Category Archives: sister

by

Who would I be?

If I have had PANS since birth, who would I be if I had not contracted it?

No one knows. We are still arguing about whether PANDAS and PANS exist. But, my daughter says, we make up all the words. The definitions of illnesses CHANGE over time, and what an illness MEANS. Tuberculosis was an illness of poets and people too noble for this world, until microscopes became advanced enough to see the tiny bacterium, and then it became an illness of the crowded unclean poor. Medicine and science continued to study it. Once we recognized that it is an airborne illness, tuberculosis sanatoriums were set up, to quarantine people. My mother was diagnosed with tuberculosis when she coughed blood 8 months pregnant, so I was born in a sanatorium and avoided contracting tuberculosis as a newborn.

Antibodies cross the placenta, even though the tuberculosis bacterium does not. Usually infants contract tuberculosis and die, at least when I was born. The antibodies can trigger PANS or PANDAS.

The antibodies prime the fetus’s immune system. This makes sense, right? The fetus has a sick mother and best if its’ immune system is ready to fight.

Did my younger sister have it? I do not know. Not as badly, would be my guess. My mother said that as kids, we’d both get sick, but I got sicker. We both had strep A many times. My sister got mumps, off from school for three weeks, and I did not get it. But I got everything else.

Now the estimate for children with PANS or PANDAS is 1 in 200. This is enormous. A high prevalence. Antibodies, that I suspect are adaptive and lie in readiness for a pandemic or a crisis. And now we have had another pandemic, with the last really world wide bad respiratory one 100 years ago. Is the prevalence rising because of the pandemic or are we figuring out some of the cause of behavioral health illness or is the definition of illness changing or all three? I think all of them.

My cousin’s mother had polio either during her pregnancy or very soon after. My anthropologist uncle took his family to Bangladesh, where he was doing linguistics. So does my cousin have PANS or PANDAS? I do not know.

And what of my children? My pregnancy with my older child was fourth year medical school and went well. My pregnancy with my second was very complicated. I was in my first year of work as a rural Family Practice doctor and working too hard. I ended up on bed rest for three months and on a medicine. Is labor at 23 weeks an illness? Does it affect the fetus? I was on medicine from 23 weeks to 37 weeks. What effect does it have?

Medicine is still changing and changing quickly. We don’t know. There is so much we do not know.

_______________

PANS/PANDAS: https://www.pandasppn.org/guidelines/

_______________

The photograph is me and my sister, in about 1967ish. I do not know who took it.

by

puppets

My sister Christine Ottaway died in 2012 of breast cancer.

I took this photograph at Christmas in Alexandria, Virginia in the late 1970s. I am three years older and made her stuffed toys and puppets for years. The first one was a stuffed snake that I sewed by hand, of brown flowered fabric. My mother was very unconvinced about it, but Chris and I had both longed for the giant velvet snakes at the County Fair. We failed to win one. The snake I made her was only two feet long, but she loved it.

I made the puppet on the left and bought her the one on the right.

It’s lovely to still have the photographs and memories.

by

Keep

The older we get, the more we learn
which bridges to cross, which bridges to burn.

What shall I keep?
And shall I burn that bridge before I cross it
or after?
I did not know that was a bridge
I would burn
And I grieve as a I learn
But the sledgehammers and bombs
loosed by the family
have left a bridge
that is all but falling
Into an abyss.
It is stone and old.
It won’t burn, but it barely holds together.
One heavy rock, thrown in the middle
and it will fall
down down down.
What shall I keep?
What shall I let go?

I wonder what my parents think
and grandparents
and sister.
Do they think at all
or do they let go with death
and let joy overcome them
in reunion with the Beloved.
I hope where they are is joy.
It is ok, loves.
It did not turn out well
but people make their choices.
I can’t rebuild the bridge alone
and on the other side they prepare new IEDs to blow me up
if I attempt to rebuild
or cross.

I keep my children away
from the web of triangulation
and so they are not attached to the land
nor do they play the family games.
I am so glad.
I am still attached to the land
and my dead.
Not the living but the dead.
My sister, my mother, my father
grandparents, uncles, aunt.
All the dead.
Forgive me, but I can’t keep the bridge
going
and I will let the land go.
My children and I will be dead
to those living.
We have family and friends
who are loving and not hating
and not cruel.

I still love my dead
and even though the place reminds me of them,
they are not there.
They are in my heart.
I keep them safe
and let the bridge
and the land
go.

____________________

For the Ragtag Daily Prompt: keep.

My sister is paddling the canoe. I took the photograph, in about 1980.

And here is music:

by

Hunted

I am having an internal argument.

It’s about shacks on a lake in Ontario. My grandparents and family built the shacks and I’ve been going there since I was under a year old.

However, my sister died of cancer in 2012 and there was a horrific family battle over my niece. My mother had already died. My father died 13 months after my sister and left the same will as my mother. Unfortunately it was written when I was a minor. I cried when I read it because I was the only person named in it who was still alive. I knew what my father wanted, or remembered what he told me. A will is a will though. I took it to an attorney and followed her interpretation.

Then I was sued by family regarding the niece.

I knew what my father wanted but he had not done it. So I decided not to fight it and handed over half the estate. Because even though my father wanted me to watch over his granddaughter, he had not left me the tools. And she did not want me.

So back to the shacks. It’s the side of the family that brought in all the lawsuits. I have not felt welcomed there nor loved since my sister died.

Part of me is furious that I am being hunted out, unwelcomed, wants our grandparents to curse them.

The other part points out that I have already been hunted out, effectively. I stopped trying to take my children there because I couldn’t tell who in the family was “neutral” (basically not talking to me) or “gossiping” — the rumors re me trying to harm my niece were incredibly painful. I had to let her go.

After my father died I dream that I am issued a huge SUV, black. I am to go pick up three children. When I arrive, two are teens: my two. The third is a toddler. My niece is really the same age as my daughter, but not in the dream. In the dream, they tell me, “You can’t take the toddler. You don’t have a car seat.”

I say, “Can I go get one and come back?”

“No.” they say.

I say, “Please, can I borrow one? I didn’t know I needed it! I was issued the SUV!”

“No.” they say. “You can only take the two teens.

So I took the two teens and left, crying.

I woke up and thought: my father’s will is not my fault. I did the best I could. I followed an attorney’s advice and I tried to do what my father wished. I did not have the tools I needed.

Now my children and I may get an offer to buy our share of the land. My children are ready to be bought out.

I do not know if I am. I feel like this is the last connection with that side of my family, not only the living, but the dead. I love the land far more than the silent living and the cruel living. Why are families so cruel and why do they need enemies so badly? Gossip is a sin, truly, and hurts. Selling my share is saying goodbye to my sister, my mother, my father, my grandmother, my grandfather, my two uncles, my aunt. I don’t mind saying goodbye to the cruel living nearly as much as to my dead.

And that too makes me sad.

by

Weight

Sorrow weights my chest like lead: breathing
is hard. Today I can cry for a minute or so
and then that is over. Sorrow teething
tearing at me from inside like a crow’s
beak sharp pointed poking grabbing tearing
winter break approaching everyone goes
insane buying drinking drugging bearing
the cost into the New Year deepening woes
I miss the dead: father sister mother
Read my mother’s journals when I am ten
She writes about art and us and other
friends dead. Her voice clear again.
My mother is my age when she dies.
Her younger voice: memory smiles and cries.

by

We want to believe

My cousin said to me once: “We want to believe what we want to believe.”

This was right before Mr. Trump was elected President.

After my cousin said that, I was unsurprised that Mr. Trump was elected. He was elected out of fear and anger and shame and grief. He was elected by people who are afraid that people rising out of discrimination will take things from them. Lower their standard of living. They are afraid that they will have to give things up.

A friend was working on my boat. He said that if I paid in cash, it would be less. Because, unspoken, he would not report the income. I thought about it. I said, “My medical practice is mostly medicare and state insurance. That is paid for out of our taxes: yours and mine. Therefore I am giving you a check and I don’t care if it costs more.”

There is a big culture here of not paying taxes. Cheat the government. Pay cash to each other, nod, nod, wink. It is tempting, takes a percentage off what I pay. But…. the people who I know are doing this are mostly conservative. They say drain the swamp. They say the government is cheating us. But THEY are cheating all of us.

I asked my cousin why he and my maternal family believed a story masterminded by my sister. That my father and my neice’s father and I were villains. One of the villainies was the our grandmother’s money had paid for MY graduate school but not my sister’s graduate school.

But that is not true. My grandmother paid four years of medical school tuition. 21K. I paid my own loans.

After my grandmother died, and then my mother died, my father used “my grandmother’s money” to pay off my sister’s graduate school loans. 36K. My parents also cosigned on a house, that my sister walked away from. They wrote 30K off thier taxes that year selling it. My father bailed her out of 7K on a work credit card. My father called me crying when she bullied him out of another 30K for another house. And that is when I said to her ENOUGH. I refused to visit for a year: until she went into hospice for her cancer. I visited three times while she was in hospice. We made peace. But she did not tell anyone else the truth.

I said to my cousin that I could send the bank statements showing that my father paid for my sister’s graduate school. That is when he said, “No. We want to believe what we want to believe.”

I thought really? So you want to believe my sister because she is dead. We will not speak ill of the dead, so you are ok with me and my father and my niece’s father being villainized and you will not even look at the lies.

VOTE and VOTE against FEAR, SHAME, DISCRIMINATION, ANGER AND GRIEF. We have to stand up. I loved my sister even when she was dishonest and bounced 1000$ worth of checks in my small town with people I knew. My father got threatening phone calls and he paid. That was the last straw for me.

So guess which politician stirs up fear and hate and discrimination and anger and grief? Well, honestly, both sides are guilty of that, but I stand against discrimination. We all shall rise up.

Love and Blessings and Peace you.

The photograph is on one of the last three visits to my sister. She died in March 2012.

by

Songs to Raise Girls: three songs

The Ragtag Daily Prompt today is memorize, and oh, what I have memorized! I saw a t-shirt at the Nowhereelse Festival in Ohio that said, “My memory is 80% lyrics.” Yes, me too, a mix of songs, poetry and books that I have read. My sister Chris and I were busily memorizing songs as soon as we could. Here are three very educational songs for young girls. The last one we learned from our cousin, who was a girl scout and a girl scout leader. She was in the calendar one year, making cookies. I was very very impressed and a little jealous.

I bought a four hour recording session at a silent auction and the recordings are me and my sister and my father. We did them in two sessions. We made a list of songs and lost it immediately so we all took turns suggesting songs. My mother had already died of cancer. My sister died in 2012 and my father in 2013. I am so glad to have these recordings. We called it Mocoko for Malcolm Ottaway, Chris Ottaway and Katherine Ottaway. We sang most of them just once and so they are not polished, but I still am happy to have them.

Bridget O’Flynn

I sang Bridget O’Flynn to my daughter when she called me about dancing. “Mom! I love to twirl!” Um, well, yes, your parents met at a contra dance at Glenn Echo Park in Maryland. We love to twirl too.

Late in the evening

A cautionary song, an old barbershop quartet song, that we sang.

Fascinating Lady

I wonder if the girl scouts still sing this.

The photograph is my son scaring me. Ok, that boulder is sitting there balanced BUT! GET OUT OF THERE! Taken in Palm Springs in 2011 up on the mesa. Beautiful.

by

I am the princess

I woke this morning thinking about a poem my sister wrote, titled I am a princess guarded by dragons snorting and grumbling and rumbling in wagons.

I am the princess guarded by dragons snorting and grumbling and rumbling in wagons

I am the princess guarded by dragons
snorting and grumbling and rumbling in wagons
I am the princess surrounded by briars
with wretchedly nasty folk starting briar fires
I am the princess with long, tangled hair
I cut it myself and I climbed down from there.

I am the princess, asleep ’til a kiss
woke me, he shoke me, all after was bliss
I am the princess who sat at her wheel
spinning, my fingers bled, hating the feel
I am the princess for whom you fought wars
Raggedly, jaggedly, murderous spars.

I am the princess, a wildvirginqueen
commanding with glory that none had foreseen
I am the princess who made wild things grow
I fought for my daughter, in winter below

I am the princess, I wore a great gown


Now cowboy pjs, I’d rather dress down.

by Christine Robbins Ottaway

________________________________

I did not want to be a princess when I was a girl. It seemed like a dead end career. The happiest day of a girl’s life was when she got married and what happened after that? Well, in the Disney animated movies, all adult women were either evil witches or evil stepmothers, or dead in childbirth. Until recently there were no live adult women on the throne who were not evil. And certainly the Queen in Frozen II has been attacked mercilessly by the Internet for being a woman without a man. Perhaps it would be okay if she were named Elizabeth.

I wanted to be a superheroine, not a princess. A secret identity was great and Spiderman had just as much angst as I had. I could be myself AND a superheroine. Princess seemed impossible and you had to be nice all the time and you had to talk to mice or spin straw into gold or be the daughter of a king. I did not want it.

Once I went to the Unitarian Church and my minister gave a sermon on each of the four types of Unitarians. That day was about mystics. I thought “Mystics, what hooey!” but by the end of the sermon I thought, oh, I’m a mystic. And a secret romantic. How exactly do I square that with my refusal to have anything to do with Princesses.

My sister was much more comfortable with the Princess Archetype than I was. I wanted a career that would support me and children, because even if my wedding was supposed to be the happiest day of my life, I still noted that half of marriages ended in divorce. And what about men? Almost no one celebrates the virgin male and I don’t think I’ve ever heard anything about marriage being the happiest day of a man’s life. What is the story there?

My version is titled: I am the princess

I am the princess guarded by logic
By science, degrees and words pedagogic
I am the princess staying in school
seeming obedient to misogynist rule
I rack up a degree, residency next
study the landscape, study the texts

I am the princess who longs for a kiss
various frogs taste worse than horse piss
I am the princess flaying a man
who was already dead, to learn what I can
I am the princess, no wars fought for me
I fly under the radar, no one can see

I am the princess, perhaps I’m a queen
hide in a small town, nearly unseen
Treating my people while staying awake
Try to avoid being burned at the stake

I was a princess hiding from most
raising my offspring, I’d rather not roast

__________________________________________

The photograph is from the Great Port Townsend Bay Kinetic Sculpture Race and is not me or my sister.

My sister’s blog: https://e2grundoon.blogspot.com/2009/01/chemo-not-in-vain.html

by

Is this a tree?

Is this a tree?

I would not call this a tree. I would call it a cone. It contains seeds. It is not a tree.

A pregnancy is called an embryo until 8 weeks after conception and then a fetus until birth. It is not a baby, any more than a seed is a tree. Here is a link to a picture of the embryo developing:

https://en.wikipedia.org/wiki/Human_embryonic_development#/media/File:HumanEmbryogenesis.svg

It’s a bit difficult to call the embryo a baby.

After 8 weeks (10 weeks from the last menstrual period) the developing pregnancy is called a fetus. It cannot survive outside the womb. A term pregnancy is 37 weeks, and the due date is at 40 weeks. The earliest survival, certainly not natural, is around 24 weeks. This takes heavy intervention and technology, a premature infant on a ventilator for months. There is risk of damage to the eyes from high oxygen and risk of spontaneous brain bleed and cerebral palsy, because the newborn can weigh half a pound. Once born, the fetus is termed a baby.

This is important from a medical standpoint and pounded into us as physicians. WHY? Because in a trauma situation, the life of the mother comes first. In Obstetrics and Family Medicine, the life of the mother comes first. In Oncology, the life of the mother comes first. My sister was diagnosed with stage IIIB ductal breast cancer at age 41. She was engaged and it turned out that she was pregnant. She wrote this essay on her blog, Butterfly Soup:

The hardest loss of breast cancer.

She had an abortion and chose chemotherapy, because it was her or the fetus. If she had chemotherapy pregnant, at that time she was told that it would probably kill the fetus or cause terrible birth defects. If she held off on chemotherapy for seven months, her oncologist thought she would die. She had a very very aggressive cancer and she already had a daughter who needed her.

She lived until age 49, with multiple rounds of chemotherapy, radiation, gamma knife radiation, whole brain radiation. And she lived until her daughter was 13. Without the abortion, her physicians thought she would have died when her daughter was 7.

My ethics in medicine are that patients have autonomy. I would NOT have wanted my sister to choose to refuse chemo and try to bring a baby to term while dying of breast cancer. However, it was HER CHOICE, not mine. It was private and no one else’s business and how dare people make moral judgements about another person’s medical choices. I give my patients CHOICES. They can choose not to treat cancer and go into hospice. They can choose surgery or refuse it. They can choose to treat opioid addiction or refuse. They may die of a heroin overdose and I grieve. I try to convince them to go to treatment and I give them nalaxone to try to reverse overdoses. I refuse a medication or treatment that I think will harm my patients, but my patients have autonomy and choices. That extends to women and pregnancy as well.

It is NOT a baby in the womb, however emotionally attached people are to this image. It is an embryo first and then a fetus. And in a car wreck, the woman comes first and the fetus second.

For the Ragtag Daily Prompt: explain.

by

soft foot and arms too

Tenderfoot reminds me of my sister and our family’s summer visits to Lake Matinenda. We lived in tents. My grandparents and aunts and uncles and cousins were all in cabins.

We were always the last to head home. We usually mislaid our flipflops, towels, t-shirts and flashlights, so we head down the path in the dark. When I was little I have cuts every summer in the arch of my foot. I learn to walk in the dark on the path with the foot curled and lightly, so that if there is something sharp I can change weight to the other foot. If there are two sharps in a row, usually rocks, I get cut anyhow, but less often. I still love to take my shoes off on the paths there.

I would go this summer except for the oxygen. We did not bring in electricity. I do not quite feel up to acquiring a solar panel/battery combination that is adequate this year. It’s also the heavy lifting. We drink the lake water and bring it up in buckets. We do filter it, but carrying the buckets. It just does not seem like a brilliant idea alone with my lungs still challenged.

Anyhow, here is another soft footed and soft armed creature. This is taken at the Baltimore Aquarium a few years ago.

For the Ragtag Daily Prompt: tenderfoot.