, because Madison is very buggy in the summer.  We sat on a blanket on the lawn.  The people shooting off fireworks were situated at a safe distance from us.

They shot off one firecracker at a time into the sky.  As each one went off, the whole crowd would say “oooooo” softly, in awe, because they were very beautiful. 

There was some time between each one, maybe a minute.  We could watch them go up into the sky, while we were waiting.  They made a sort of whistling sound and a slight sparking at the back of the unit as it rose, so you could track it, so it wasn’t dull waiting. 

There were a few that were merely loud, like the bang of a cannon ball, and made a bright light.  There were a few displays on the ground, on frames, that they lit up and they made sparkling pictures. 

At the end they had a finale, where they shot off maybe twenty or thirty at the same time.

I think it took about twenty minutes.  It started at 9pm.  We were home by 10.  We had some handheld sparklers that we could use at home & draw pictures with in the air.  I liked those, though now I think they’re considered too dangerous for kids.  We didn’t get hurt, fortunately.  Also, we had some caps that we could pound with hammers on the sidewalks during the day before.  Those made a banging noise.

We thought it was cool.  We had no clue what might be in the future for fireworks.  The idea of what just went on in Dubai couldn’t even have occurred to us.

When my mom was a kid, they just had a small cannon and a few small fireworks at home, which was even smaller than what I had.

When I think about it, I wonder if we’ve gained anything here. 

Quantum mechanical entanglement and ESP

I would like to start out by describing two incidents.

The first incident happened to my grandfather and was passed down to me as oral history, by my mother.

My grandfather was a hunter.  He went on a safari in Africa.  His guide on the Safari was a man from England.  

About 20 years after the safari, my grandfather suddenly wondered what had happened to his former guide, so he sent off a letter to England, from New York.

He got back a letter from the guide's widow saying that the guide had been mauled and killed by a lion on the day that my grandfather wrote the letter.

The second incident happened to me. 

I was having natural childbirth at home, here in Tarrytown, NY.   

There is a part of labor called "transition."  This is when the contractions transition from dilating the cervix to pushing the baby out.  Transition is commonly thought of as the most painful part of labor.  I'm not sure, in retrospect, whether it was really the most painful or whether, rather, it was the most emotional, possibly due to massive internal hormonal changes in changing from one type of contraction to the other.  

In any case, when I went into transition, which is the time when women in labor get most emotional, called out "Mommy."

Now, we had not told my mother that I was in labor.  I wasn't getting along with her that well at that point.  It was 10 days before my due date.  She was in Wisconsin, while I was in New York -- about a thousand miles away.  

The phone rang almost immediately after I called out "Mommy."

The woman who was assisting wanted to know if I wanted to talk to her.  I did not.  I had only called out her name reflexively.  

Still, it was fairly amazing that she called just at that moment when I called.  It is said that mothers always know when their daughters are in labor.  

I am thinking that these incidents can be explained by quantum mechanical entanglement.  

If two people have entangled particles -- and those particles are separating from each other in some traumatic way -- then there may be some kind of transmitted reaction that can be sensed in some way by the person whose particles are not separating.

I suppose others may have written about this, and I haven't researched it, but I just wanted to memorialize my experience.

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Now also, when my father had cancer, I had phantom sensations which seemed like they might be related to his tumors.  It was easy to dismiss this as imagination, but then I wonder really if it was imagination or whether, again, it might have been attributable to quantum mechanical entanglement of some kind.

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Addendum 9/10/15

Also Lisa Marie Presley reported crying all day the day Michael Jackson died, before she learned that he had died.

Here's a link about Quantum entanglement https://en.wikipedia.org/wiki/Quantum_entanglement  Quantum entanglement can occur due merely to physical proximity of particles.

I do not believe that what happened to Lisa Marie was a coincidence. When we are in close proximity, our subatomic particles become quantum mechanically entangled. Entangled particles are able to communicate with each other somehow, even when separated. It seems to me that if something happens to the body in which the entangled particles reside then your particles could possibly sense it.

MIT article about entanglement

FDA Bans Trans Fats

Oh, great!  The FDA has decided that trans fats are too dangerous to put in food.

When I was a kid, everyone thought that butter was unhealthy.  Even though I grew up in Wisconsin, the dairy state, my parents bought into this fad.  

At first, Wisconsin outlawed the use of food coloring in margarine, because they felt that this food coloring was misleading in making margarine look like butter.  This meant that Wisconsin margarine was white.  I guess they couldn't outlaw margarine entirely, since corn, which is used to make margarine, is also grown in Wisconsin.

Later, they sold margarine in plastic bags with a food coloring tablet enclosed in the bag.  We could crush the food coloring into the margarine and then manipulate the bag until the coloring was distributed throughout the margarine, so it would look yellow.

My father used to bring back margarine from Illinois, when he went there, because you could get yellow margarine from Illinois.

More recently I've seen more and more researchers saying that there is no evidence that eating cholesterol causes cholesterol in the blood stream.  I saw a report of one piece of research finding in a small group of older women with diabetes that eating cholesterol actually lowered their blood stream cholesterol.  Moreover there have been articles stating that cholesterol may have a protective effect against cancer.  I've also seen anecdotal reports that cholesterol is good for the brain, especially for people with autism spectrum disorders, which run in my family.

My parents were so well-meaning.  Yet, somehow, it never occurred to them that the margarine might be more dangerous than the butter, or even that the margarine might be healthier without the food coloring. 

In retrospect, that should have been obvious.  Butter has been around for thousands of years.  Margarine was a new experiment.  Yet doctors, without any research backing them up whatsoever, were recommending this dangerous new substance and saying that it was safer than the older, tried and true substance.

Given that I'm having a health issue right now, I start to wonder what consequences that medical advice is having for me.