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Tapati
22 May 2013 @ 08:26 pm
Update: I am revising my memoir entries at another blog I have on wordpress: http://tapati.wordpress.com/

All of my memoir posts and other original posts are copyrighted. You are welcome to provide a link to my posts with a short excerpt to catch someone's attention, just as I do with others' material, but please don't reproduce entire posts. Thank you!

If you have followed the link from my guest posts on the No Longer Quivering blog, you may be interested in my other memoir entries. Please keep in mind that these are rough drafts intended to establish the sequence of events and reveal some of the themes of my writing. The finished product may look very different. I am also not putting everything online for obvious reasons.

If you find my memoir posts interesting, please consider supporting my writing efforts by using the Paypal donation button located on the right of my journal pages. Thank you so much.

 
 
Tapati
22 May 2023 @ 02:22 pm
City lights can be structured to avoid the haze of glare that obscures our stars. Learn more.

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Tapati
30 November 2018 @ 12:07 pm
I was sent to radiology for x-rays of my feet, primarily my big toe joints. Over the last decade I've grown increasingly anxious because my back has grown more painful on a good day and often the positions I'm asked to move into hurt. Both my lumbar and cervical spine have problems and I cannot lie flat without severe pain. Yet that is what was required for these x-rays. However, it wasn't necessary. And I saw various types of wedges nearby as I left that could have been used. I did ask for a second pillow since the one I had wasn't firm at all so my neck wasn't supported. Frankly I will never go back for an x-ray unless I bring my own gear. I now have a folding wedge and I have small pillows.

The other problem was a smooth sheet on top of a slippery surface. My feet kept slipping; there was nothing to grip on to. Nothing I can do about that unless I bring a mat with grip tape on both sides. SMH.

Everything I am finding on google about patient comfort or care in radiology is about alleviating emotional anxiety. How about helping patients who are not in their twenties or thirties not hurt themselves. I'm home icing my back now. I could barely get back into my car and out again once I got home. I was planning on going to the store while I was out but knew I had to come straight home.

My neck hurts too but not like my lower back. I hope I recover enough to enjoy my birthday. I wasn't even expecting to have an x-ray today.

I had the sense that while the x-ray tech was sympathetic, what I was experiencing was so far outside his own experience that he didn't really understand how severe my pain was. And he doesn't need to know--but should have been trained to accommodate it anyway. I'm going to have additional pain for days now--I know how this goes. They ought to have a repertoire of techniques to assist patients with limitations and you should be asked if you need them before you even get on their table. My back and neck didn't need to be in agony for FOOT x-rays.
 
 
Tapati
After a dramatic scene with my mom and grandma when Mom found my suitcases in her trunk during a trip to Keokuk, where I planned to catch a bus to the St. Louis temple, I was finally on my way. Grandma said she wouldn't give me my birthday government savings bonds she'd purchased for me every year if I left and I told her she could keep her money; I was not for sale.

Once I got to St. Louis and was picked up by devotees I found out that some of the women were in India and the few remaining had been sent to Chicago. I would be traveling by train to the Chicago temple.

My time at the temple was a mixture of things I loved and difficulties when I asked to remain there and found myself being groomed for selling books at the airport rather than serving the Deities inside the temple as I had been doing (making vases, sewing and other activities). I wanted to be a pujari. I knew I was too shy and introverted to make a good "book distributor" or "sankirtan devotee." I have written about this time in more depth here: https://tapati.livejournal.com/345999.html

The above entry includes meeting my first husband (Mike aka Mahasraya) and falling in love, a story which is continued here https://tapati.livejournal.com/346129.html where we fell in love (or lust) and tried to make it an instantaneous committed relationship. Since it was also my first serious relationship this was misguided at best. (Kids at home--don't try this!)

My mom had heard I left Missouri for Chicago and that I had left that temple as well. By Illinois law I was NOT free to leave home and be on my own without an emancipation process. She found me at the Salvation Army runaway shelter and they had to allow her to take me home against my will. I tried to argue that I had met someone (he's a magic man, mama!) and she said he could come too, as mentioned in the post linked to, above. He eventually went back to Chicago and Mom agreed I could at some point join him--then decided to move with me. This was part of her mental illness--Borderline Personality Disorder. She couldn't let go. In Chicago we shared a studio apartment and it was very cramped. We had a blow out argument one night and I had to flee. I met Mahasraya and we went to stay with a friend. We were trying to figure out which temple to "surrender" or move into when we ran into Swarupa, the devotee I'd been corresponding with in L.A. He invited us to come to L.A. and we could stay with him and his family while we looked for an apartment and a department to serve and be supported by. I got the rest of my stuff from my mom (a very tense scene) and we flew to L.A. on August 10, 1976.

This post https://tapati.livejournal.com/285762.html takes me from living in a Spanish apartment building on Watseka Avenue near the temple to losing our housing when I got pregnant the following year (1977) and staying in an unheated laundry room, sleeping on the cement floor and applying for welfare when Mahasraya found and then abruptly quit a job that could have supported us. He began abusing me soon after we moved into our first apartment and the abuse continued throughout my pregnancy and beyond.

These next two posts, https://tapati.livejournal.com/285953.html and https://tapati.livejournal.com/287585.html continue my account of violence amid childbirth and my son's first year, including an attempt to leave Mahasraya. I aborted that attempt which involved a plane flight to Hawaii. I was too afraid to be on my own in an unfamiliar place. It is a mark of how difficult my family was that I didn't turn to them instead.

I didn't realize that I was already pregnant with Ramya until the morning sickness (hyperemesis gravidarum) began. This post is an account of that period of time before I left once again after a terrifying incident of abuse that I felt threatened my pregnancy: https://tapati.livejournal.com/288309.html

I ended up sharing an apartment after a brief stay with my friend Nitai dasi. While I was renting a room in CV dasi's apartment I turned twenty. My daughter's birth was five months in the future. (Yes that means she will be turning 40 soon.) This is an account of that time and how I sadly got back together with Mahasraya: https://tapati.livejournal.com/289500.html
 
 
Tapati
Content Warning: abuse, neglect, poverty, insects, rodents, suicide, depression, dieting, body shaming and bullying

This was a very busy and consequential decade of my life. I'm sure that's true for most of us. We are changing rapidly and our education is laying a foundation for whatever we do in our future. I'm also sure I'm not the only person who was adversely impacted by my family's problems. There are many such stories about the ways your family's dysfunction or abuse can damage your psyche and your ability to prepare for your future. This is mine.

I'm going to split this into multiple posts. Even so I'm condensing quite a bit.

While Mom and I still lived in our trailer at Shady Acres Trailer Court, I was still enjoying the last bit of my childhood. There were a few troubling incidents but for the most part I was still having fun, making friends and reading great books.

For awhile Mom was dating my dad. This was as weird as it sounds. He broke up with my stepmother and I guess Mom was simply there, someone familiar. I went to one baseball game with him and it was so awkward I gave up talking to him and hung out with other kids there, competing to catch errant balls for a reward. It wasn't long before they had an argument and split up. Of course he disappeared from my life again. I learned not to expect much from him.

My mom had a mild heart attack and I was the one to call for an ambulance. Doctors decided it was her birth control pills, taken to even out her cycle, that caused the blood clot.

Her mood was volatile during this period and there were a few times where she had meltdowns that resembled a two year old's tantrum--throwing things, yelling, stomping, and generally out of control behavior. This terrified me. She'd had these tantrums throughout my life but these were far more extreme. Things were broken. She often ranted at me because some small action of mine was blamed as the cause of her behavior. This theme would later be echoed by my abuser and I fell for it because of these earlier experiences. Both people were saying that my behavior was so difficult to tolerate that this acting out was the only way to cope. Even if I didn't consciously agree, the idea sank in and took root, affecting my self esteem.

During this time, ages 10 through 12, I was often on antibiotics for what I now would consider post nasal drip from my allergies. Mom would latch on to any symptom I had and get a doctor to agree that it was something more serious and that intervention was needed. I had surgery on my ears to install tiny drainage tubes. She would also wake me up in the middle of the night for a dose of antibiotic so they'd be spaced out in four precisely timed doses. I was told at one point that I had rheumatic fever and had regular blood tests which registered an elevated SED rate, whatever that meant. I never heard a doctor say I had rheumatic fever, by the way, so I don't have accurate information about my childhood medical history. Doctors have passed away and I doubt records exist now. I was only able to get hospital records from the hospital in my home town.

I was told not to run or play vigorously because of this illness and so I was turned from a very active child into a more sedentary one. I was given a note for gym class to have someone run the bases for me in softball--which caused resentment and ridicule by classmates.

I was being taught that I couldn't trust my body even if it felt ok to me.

As the Viet Nam war began winding down the ammunition plant my mom worked at began layoffs. She had worked up to Government Inspector on the most dangerous line and was very proud of that. It was a horrible blow to her self esteem and to our life and finances. She couldn't find a comparable paying job in time to save our trailer or our car. Both were repossessed, though she managed to dodge the men trying to take her car for awhile.

I was still in sixth grade when we moved from the familiar trailer court to the edge of town in a house on 17th by two cemeteries. There was no trash service and everyone simply threw their trash into a large gully. The rat population was delighted by this and they thrived--and invaded our home to also eat our dog's food at night. We put out poison and one died inside the wall, causing a horrific smell for weeks.

My mom subsided into a deep depression. One day I discovered a will she'd written and I realized she was suicidal. I had no idea what to do about it other than try to cheer her up. I had long been taught that her moods were something I had to watch out for and try to change if I could.

Early in the summer we moved again. Mom had met a man and started dating him. He owned a house he wasn't living in at the time and we moved there. Mom settled in and began painting it. I got a large attic-like room at the top of the stairs. That was the summer I slept all day, watched Star Trek re-runs in the afternoon and went out walking all over town in the middle of the night. I've told that story elsewhere.

Just before I was to start 7th grade (Junior High School, 71/72)) Mom had a huge fight with this guy and was so angry she yanked the phone right out of the wall. This was in the days where the phone company owned the line and it wasn't something you could just snap out of the phone jack. It was mounted on the wall and hard-wired in. The phone company could charge you for that. Next thing I knew we were packing up and Mom had found a funky little house on the North side of town, N 12th, which had a hole in the floor and no shower or tub. Grandma helped to lay down some linoleum and paint the walls and we moved in. We had no money for heat at the time. Mom had a job with Motorola in Quincy IL and so she was commuting through that winter, never quite catching up on bills. We didn't get heat until late November. Her depression returned and I began to suffer from depression also. I was dealing with a new school, a funky house with no way to take a bath or shower, worried about my hygiene, and we had cockroaches. I had a huge phobia of cockroaches caused by a traumatic experience so I had difficulty sleeping. I was terrified they'd crawl on me at night.

At school I dealt with gym class and showers. Ironically, that year I WANTED a shower but not in front of other girls and not using the teeny tiny towel we were handed. Yet I did try to soap up and actually get a bit cleaner. I remember being cornered by my locker as I tried to dry off and get dressed quite often. I dreaded gym class as a result.

On my 13th birthday, December 2, 1971, I came home to an empty house where every dish was dirty. Mom didn't get home until later in the evening. I was fed up with the house and everything in it and I rage-washed every dish. I don't even recall what there was to eat. I'm sure on the weekend we went to someone's house and had cake but I can't remember that. Just the endless dishes.

Around this time mom had gone on diet pills. Yes they gave out speed to help women lose weight. Even my teen-aged cousin got some! It was the 70s. Watching family members go on and off diet pills with all the symptoms they had did not inspire me to do the same.

Later in the year Mom went into the hospital for a full hysterectomy. She had had previous surgeries on her ovaries for cysts. Now they were just taking out everything. Given her history of Munchausen's syndrome, I have no idea if it was warranted or if she talked a doctor into it. She was good at that. But this time it backfired. It took years for them to get her hormone supplements into the right balance for her and she went into the deepest depression she ever experienced (that I witnessed anyway). She went on welfare. In the summer before I started 8th grade (1972), we moved again as she lost the house (she had been purchasing it because monthly payments were cheaper). Now we were across town on Timea Street near the corner of 7th street in a white duplex. Again Mom painted (boy they really let you paint rentals back then, at least in Keokuk) and we settled in. I had a room upstairs and had to adjust to the sounds of a busy street as my main windows faced it. The walls were a swimming pool aqua, the floor gray-painted wood. At some point I got an overhead light bulb to match.

As my mom's depression deepened and she abandoned house cleaning and cooking altogether I mostly stayed in my room listening to my radio and reading. I visited my grandparents at their farm every chance I got, to escape the gloomy atmosphere and squalor. It was during one of those visits just before 8th grade began that my mom attempted suicide. By chance her father, Grandpa Glen, came over to see her. She wasn't expecting him. The odd behavior of her dogs made him ask the landlord to let him inside to check on her and he called an ambulance. My grandparents brought me to the hospital and her glassy eyes shocked and scared me. I felt guilty that I had so obviously been avoiding her company and wondered if I made her feel worse.

That was the year I began writing poetry and short stories, trying to deal with my questions and feelings. When I wasn't in my room I was visiting friends or going next door to borrow a phone to call friends. My mom's phone-yanking incident prevented us from getting a new phone line because she owed the phone company money. I had some very kind neighbors who never seemed to mind me knocking on their doors at random times in the afternoon or early evening to use their phone. I guess they identified with being a teenager and were sympathetic to what that's like without a phone.

I dieted heavily that year (72-73), aided by the filthy kitchen and lack of cooking by my mom. I'd gained weight eating maid rites while visiting with the young woman who worked in the evening. Looking back I think I had a crush on her. Since mom worked late and commuted that year I'd often gone to see Grandma at the Gold Bond Stamp store where she was working, get a little cash and then go eat Maid Rites (loose hamburger meat sandwiches). I weighted 180 or so and hated my body. Plus a year of body shaming after gym class had taken its toll on my self esteem. For most of that year I ate only school lunches and the occasional one slice of bread ketchup sandwich at home if my stomach hurt. I lost 30 lbs but was ultimately frustrated that I could not drop below 150 lbs no matter what I did. Walking to school and back and up and down stairs plus gym class was plenty of exercise. All the weight I thought of as excess was from my waist down. Once I hit puberty I was always a size smaller on top (at least) than on bottom. Sometimes two sizes different. In December of 1972 I turned 14.

I recall being quizzed by the "mean girls" regularly about what I was, or wasn't, eating. I held my starvation dieting like a shield though it did no good. I received no social approval, only disbelief and scorn that would make me redouble my efforts to starve the weight off.

I didn't make the connection but I began to get dizzy going up stairs and nearly passed out. Mom was oddly excited and made an appointment at the University of Iowa hospital for a full work up. They did everything from IQ tests to blood tests, an exam and probably psychological testing. Nothing explained my dizzy spells though mom's theory was epilepsy. That's why she was excited--it would be a serious thing to have and that would bring attention. I didn't understand it at the time but later I began to realize she had some weird investment in me being very ill.

Our dining room ceiling fell in and when our landlord, who lived in the other side of our duplex, came over to see it we couldn't hide the filthy state of the house or the cockroaches we'd apparently brought from our old home. We were evicted. He was furious and cussed Mom out. We found a nice apartment on the other side of town, 7th and Grand, a converted Victorian house turned into apartments. Our landlords lived across the street and also my soon-to-be 9th grade English teacher. (I'm so bad with names that hers escapes me but I borrowed books from here quite often.) Aunt Pauline lived next door to our landlords so I visited her regularly too and I had friends a couple of blocks away. I talked Mom into giving up all but one of her dogs and promised that if there weren't so many I could help her keep on top of housework. She had a friend who could take them in so she'd be able to visit them.

I began 9th grade, the 73-74 school year. With my friend Carolyn I was studying Eastern religions and in particular we wanted to know more about what George Harrison was into. That led us to ISKCON and in the summer of 1974 I found an address on some incense and wrote to the organization to buy Krishna Book. We also read and re-read A Soul's Journey by Peter Richelieu, an account of a man taught to astral travel and visit levels normally only seen in one's afterlife. It was a very attractive picture of life after death. We were enchanted and wrote a lot of poetry together about these ideas.

The new apartment had cockroaches--I despaired of escaping the damned things--but they sprayed and managed to get rid of them. I was so relieved. I got permission to paint it. It had been yellow with white trim and gold carpet and that was nice but Aunt Gin had a red and black carpet she used to use in her bedroom that she didn't need anymore. I pictured white walls, red trim and that red carpet speckled with black. I thought it would be dramatic and hey, I was a teen. I painted it myself and did a good job. I used masking tape and cardboard to mark off areas I wanted to paint red.

In the Spring of 1973 fights with my mom had gotten physical and just as I had felt the previous year, I wanted a foster home. This time I called social services without talking to any family members first so they couldn't interfere. I'd been told previously that my mom might kill herself if I didn't stay and take care of her. I was taken to the County Home, a place for indigent elderly people with one wing for problem teens--mostly those who got into trouble though sometimes teens like me with difficult homes. Eventually we had a court hearing and I was so miserable at the institutional setting of the County Home I asked to be returned to my mom. My father didn't attend which was painful--he simply sent a statement that he would abide by the court's decision. No offer to take me in, no visit, nothing. Anyway I figured I had more freedom to see my friends if I put up with my mom's moods and tantrums.

As school started in September of 1974 I was getting more and more excited about ISKCON and I found out that George Harrison was coming to St. Louis on tour. I hatched a plan to go and to stay overnight in the Hare Krsna temple in St. Louis. I even asked my Dad for money for the concert ticket. (I think it was only ten bucks!) Here was the set list: https://www.setlist.fm/setlist/george-harrison-and-ravi-shankar/1974/st-louis-arena-st-louis-mo-23c48067.html

My fate was sealed when I set foot in the St. Louis temple for the first time. A wonderful scent wrapped itself around me, consisting of exotic spices and incense, a scent I tried to preserve in my suitcase for as long as possible after I returned home. The devotees were so cheerful and kind, and the women wore beautiful saris that seemed so elegant compared to my own clothes. The temple room was beautiful and the Gour-Nitai Deities on the altar were stunning. (In the various branches of Hinduism, God is said to enter into the form of Deities that are made according to scriptural instructions and then “installed” with the correct ceremony and prayers. This is said to be His kindness to allow us to serve Him.

I could barely tear myself away to go to the concert. One I arrived I was surprised that the devotees weren’t attending—I hadn’t yet learned about their practices of distributing literature—so I went in alone, a little overwhelmed by the crowd. I found my way to my seat, high above the stage and far enough away that George Harrison was almost ant-like. I didn’t care; I was in the same room with him, breathing the same air, wrapped in my teenage awe and fervor.
After the concert I made my way back to the temple and went to sleep in the women’s quarters, waking up early the next morning for the services and class. I was so sad that I had to leave; I had such a good time.

My life became increasingly about serving Krishna and I was even more impatient to go back to the temple, permanently. Carolyn and I found a book by journalist Faye Levine entitled, The Strange World of the Hare Krishnas, about her stay in the New York temple. While I wondered if I could handle the austerities of getting up early in the morning (3:30 a.m.) and the many other activities of temple life, I was fascinated by the total absorption I imagined in devotional service to God. Surely it wouldn’t take long to achieve pure devotion to God if I lived like that every day! Look at how “Krishna Conscious” I felt after one short visit to a temple!

I was having more conflict with my mother than ever. She was increasingly disturbed by my involvement in Krishna Consciousness and my new dietary restrictions. I had become a lacto-vegetarian and she was convinced that I was not getting enough protein even though I drank plenty of milk. In retrospect, it amuses me that she never worried about my extreme crash diets when I probably wasn’t getting enough protein. She took me to a doctor so he could tell me that my internal organs could be consumed by my body to meet my protein needs! We were fighting more and more and at times she became violent. I was more anxious to leave home than ever.

I dropped out of school, tired of the bullying I had tolerated for years and seeing no reason to subject myself to it. I was old enough finally (I’d turned 16 in December of ’74) to make the choice. I was hoping my mom would get tired of the fighting and let me go. Finally, in June of 1975 after a violent fight where she hit me with a desk phone, my mom told me that I could go for two months and if at the end of that time I wanted to stay, she would sign over custody to the temple president. This was my grandma’s idea and they were both thinking that I would get tired of it and get homesick.

Two months later Mom changed her mind and brought me back. I was 16 and I was willing to fight to get away from her this time. The temple helped me start court proceedings and I was given my own lawyer even while I remained in her physical custody. She moved to Missouri to avoid the court's jurisdiction but in Missouri I could leave when I turned 17 in December of 1975--which is exactly what I did.

To be continued. I am not proofreading as I write these so I'll probably do a sweep through for that after they are all finished.
 
 
 
Tapati
27 November 2018 @ 07:12 pm
The earliest years of my childhood were some of the best from my point of view. Things were happening that I was too young to know or understand so I lived in blissful ignorance, playing and exploring and feeling cherished by my extended family as the only child, only grandchild and only great-grandchild. Although I was spanked and hated it, I took it for granted that this was normal because everyone I knew was also spanked. Violence in the family was, therefore, normalized. We wonder why there's so much domestic violence.

My baby book lists some illnesses and I have an impression of my mom being anxious about her first and probably only baby. I had bronchitis and rashes and was hospitalized more than once. I am shocked that I was kept at the hospital over a rash though this was early in the vaccination era and infectious disease may have been in the doctor's mind. I was just under two and inconsolable when Mom left me there after every visit. I tried to escape more than once from the white-barred crib.

When I was four we moved into a trailer on my grandparents' farm in Montrose, Iowa. I loved living there and being close to Grandma and Grandpa. I loved animals. For awhile I even had a pony I named Cinderella but when my fear of heights made me afraid to ride her they sold her. I was really sad and I also suffered the loss of a sick lamb I had been trying to comfort for days before it died. I cried and cried and was told that baby Jesus needed a lamb. This was supposed to make me feel better but it only made me mad at baby Jesus and then guilty for being mad.

Grandma spent a lot of time with me and taught me how to tie my shoes and count to 100. I loved to watch her make pies and she would put the leftover scraps together into a little pie plate with some cinnamon and a dribble of water and bake it just for me.

I can't remember exactly when but at some point in the winter or spring of 1964 Mom started dating. One night this man, Homer Cook, came to Grandma's house and had a talk with me. He seemed very nice and he told me he wanted to marry my mom and take care of us. He would be a father to me, he said. I couldn't remember my real father--he had stopped visiting me around the age of 2 but I don't remember being sad about it. It wasn't like my hospital separation from my mother so I suspect he was not very close to me before his visits stopped. I didn't remember his parents either though I met them again as an adult and have enjoyed reading journal entries from Grandma McPherson. She was a sleepwalker like me and it was good to know where I got the tendency.

Soon my mom was married to Homer and we were moving our little 8x40 trailer to West Point Illinois.

My whole world was turned upside down. My extended family practically disappeared while we lived with Homer. We rarely visited them and our trailer was too small for them to visit us. I did make friends--one best friend named Debbie from across the highway that ran through the small town. I started kindergarten. I loved my teacher, Miss Hubbard. I was the only child for the first half of the year who could count to 100.

Homer? I remember yelling and drinking and fishing and he mainly referred to me as "your brat." When Mom was really mad he was sent to sleep in my room and I slept in her bed. He glowered at me during those periods and I felt like I was waging a war with him for my mom.

We didn't live that far from my family but as I said, we didn't visit. I don't know that Homer forbid it but I wouldn't be surprised.

Mom left him for half a year, living in Carthage, Warsaw and Keokuk. We were there when my Great-grandpa died on Christmas Day, 1965.

I thought we were doing fine alone but Homer sweet talked her into coming back. I was in the middle of first grade. That was the worst stretch; he raged at her and even choked my chihuahua, only stopping when we screamed. Their last fight ended with Mom going out to start the car and leave for good. It wouldn't start--he'd removed her spark plugs.

We took our dog and hitch-hiked to Keokuk. We moved our trailer to Shady Acres Trailer Court, outside of town. I was happy living there, running all through the woods and playing with the kids. I was active and happy and relieved to have left Homer behind. At some point, when I was 8 or 9, Mom traded in our little trailer on a larger one where I had the front bedroom.

When I was ten I met my father at a 4-H meeting I attended with my babysitter and her siblings. There were a lot of parents and children there and I was sitting on a bench in a hallway, waiting to go home. A man sat down beside me, too close it seemed to me. I remember leaning away and looking up at him, puzzled, trying to figure him out.

He said, "Do you know who I am?"

"No," I answered, wondering if I was supposed to.

"I am your father." (That scene in Star Wars really resonated...)

I didn't know what to say and in fact I'm not sure what I said, only that he talked at me and I tried to respond in some way, confused and anxious. He was there with his stepchildren. I knew about them because one of them--Crystal--used to stand behind me deliberately in the lunch line so she could torment me by saying she lived with my father and that he was going to take me away from my mom. I began to have stomach aches from the anxiety and finally told my mom. I bet she raised holy hell with him at that point because Crystal began to avoid me after that.

I saw him again at a cook out at his home, seeing him in place with his wife and stepchildren--the family he chose to spend time with. He tried to talk to me there and I responded but I know I was deeply ambivalent. I could have used some therapy and maybe family counseling sessions but that wasn't a common thing back then. Seeing him didn't bring about any kind of regular contact but I did get invited to Thanksgiving at his parents' home and got to spend time with my sister Bea--my first memories of her despite visits when I was very young. I remember wondering, though, why these people who seemed so welcoming had not called me or sent birthday cards all those years.

1968 was of course a pivotal year in politics and my family was very aware. We all loved Robert Kennedy (and I recalled them watching President Kennedy's funeral too) so were devastated when he was assassinated. I don't remember most of them reacting as strongly to the assassination of Martin Luther King but I was certainly aware. We watched the news every night so while I didn't have an adult's understanding I paid some attention and was upset when Nixon won the election. If Bobby had lived I have no doubt he would have won. And now we also know, in hindsight, that Nixon interfered in the peace talks that could have ended the war.

1968 was also the year that Aunt Gin met Uncle Clyde, a black man, and as they began to date I discovered my family's racism. Watching them argue over Christmas dinner attendance and "mixed marriage" shocked and dismayed me. After being exposed to segregation in the South my mom made it a point to teach me not to judge people by their skin color. Yet here she was, anxious to talk her sister out of dating and maybe marrying Uncle Clyde. The more I got to know him, the more I loved him. I was firmly on his team since we were all expected to take sides.
 
 
Tapati
26 November 2018 @ 12:48 pm
Turning 60 on December 2nd is important to me because I was told by my cardiac surgeon that I wouldn't make it to age 50 unless I reached a "normal weight." (Likewise making it to 50 was important.) I can't over emphasize the impact of having a cardiac surgeon say such a thing in the first conversation you have with him following open heart surgery. It cast a shadow over my relatively young marriage of 3+ years. Keep in mind that even on starvation diets as an active teen I could only reach 150 lbs (down from 183). I'm sure weight loss surgery comes to mind--but I was already firmly opposed to gastric bypass.

I'm not making light of the effect of extra weight on my heart or the rest of the body. Part of the reason I stopped dieting was that I was made aware of obesity research--reflecting my own experience--that dieting could drive weight up over time. With each diet I had the initial loss, a period of maintaining that loss, and then gradually the weight would come back plus extra pounds. I'm convinced that my weight would be much higher now if I'd continued dieting. I've written elsewhere about what I did to recover from dieting and normalize my eating.

That said, it IS possible to live longer than my surgeon indicated if you attend to OTHER risk factors as best you can. No one should make a fat person feel like that is impossible. It could so easily have become a self-fulfilling prophecy if I allowed myself to fixate on it and remain mired in depression and hopelessness. Doctors who think terrorizing their patients is motivational should think again. It is a tactic that can easily backfire. (And then the resulting early death is used as another data point against us.)

Now that I've explained why it's a special birthday, above and beyond the usual excitement about entering a new decade of one's life, let me explain how I plan to celebrate.

For the next week I will write about each decade of my life. I got this idea out of frustration that the vision I had for years about what I would do turned out to be too much for my current health and state of mind. I had to scale back my in-person plans but that made me realize that most of my social interactions take place online and have ever since I moved away in the mid-2000s. Why shouldn't the major portion of my celebrating take place online also?

So, migraine permitting, I hope to post each day about one decade of my life. If migraines interfere it will simply take a bit longer. I'm not going to make this a source of stress for myself.

Locally I am having a simple birthday dinner with family and a few friends. That reminds me that I need to get to a party store sometime soon. I'm delaying the gathering for a week after my birthday, though, because my birthday falls in what I've come to think of as a black-out period for social engagements. It's the time of month that I (still) have hormonal fluctuations during what would have been my period. I no longer have a uterus but I kept my ovaries so I have all the other symptoms. This means a sharp rise in all types of chronic pain, lower energy, more migraines and general discomfort. Not the best time for enjoying a gathering where I want to be alert and high-functioning.
 
 
Tapati
The same doc who spent a long time trying to talk me into gastric bypass surgery also brushed off my mention of abdominal pain as a likely symptom of my depression. (Note that I have had depression off and on for decades so I'm likely to know what the symptoms I typically suffer are.)

It turned out to be liver disease.

I wonder if it's worth it to give him any more feedback in the hopes he won't dismiss another woman's symptoms or not. Or if I have the energy.
 
 
Tapati
From her obituary:

“Her brief time diagnosed with inoperable cancer gave her mere days to live... A final message Ellen wanted to share was about the fat shaming she endured from the medical profession. Over the past few years of feeling unwell she sought out medical intervention and no one offered any support or suggestions beyond weight loss. Ellen's dying wish was that women of size make her death matter by advocating strongly for their health and not accepting that fat is the only relevant health issue.”

https://www.legacy.com/obituaries/timescolonist/obituary.aspx?n=ellen-maud-bennett&pid=189588876

And then her death is added to statistics that fat people die earlier etc. Let's see what the statistics would show if we ever get comparable health care to that of thinner people. I'm not saying fat doesn't adversely affect my health--just that unbiased health care would improve the situation and not add deadly insult to injury. (Though without fat bias I wouldn't have spent my teens and twenties on a series of diets that also had a negative effect on my health.)

It's difficult enough to deal with illness without second guessing my health care.
 
 
Tapati
27 July 2018 @ 09:44 am
I've modified my diet as much as possible to reduce inflammation, can't tolerate the level of Vit E suggested below but can tolerate 200 IU with food. I still have pain in the vicinity of my liver nearly every day, sometimes severe, and the area of my spleen sometimes has pain and is always tender. (When I went in to Urgent Care last summer with bladder infection symptoms the doc noticed tenderness in both areas. I should note that it had been years since I received a thorough abdominal exam like that. How many things could be caught earlier if doctors weren't afraid to touch fat patients or didn't convince themselves our fat is in the way so it's useless? We still feel pain and tenderness when examined and that tells you something!)

The referral to nutrition mentioned below is useless to me since Medicare (and therefore my secondary insurance) doesn't pay for individual consult. I may pay for one myself at some point, but basically I'm treating this as a stricter version of a heart healthy diet crossed with a modified diabetic diet with the hope of reducing inflammation generally. For my sanity I am not making weight loss a goal though some modest weight loss has resulted.

Gastroenterologist regarding trans-jugular liver biopsy results:

"As discussed on the phone, you have NASH (non-alcoholic steatohepatitis) which is inflammation of your liver from fat cells. There was a little bit of scarring (fibrosis, stage II) but good news is that there is not cirrhosis (complete scarring). Of course, we are trying to prevent cirrhosis so that would entail weight loss in a slow and steady manner. I have referred you to nutrition.
Also, vitamin E supplementation at 800 international units per day may decrease the inflammation and hopefully decrease fibrosis but that needs more studies to prove the latter."

Most recent liver panel:

Total Protein 6.8 g/dL 6.4 - 8.2 g/dL
Albumin 3.2 g/dL 3.2 - 4.7 g/dL
Total Bilirubin 0.4 mg/dL <1.1 mg/dL
Direct Bilirubin 0.1 mg/dL 0.0 - 0.30 mg/dL
Alkaline Phosphatase 131 U/L 26 - 137 U/L
AST 15 U/L 0 - 37 U/L
ALT 18 U/L 0 - 60 U/L

Last C-reactive protein test was 2015

C-Reactive Protein 40.2 mg/L

Recent cardiac cath showed no new blockages so that's great news! Even if nuclear scan showed a lowered ejection fraction.