An Exhausting List of My Special Interests

I've decided to make a list of all most of my life's what I used-to call-obsessions but the autistic community labels as "Special Interests".

I will surely forget things.

I know this, because I've seen myself forgetting things.  I've been reading some 2006 journal entries and find myself being reminded of interests I had forgotten.  Or sometimes there are interests that I downplayed in my head.  But now I read my journal and think...Wow, I was super obsessed.

I'm going to try to go in chronological order.

Edited to add 4/6/24- I've now decided that many of these things were NOT special interests.  More about that...way, way below.  

Peter Pan

The Wizard of Oz

Roald Dahl books 

Annie

Savannah Smiles

Poltergeist

All of a Kind Family Books 

Michael Jackson (remembered and added 12/31/21)

Child Stars (especially Heather O'Rourke)

V

Disney World  (off and on through out my life starting at around age 10 or 11)

Days of our Lives 

Karate Kid II 

Asian culture/people (maybe bordering on racist/fetish kind of thing)

Cabbage Patch Dolls (remembered and added 1/1/22)

Mario Bros  

Stephen King Books 

Anne Rice books 

Pat Conroy Books 

Dean Koontz Books 

Nightmare on Elm Street (Especially the third movie)

Agnes of God  (added 3/1/22)

Cystic Fibrosis. 

Cruise vacations

Our Ouija Board (and the pretend-friends that went with that) (remembered and added 12/31/21)

The Lost Boys  (Remembered and added 12/31/21)

Born on the 4th of July (added 2/24/22)

Novel Writing 

Born Free (I had an Elsa AOL screenname way before Frozen)

Making collages 

Abnormal Psychology, especially Dissociative Personality Disorder 

Beetlejuice (remembered and added 1/2/22

Judaism

England (especially British people)

Andrew Lloyd Webber Musicals

Comparative Religion

Hook

My Girl. (Weeping Willow with your tears falling down. Why do you always weep and frown?)

Scrooged

Saturday Night Live (Edited to add 1/25/22)

J.M. Barrie 

Screenwriting

Primates (especially the Great Apes)

Titanic

Another World 

Neurofibromatosis (much shorter and less intense than Cystic Fibrosis.  But significant, because I wrote a novel and screenplay.  And I've used the title (Thirty Cats) for various screennames, including Instagram, which I'm on a lot).  

Wedding Planning. (hated the dress aspect but obsessed with music, cake, flowers)

a folder that shows
a combination of my wedding
and Disney special interest

The X-Files

Seinfeld

Friends.   (Edited to cross-out.  I started having doubts about this one, because I don't remember doing anything outside of watching the show with Tim)

Twelve Monkeys 

Parenting (especially attachment parenting)

Homeschooling

New York (a part of being homesick for where we previously lived)

Making/editing montage videos 

Food  

Nutrition

Weight Loss (This is and previous two all part of my eating disorder)

The Sims 2 (Remembered and added 1/3/22-was also into Sims and Sims 3 at other points but 2 was my favorite)

Eating Disorders (after realizing I actually might have an eating disorder...and all the imposter syndrome that went with that).

Charmed 

Lucid Dreams

Spirituality (especially reincarnation) 

Australia 

The Colbert Show

McLeod's Daughters 

Lost 

Wicked (Added 2/24/22) 

Twilight series 

Harry Potter (Peak year for me was probably 2010-2011.  Prior to that it would come and go with the release of the books.  But 2011 I got involved with role playing activities).

Singing, 

The King's Speech (Remembered and added 12/31/21

The Sing Off (Remembered and added 1/2/22

Modern Family 

The Big Bang Theory (added 3/23/22)

Desperate Housewives

Ugly Betty (added 3/24/22)

Doctor Who

American Horror Story

Minecraft 

The Walking Dead

Narcissism, toxic behavior, psychological manipulation, etc.

The Me Too Movement

Trump and American Politics 

Coronation Street

Game of Thrones (added 2/21/22)

Dark The Netflix series (added 2/21/22)

TV shows in general

Myoclonus and Epilepsy 

Cats (I've often considered cats more of a family member than an actual interest or obsession.  But there was an exception between the time that Max died and Annie found us.  In that time, we went to Japan where I had a strong desire to visit Cat Cafes) 

Covid 19 (and at some points through out the decades a special interest in pandemics in general)

Anti-racism (added 1/3/22) 

Schitt's Creek

St. Louis (this was kind of a budding one...and it was kind of pushed aside by the next one on the list...but now I've gotten a tiny bit back into it.  Maybe)

Autism

Duolingo (remembered and edited to add 12/31/21)

The Characters I'm creating for a novel I will probably never write or I will write and it will be something to add to my list of unpublished and/or unsuccessful writing projects.  (two of the characters live in St. Louis, so it gives me a chance to kindle that special interest) 

Disney vs. Florida Republicans (added 4/22/2022) 

This list is difficult not just because of forgetting things but because it's hard to see somethings as a special interest when I compare them to other things.  

For example, as much as I was into My Girl for a period of time, it's NOTHING compared to how much I was into the Poltergeist movies. 

And yes, I was into X-Files.  But it's nothing compared to how much I was into Lost.  

Although then I question that.  Was I really less into X-Files?  Or is it because there was less ability to obsess via the Internet in those days?  Or has the passage of time led to my forgetting how much I (might have) been into X-Files.

Other special interests seem small, because they are common and many other people are more intense in their fandomship. 

It's easier to feel as if something is a SPECIAL interest when our interest in it is unique.  For example, I don't think being obsessed with Cystic Fibrosis is very common.  Well, it might be more common these days, because it seems the disease has become more often used as a subject in fiction and nonfiction media.  But back when I had it as a special interest....I was quite unique.

I'm thinking, though, that commonality shouldn't disqualify a special interest.  Otherwise, we'd have to cross out trains and dinosaurs from childhood special interests.

Less intensity also shouldn't disqualify, because there will always be people who are more intense than us.

I feel I was probably VERY high up there in terms of having Australia as a special interest.  But that doesn't disqualify other people with a less intense special interest in Australia.  AND...there is probably someone out there who is/was even more obsessed with Australia than me.

The question that lingers in my mind and will probably continue to linger for a long, long time is where do we draw the line between autistic special interests and not-autistic special interests.

A part of the divide would, of course, be having other traits of autism.

I think EVERYONE has had at least one special interest in their life.  Besides the other traits of autism...maybe it's about the amount of special interests and the intensity.  Each special interest doesn't have to be intense.  But maybe it would be expected that there's at least a few that are very intense.  

I think, for fun, I'll make a scoring list for what traits make an interest a SPECIAL interest....aka a potentially autistic special interest.

If you are terrified of being a person with autism, this list might reassure you or terrify you.

If you are wanting to identify as autistic, this list might either reassure you or give you an imposter-syndrome induced meltdown.  

The List

2 points for every time you are distracted from what you're "supposed" to be thinking about or listening to, because you're daydreaming about your interest. 

2 points for every single time you Google the interest or something related.  (yes other search engines count).   Subtract 1 point for each search...if you're searching due to worry or fear. Though I think sometimes fears can become special interests.

5 additional points for every website about your interest that you actually spend time reading 

5 points for each social media account, related to your interest, that you follow

10 points for every book that you read pertaining to the interest. This includes fiction written by an author you're interested in..not including the first book you read by the author.  

10 points for each item you have purchased related to your interest

25 points for every time you rewatch an episode, scene, or see the movie again.  (an additional 20 points if you actually buy theater tickets to see it again or you re-rented it from Blockbusters)

30 points if you watch a show or movie you'd usually have very little interest in solely because an actor or actress from one of your special interest shows/movies is in it.

30 points if you have developed a crush on someone because they are connected to your special interest

40 points  if someone suggested that you talk too much about a special interest

40 points if when you played make-believe with your friends, you insisted the storyline be related to your special interest.  Add 50 additional points if this sentence, for you, should be in present tense rather than past.

40 points if when reading, watching other books/TV shows/movies you were fervently wishing you were watching/reading your interest-thing.

40 points if you have written fiction related to your interest.  Add an additional 10 points if the piece of fiction is a full-length project.  Add an additional 20 points if you've written more than one piece of fiction.  Add 100 points if you've written more than three pieces of fiction related to the interest.  

40 points if you managed to learn something that would normally be too challenging for you. 

40 points if you really want people around you to shut up other things and let you talk about your  interest.  Add 100 additional points if you've had this feeling for more than two days. Add 500 additional points if this has gone on for more than a month.  Add 1000 points if this has gone on for more than three years.

40 points if thinking about your special interest brings you a sense of comfort when you're needing comforting or distraction.

50 points if you have gone to a convention because of your special interest.  Subtract 45 of those points if you went only because your friends went.  Subtract 49 of those points if you went mainly because your romantic partner or interest wanted to go.  

50 points if your interest led you to choosing your college major or minor.

50 points if you have a career related to your interest (Add 100 additional points if having that career didn't end your special interest)

50 points if your interest inspired you to do volunteer work. Add 20 more points for each additional event or project or night you slept away from home because of the volunteer work.

50 points if you've made charity donations related to your special interest.

50 points if your special interest led you to writing a pointed message that got you into trouble

50 points for each time you have not been there for a family member or friend when you should have been there...because of a special interest.  For example, you didn't attend your brother's wedding, because you wanted to be there for the midnight release of a Harry Potter book.  

50 points if your interest led you to doing something that would normally terrify you

50 points if you have an email address or social media screenname related to the interest

50 points if the passion for your interest led to you being arrested.  Add 10 additional points if you were convicted.  Subtract 50 points if you are Black.  Add an additional 50 points if you are convicted and in prison despite being white and upper middle class.  

60 points if there was a golden apple on your 5th grade teacher's desk and you had this very strong wish/fantasy that this apple was magic and would transfer you to the fictional universe of your interest.

60 points if you have a blog, Instagram account, YouTube channel, podcast, etc. that is dedicated to your interest and add 50 extra points for every year that you've had the account, etc.  If you don't have an account specific to the interest, add 5 points for every post or episode you've done about the interest.  

75 points if you kept your interest a secret for awhile either because it was intense, overwhelming, sacred, etc.

75 points if you tried to deter yourself from the interest because the intensity of your feelings scared you or you didn't want to go through THAT again.  

75 points if people skip over the usual small talk conversation topic and ask you about your special interest

75 points if you're not usually socially motivated but if people have a connection to your special interest, you are suddenly motivated to be social with them.

100 points if you have a book related to your special interest that you carry around like a comfort object...or any other item.  Subtract 50 of those points if the item is soft or cuddly (and you're under the age of 12) OR if the object brings you positive attention from others.  

150 points if someone asks if you've been tested for autism when you talk about your interest. Subtract 100 of those points if the person asking you is like me and is currently seeing autism in pretty much everybody.  

200 points if you have gone on trips to places specifically because of your special interest. Add another 50 points for each time you returned to the place.

200 points if you have been interviewed on TV or a podcast to talk about your interest...not about your interest in general but to showcase you as an obsessed person.  Add 50 additional points for each additional times you've been interviewed OR asked to be interviewed.  Add another additional 50 points if it was national TV or a popular program.

Okay...that was a lot of fun making the list.  But I have no idea how to do the silly or fancy math needed to come up with "correct" minimums.  

I'll try.

If anyone doesn't agree with my divisions, please argue with me (politely....or at least without death threats...or at least without gruesome death threats...or if gruesome, please be creative and make it more blood centered than rape centered)

So....How about?

5-50 points - a minor special interest

51-200 points - a major special interest

200-1000 points- a MAJOR MAJOR special interest

more than 1000 points?  Holy shit!!!!

As for autism....

If you have at least one special interest in the holy shit category, I'd read up on the other traits and seriously consider that you might be autistic.

Same goes for those who have at least 2 in the MAJOR MAJOR category.

Or at least 5 in the Major category

Or 30 in the minor category. 

If the label autistic scares you, because you're picturing Dustin Hoffman rambling about the safety of Qantas or the virtues of Kmart underwear, you could take up the alternative labels of Intense, On the Spectrum, Aspie, Living with Intensity, HSP (highly sensitive Person, Crystal Child, Indigo Child, ADHD, etc.

They all pretty much mean the same thing.  

Again, this list is not at all scientific.  But if it's fun for you or helps temporarily relieve you of any imposter syndrome....very cool.  

Edited to add 4/6/2024:  I've come to realize that a lot of what I listed above were NOT special interests. And now I've come up with new categories to describe other types of interests. 

So here we go....

Besides special interests, I've had

A) Stressful interests

B) Hobbies

C) Passing interests

Stressful interests are where I research something, because I seek validation, ammunition for arguments/debates, reassurance, etc.   

Hobbies are things I like to do but I'm not especially interested in them.  I would rather just do them than Google them, watch YouTube videos about it, etc.  

Examples of this for me lately would be playing The Simpsons Tapped Out, feeding wildlife, and taking care of the plants in my backyard. I might Google if I need to know something for practical reasons but not just for the sake of wanting to learn more and having that extreme passionate enjoyment.  

I love playing The Simpsons and have in rare instances Googled to find something out...such as: will planting Triffids end the game?   

If the game was a special interest, I'd probably want to watch videos of other people playing, watch the actual TV show, learn about every voice actor, etc.

Passing interests are when I love something, because I'm currently reading it or watching it...or visiting a place.  I'll get really into it for a short period and then I move on.

Often these feelings are recurring, because we revisit the place or a new season of the show comes out.

An example would be Dark. I loved that show.  And each time we watched a season, I obsessed over it a bit.  I listened to the music on Spotify. I Googled to figure out how the hell each character was connected, etc.  But a few days after watching a season, the interest would fade, and I'd have a new passing interest.  

Now....sometimes there will be some kind of lingering aspect.  For example, I still listen to music from Dark occasionally.  Mostly, because it's still on some of my playlists.  

I've been learning French the past eight years or so. Why?  Because we watched Les Revenants.  My interest in the show soon faded, but the French stayed with me as one of my hobbies.  

I thought it would be easy to go through the list and label most things as NOT special-interests.

It turns out it's not.

The problem is probably due to comparisons.

My special interests in Poltergeist, Cystic Fibrosis, and Australia played such a huge role in my life.  Other things seem small in comparison.  But when I think back carefully, I realize they too were special interests.

The three above were, I guess, my BIG Special interests. Or my Super-Special interests.

Judaism might fit in with the three above.  

Medium to small special interests: Annie, Savanah Smiles, Nightmare on Elm Street, V, Great Apes, Dissociative Identity Disorder.

Most of the TV shows and books would be passing interests even those I love a lot such as Doctor Who and Lost.  

Stressful interests: parenting, homeschooling, dreams and spirituality, eating disorders, myoclonus/seizures, narcissism/toxic behavior, autism, the MeToo-Movement, Trump, Covid, anti-racism, Israel

Hobbies: novel-writing, singing, screenwriting, collage-making, making videos, The Sims, Minecraft, Duolingo, dieting/eating, feeding wildlife, gardening, photography, AI art, etc.  

Note: Parenting in itself wasn't a stressful interest.  Though it's extremely stressful (along with extremely wonderful).  But what I'm referring to is the excessive reading of parenting books, websites, magazines, etc. in pursuit of reassuring ourselves that we're not destroying the soul of the tiny person living in our home.  The obsessing over breastfeeding, sleep, nutrition, discipline, education, etc.  

The Flowery Journal My Sister Gave Me (Part 25)

More journal stuff.

Okay, here I think I was getting a bit disturbed...and a bit silly.

Note: The blue is what was printed in the journal. The green is what I wrote.

I felt I had control of my life when I was able to go without eating for over forty hours.  

Yeah. And a few years later I would have an eating disorder that started mostly as a need for control. I think it was about 40% pressure to lose weight for my sister's wedding and 60% feeling that I didn't have enough control of my life.  

Counting calories, steps, pounds, etc. helped me feel like I had some control.  

Important decisions I made-to start eating again (2001)

That was in 2001. So when did I write the thing about not eating for 40 hours?

Before the eating disorder, I did have some periods of disordered eating. 

There were also times where I would get very hurt—very upset. Then I'd deal with it by not eating for awhile.  Emotional fasting, I guess.

Things I learned from disappointments-From the Darlene F. incident I learned not to trust job offers until they are in writing. Also don't accept a job unless you truly want it. (or are broke and starving).

What was my deal with reminiscing over the lost job? 

The story....

I was volunteering at a NYC private school to get experience. The teacher there got me in touch with a teacher at a prestigious public school. I had my interview. I didn't really click with the teacher, and I didn't feel really capable of being what she needed. But she gave me the job anyway.

I'm guessing I felt a mixture of relief and fear.  Yay! I have a job! Shit! I'm going to fail at it miserably! 

Then soon after I got the job, she called and said her old assistant was returning, and she didn't need me after all.

Now, at the time, I took it as a huge insult.

And she probably was NOT overly excited to have me there. Maybe she just felt obligated because of my connection to her teaching friend.  But perhaps she really was sort of okay with me and then her beloved assistant changed her mind about leaving.

On the other hand, maybe she thought I was so awful that she simply pretended the old assistant was returning. Maybe she was just trying to let me down easy.  

It wasn't that easy.

But I survived.

And I got a teaching job eventually.  

Click HERE for the index to my diary/journal posts.

Read my novel: The Dead are Online 

Abusive Parents, Toxic Parents, and Not-Perfect Parents

If you are brave stupid enough to confront toxic parents about how they have hurt you during your life, they will respond in various ways.

They might laugh it off.

They might tell you that what you remember, didn't happen. 

Or it didn't happen the way you remember. 

OR it might have happened but come on...it's not that big of a deal. Get over it, already.  You're too sensitive. You're paranoid. You're overdramatic. 

They might reluctantly admit that what you experienced might have actually happened. Though it's likely they'll claim not to remember.  It's more along the lines of, I don't remember it happening. But I'm not going to argue with you. If you remember it, MAYBE it happened.  

BUT they'll defend themselves by saying something like, I'm not perfect. Okay. And neither are you. That's what families are about.  We ALL make mistakes.

And we, their children, should just be thankful that they're not abusive. We should be grateful that we didn't have parents that raped us, beat us, or starved us.

SO....this is my personal list of the toxicity I've experienced through my life and how I'd compare it to outright abusive parenting and so called not-perfect parenting.

Note: it's all a matter of perspective. Some people would say the toxicity I experienced IS abuse (emotional) Other people would laugh at the toxicity I mention and say, this is just normal.  Probably because for them these things ARE normal. They probably do it to their kids. Their parents did it to them. And they see no harm.





Not-Perfect Parents don't notice their daughter has an eating disorder. Once they find out, they feel terrible, and give her the support she needs.

Toxic Parents don't notice their daughter has an eating disorder, and when she tells them this, they scoff at her. They tell her she was just doing some yo-yo dieting. They tell her people with eating disorders weigh like 40 pounds, have tubes in them, and are hospitalized.

Abusive Parents force their daughter to be on a diet, to the point that she's malnourished.





Not-Perfect Parents unintentionally expose their daughter to something that terrifies her. Once they see her looking terrified, they feel horrible and immediately remove the scare. They comfort their daughter. They help her avoid the scare until she is old enough and brave enough to face it.

Toxic Parents purposely expose the child to something that is terrifying and very age-inappropriate. They ignore the child's cries and refuse to remove the scare.  Months later, they continue the game by re-exposing the child to the scare, so they can see her reaction and have a good laugh. Later when the child is older and tries to talk about this, they play a new game: Gaslighting.

Abusive Parents tie their child to a chair and force her to see scary things.





Not Perfect Parents don't know that their daughter has a health issue. Because in not-perfect families, communication is not 100%,  and sometimes there are secrets—temporary or permanent. Once their daughter tells her parents about her health issue, they show a lot of interest and a lot of concern.

Toxic Parents show very little interest or concern when their daughter finally tells them about her health issue. After a lot of pressure, they finally show interest. But it's in the form of, we don't really think there is anything seriously wrong with you, but we will use our power to help you anyway. So don't forget how caring, generous, and helpful we are.

Abusive Parents cause their daughter to be ill by poisoning her...via Munchausen by Proxy





Not Perfect Parents don't notice that their daughter is in emotional turmoil. When she tells them, they give her a lot of extra TLC.  They help her in various ways but most importantly they listen.

Toxic Parents-don't notice when their daughter is in emotional turmoil. When she outright tells them, they give no response. They completely ignore it. They go about their business. When she gets angry about this, they remind her once again how much they have given her throughout life and how much they have sacrificed.  They are not concerned for her sadness. They are concerned for the lack of appreciation that she gives them. (Even though she has said thank you many times)

Abusive Parents-Lock their daughter in the attic. They starve her, scream at her, and kill bunny rabbits in front of her.





Not Perfect Parents-Forget their daughter's birthday. Or they remember and give her a present she already has. Oops.

Toxic Parents-Cancel birthday dinner plans with their daughter because of illness, and instead leave a large check in the mailbox so she can go out to dinner without them. Even though she has let them know many times in the past that she doesn't want financial birthday gifts from them.She wants more love and attention. Toxic parents have never heard of a thing called a rain check.

Abusive Parents-Sell their daughter for sex so they can MAKE money from her.





Not Perfect Parents-Are busy and not always there for their daughter. But when she does very much need them, they do what they can to put her as a priority. They feel and act like doing things for her, and with her, is a deep pleasure.

Toxic Parents-Are busy and not always there for their daughter. But when they are there, oh is she going to hear about it. They let her know that doing things for her or spending time with her is a sacrifice. Any assistance whether wanted, unwanted, or unsolicited is presented as martyrdom.

Abusive Parents-Drive their daughter out to the forest of grizzly bears and leaves her there. They never even return to look for her body.





Not Perfect Parents-Compare themselves to the fathers on This is Us and feel they come up a little short. They strive to be more supportive, more gentle, more fun, and more passionate.

Toxic Parents-Compare themselves to parents who have abandoned their children, raped their children, starved their children, or caused gross bodily harm to their children. Then they think and say, I'm a great parent. It's terrible that you don't appreciate how wonderful I am.

Abusive Parents-Well, they're the ones who rape their children, starve their children, and cause great bodily harm to their children.





Not Perfect Parents-Miss their daughter's graduation because they have an event they feel they can't cancel. They feel very guilty about this and spend the rest of their lives trying to compensate for it.

Toxic Parents-Miss their daughter's graduation because they have an event they feel they can't cancel. Then they lay a guilt trip on the daughter, because her graduation caused the rest of the family to miss their event.

Abusive Parents-Lock their daughter in a closet on graduation day.





Not Perfect Parents-Are sometimes tormented by their daughters fighting among themselves. They struggle to decide whether it's best to intervene or stay out of it.

Toxic Parents-Complain that a sibling drama is causing them to lose money. Ugh, they say. Even though they are very wealthy and the financial loss would actually be quite minimal (in the scheme of things).

Abusive Parents-Force one sibling to poke out the eyeballs of the other sibling. They film it and upload it to YouTube.





Not Perfect Parents-Sometimes secretly intervene in the background. For example they might know that one daughter is depressed. So they suggest to another daughter that it might be a good idea for her to email her depressed sister.  Or if one daughter is being irrationally angry, they might privately write an email to the family asking people to be patient with this daughter, because she's going through a difficult time.

Toxic Parents-Sometimes intervene in the background. But they make very sure it doesn't stay secret. They let their family know that they orchestrate the kindness and good deeds that are done within the family.

Abusive Parents-Force one sibling to tear off the fingernails of another sibling.





Not Perfect Parents-Wonder if a man or woman is good enough for their daughter. They're a bit overprotective at times.  And on other occasions, to their shame, they sometimes worry that their daughter might be pushing above her weight.

Toxic Parents-Write an email to the daughter's husband describing the awfulness of their daughter.   Proclaiming that they are the victims of relentless abuse from the daughter. But let's be fair. The daughter HAS done horrible things....like repeatedly bringing up a father-caused trauma during her childhood; complaining that the father brags too much, complaining that the father wasn't there for her during difficult times, daring to remind the father that he is not actually the heroic victim he imagine imagines himself to be.  And worst of all, this horrible, horrible daughter refuses to believe in her father's gaslighting attempts. The shame! The poor father! 

Abusive Parents-Murder their daughter's husband and hide his body in the wall of their trophy room.





Not Perfect Parents-Sometimes say things to their grandchildren that their children feel is unkind or inappropriate. They listen to their child; then either express understanding that they made a mistake or argue their point.

Toxic Parents-Scoff at the parent for interfering; then turn directly to their grandchild to say, Your mother has no sense of humor.  

Abusive Parents-Feed their grandchildren apples with razor blades inside.



Not Perfect Parents-Are terrified by the thought of their children dying and try not to think of it. If the subject comes up, they might try to change the subject. But if attempts at the conversation are persistent, they assure the child they will be horribly sad yet willing to help in the aftermath.

Toxic Parents-Blurt out that they heard something about grandparents having to raise their grandchildren because the parents have died. The toxic parent complains that this would interfere with their golf hobby. When the daughter expresses a problem with this attitude, the toxic parent acts annoyed. They dismiss the daughter's concern, assuring her that they'll most likely die first. Because the toxic parents live in a la la land where only the elderly die.

Abusive Parents-Take their children and grandchildren on a boat ride in shark infested waters. Then the parent throws their grandchildren and children off the boat. They sail back to shore, singing a happy song. Then they goes to the country club and plays some golf.





Not Perfect Parents-Have some moments of insanity during a traumatic time. They say cruel things to their children; then feel awful about it. They forever feel ashamed for what they said. They feel sad, conflicted, and undeserving whenever someone compliments them as parents.

Toxic Parents-Have many moments of insanity during a traumatic time. In a public place, they say cruel things to their teenage daughter, including that they hate her. Years later they happily, proudly, and hungrily accept a community father-of-the-year award.

Abusive Parents-Write a text to their daughter everyday saying "I hate you. I wish you were never born".





Not Perfect Parents-End up having a child with cancer. Because they have the wrong genes. Or they drank the wrong water. Or they have bad luck. These parents are devastated. But they deal with it.

Toxic Parents-Pretend their child has cancer, because this blatant lie gives them an excuse to bother a very famous celebrity at a restaurant. They use emotional blackmail to get an autograph.

Abusive Parents-Purposely give their child SYMPTOMS of cancer by feeding them poison so they can get attention from doctors, nurses, celebrities, etc.





Not Perfect Parents-Sometimes have huge fights with their children. They end the fights and fix the relationship by either apologizing if they're the ones mostly in the wrong or GRACIOUSLY accepting their child's apology if their child is the one mostly in the wrong.

Toxic Parents-Sometimes have huge fights with their children. But it is never, never, never their fault. How could anything ever be their fault?  They use a family drama...such as a biopsy to try to illicit feelings of fear, sympathy, and guilt. This, to them, is the way to win someone over.  This is their way of trying to end a fight.

Abusive Parents-Sometimes have huge fights with their children. They end things by chopping off their kids head and sticking it into a fish tank. Now their kids can't talk back to them anymore. Problem. Solved.





Not Perfect Parents-Feel sad when their children remind them of their imperfections. Sometimes they might even get a little defensive. But then they take the time to think about their mistakes, face their mistakes, and grow from their mistakes.

Toxic Parents-Become furious and disgusted when their children remind them of their imperfections. They say things like I feel sorry for you and/or all you see is the negative.

Abusive Parents-Do not hear about their perfections from their children because they have stapled the mouths of their children shut


Not Perfect Parents-Are usually exited about their child's future and sometimes imagine big things for their child. Yes, sometimes they have doubts and worries. They might say things like, It's important to have a back up plan. Or they might push their child a bit in directions their child is not so interested in.  But then they realize their mistake and back away.

Toxic Parents-Let their children know that they really don't have much hope in the child's success. They actually say to their kids that they should enjoy this lifestyle they are currently living in, because they won't have it in the future. The too-obvious underlying messages: You will never be as successful as us. Your biggest success in life will be having us as parents.

Abusive Parents: Have a very specific career in mind for their children. That is, being a drug mule. And if their child refuses, they beat them with a stick.



Not Perfect Parents-Struggle to find the balance between neglect and intrusiveness. Usually, they do a very good job of it.  But every so often, they help when they shouldn't or they don't help enough. It's an ongoing battle.

Toxic Parents-Undermine their daughter's self-esteem, during a fight, by telling her she's never accomplished anything on her own.  It's all about what THEY has done for her. All the hard work she did during her childhood, high school, college, etc? Apparently, it was all in her mind. Yeah, there are apologies after this particular drama. But periodically, throughout life, it's shown that this was probably not the case of people saying things they don't mean when they're in a fight. Occasionally they give attention to her work but they give more attention to their own accomplishments and more attention to what they have given to her, what they have done for her, or what they are willing to do for her. 

Abusive Parents-Don't do anything for their child. Their child does everything for them. The child is their slave.

Read my novel: The Dead are Online 

Exaggerated Concern

Once upon a time you weren't feeling well.

He was pleased by the results because it made you thin again.

He praised you for looking good.

Then he was told that you're having health issues.

He offered to help.

Because

He has power.

He can get things done.

He wrote a letter

Using his power.

He warned you about the letter.

He told you not to be alarmed by his exaggerated concern.

You weren't anymore alarmed than you had already been.

You were sad.

You were hurt.

You were angry.

You wished he had real concern.

Real concern instead of exaggerated concern.

Real concern versus thinness admiration.

And the letter lies.

There are invented symptoms

Because your symptoms weren't enough for him.

He thought the lies would help.

But they embarrassed you.

You told the doctor the truth about the lies.

You wonder now if he partly blamed you.

Did he know that you hated those lies?

You hope he did.

The health problem faded away on its own

After an invasive medical test.

You do your research

You learn the test was probably unnecessary.

You feel conned.

You feel violated.

You feel wronged.

Years pass.

New Symptoms appear.

It takes you 3 months to tell him.

Because the last time brought you only grief.

You bring it up in a light tone

Because you don't want to be thought of as

A drama queen

A hypochondriac

But you don't want him to be light.

You want him to be concerned.

Real concern

Not exaggerated concern

He shows no concern.

Not real.

Not exaggerated.

He doesn't mention it.

Not the next day when he sees you.

Not the next week.

Not the next month.

Not until a fight leads to a temporary estrangement.

Then he shows concern.

Not to you.

But to others.

The others tell you about this concern.

He cares! He cares! He's so worried! He's so worried!

You learn he wants to use his power again to help you.

You feel a lot of pressure.

But...

You're not eager for the help.

Because

It didn't turn out so helpful last time.

You're afraid that once again the concern is exaggerated.

You don't like how he brags about helping people.

And you remember

That time

When he told you everything you've gotten in life comes from him and his power.

His words let you know that he believes

It was never your hard work.

It was never your natural talent.

It was never your passion or desire.

It was all him.

He apologized for that.

But no sorry could erase what he said.

You hate to accept his help again.

You hate to give him the idea

That you can't help yourself.

You give a thanks but no thanks.

At least for now.

Maybe in the future if your way doesn't work out.

And your way works out quite horribly.

You accept his help.

He uses his power.

He writes another letter.

You start to have doubts.

His way will be expensive.

He would pay.

You know that.

But he has already given you too much money.

You have been reminded of this when you were sad and and angry.

The reminder made you more sad and angry.

You start to back away.

You decide to try again on your own.

You know your way might fail again.

But you know his way isn't a guaranteed success.

So better to take the path where less strings are attached.

He stops pressuring you to accept his help.

He expresses support for your path.

Then later you share a video

And he comments on the video.

His comments reveal

that it's very likely once again his concern has been exaggerated concern.

And despite all you eventually told him about your condition.

He didn't listen.

Or he didn't understand.

He trivialized what's big to you.

And you get angry.

You try to hide the anger.

You don't want drama.

You don't want to explain.

You know he won't understand.

You know he'll just end up reminding you

Of how much he has done for you.

How much he has given you.

How much he has sacrificed for you.

It's best to stay quiet.

But then he wants to go to lunch.

You don't want to go.

You're too angry.

And what's the point of having a conversation with him?

What's the point of answering his questions

If you know he's not listening or understanding?

Should you lie and make up an excuse?

Probably.

But you don't.

You hate lying.

You tell him the truth.

You tell him why you're angry.

This leads to a fight.

And of course you are right.

He reminds you that he has done so much for you.

Because he cares so much.

He's very concerned for you.

Is that real concern or is it exaggerated concern?

The concern isn't for your health, though.

It's for your estrangement from your family.

Funny.

You talk to them often.

There was an estrangement in the past.

It ended 9 months ago.

But still he's concerned.

Real concern?

Maybe.

But no.

It's probably exaggerated.

Instead of going to lunch on a lovely afternoon

Or lying.

You fight.

He reminds you that he is the one.

He is the one who is willing to find you help.

He is the one who is willing to pay for that help.

If you

You and not him.

If you

Think it's more than that minor problem in the video.

The video that addresses a condition you have been already diagnosed with.

A condition that you have not been concerned about.

A condition that you did not get an EEG for.

A condition that you did not get an MRI for.

He should know all this.

He should understand all this.

But he doesn't.

And he doesn't try.

He's too busy

Telling you all he's done for you

And all he's willing to do for you.

He lists things.

He brings up the letter you hadn't even wanted him to write.

The one he kept gently pressuring you to accept.

He tells you he dropped what he was doing to write that letter.

It hurts you

It angers you

That he sees helping you as a sacrifice.

It bemuses you that he would say this

After you had repeatedly rejected his help.

And with his fighting words

He confirms

That you had every reason to reject that help.

You had every reason to turn away from his concern

That was very likely exaggerated.

How to Be Awful to Someone Who Has or Had an Eating Disorder

Is there someone in your life who currently has an eating disorder? Or maybe you know someone who is trying to recover from an eating disorder or is trying to avoid having a relapse of a past eating disorder?

Would you, for some reason, like to encourage them to keep on with the eating disorder or return to an eating disorder?  Maybe you highly value thinness? Maybe you simply like to mess with people's head...especially vulnerable people?

Well, have I got the guide for you!

Here's my invaluable advice on how to fuck around with someone who has an eating disorder present or an eating disorder past.

1. Compliment them a lot as they begin to lose the weight. Increase your compliments as they get thinner and thinner. Tell them often how good they're looking.

2. In case your own compliments aren't enough, make sure to also tell them that your friends are also very impressed with their new look.

3. Compliment them on their willpower. Tell them that you wish you had their willpower.

4. Try to avoid, or at least limit, compliments that are not related to their weight and/or appearance.  Doing so can be extremely detrimental to your goals. You don't want the person to lose focus! You wouldn't want them to imagine they have value outside their thinness.

5. If the person tells you they have an eating disorder and are going try to stop having an eating disorder, don't offer them any compassion or encouragement. They need to go through this ALONE!  This way there is a chance they might return to the eating disorder and remain adorably skinny. Or if that can't be obtained by your methods, they will at least feel very lonely, lost, and neglected. That might be entertaining to watch.

6. Tell the person, who tells you they have/had an eating disorder, that they're wrong. Tell them they didn't have an eating disorder. This will really mess with their head...maybe even to the point that they get depressed. It might even inspire them to keep on with the eating disorder or return to one they've abandoned!  How cool would that be!?

Wait, but don't stop there.  Make sure to provide the person with your own standards of what equals an eating disorder.  This way, if you're able to succeed in helping the person return to the eating disorder, you've given them a new goal to aspire to. For example, you might say, A person with an eating disorder weighs 40 pounds and is in the hospital with tubes sticking out of them! 

If your friend, coworker, or family member only managed to get down to 97 pounds they will probably feel like quite the failure.

7. If years later, the person loses a lot of weight again, either because of a relapse or other illness, make sure to look very impressed. Tell them they look great and make sure to acknowledge the weight loss.

8. Repeatedly push the person to return to behaviors that they have repeatedly told you they're trying to avoid. For example, if they're trying to avoid fitness trackers, repeatedly ask them if they have one.  If they try to tell you they're trying to avoid it because of their past eating disorder, ignore them! Or if you can't ignore them, try to forget that they've shared this information with you. Or at least pretend to forget.

9. Make sure you let them know that you equate dieting and weight loss with goodness. If you see they haven't taken a dessert from the buffet yet, say in an impressed and pleased tone, Are you trying to be good?  

10. If you are serving dessert to a crowd, make sure to buy a low-calorie alternative for the person who has left their eating disorder.  It doesn't matter if they've poured their heart out to you about their eating disorder and how they're going to stop trying to restrict themselves. Ignore all that!

11. If you look at old photos with the person who had an eating disorder in the past, make sure to give compliments on the photos that display them at their thinnest. Say things like, You looked like a model! You're so beautiful there! 

12. Make sure to comment on other people's weight in front of them. One very effective phrase is, She let herself go. Remember when making any of these comments: Thin=awesome  Not thin=failure.  You MUST get these straight in your head so you can communicate effectively.

13. If the person shows a bit of vulnerability, mentions their past eating disorder, and explains why they avoid certain behaviors, do NOT say anything supportive, encouraging, or sensitive. This would be a huge mistake!! Instead, make sure they know that you personally don't avoid these behaviors. Why? Because you are more awesome than them. Make sure they know that you have the willpower they once had. Yeah, you might not succeed in getting them to return to their eating disorder. But you will probably get them to feel like a failure. At the very least, you will have them knowing that YOU think they're weak and a failure.

14. When you go to the store, buy them some weight loss tea! This will really mess with their head. When they start looking agitated, play innocent. What? Really? I had no idea that was weight loss tea. Wait. They believe you? A fight's not going to happen? That's no fun! So later, if you see they've put the tea in the corner, away from the teas they regularly drink, move it front and center. They'll either drink it and maybe start getting thin again...or they'll entertain you with their anger. If you're lucky, both might happen.

15. Avoid reading about eating disorders! Do not educate yourself! I repeat. Do NOT educate yourself. Doing so can be detrimental to your goals. The reading material might mess with your head and cause you to say or do things that will make the person feel loved, understood, and supported.  You do NOT want that to happen.


I'm sure you've heard that phrase, ignorance is bliss. Right? But guess what else? Ignorance is POWER!!!!! 


Please note: This advice will work well towards anyone in your life—sister, brother, cousin, friend, neighbor, classmate, colleague, employee, etc.  But your chances of success will greatly increase if the person is traditionally supposed to rely on you for emotional support....such as mother, father, grandparent, best friend, spouse, boyfriend, or girlfriend.

Good luck to you!

Edited to add (2023).  Guess what!  I have more brilliant tips for you!

16. If someone else n your family or social circle loses a lot of weight, make sure to compliment them in a group text involving the person who had the past eating disorder.  Do NOT text them privately.  No! Make sure the person who had an eating disorder sees you praising this other thin person. Tell the new weight-lose achiever that they look amazing.

But wait.  That's not all.  In case the eating-disorder-recovered person gets confused and thinks you're complimenting the other person's outfit or hair, say something precise like You look so tiny and cute!  

Make sure it's understood by everyone in the chat that weight loss and being tiny is valued in the group.   

Note: Bonus points if the chat also includes young adults, teens, and tweens.  Maybe your words will help inspire them!!

Read my novel: The Dead are Online 

My EEG Experience (part 2)

So...here are more thoughts about my EEG worries (that I mentioned in a previous post)


Wishing For Symptoms

An EEG works best if you actually have the symptoms that concern you. I have symptoms every day, but on some days, I have hardly any symptoms and on other days, I have a lot.

With the myoclonus, I got the idea that the level of the symptoms were connected to my menstrual cycle.  It seemed like I was at a low level the week of my period and the week after; then things would be more intense in the two weeks after that.

BUT...then I changed birth control. Instead of having two weeks high and two weeks low, it seemed to be close to off.  I had tiny bits of myoclonus just a few times a day. It was close to nothing.

This was a bit confusing and frustrating, because it was at that time that I had my neurologist appointment.

Should you go to the doctor if your symptoms have disappeared or greatly reduced?

I decided to keep the appointment, since a) I was still having SOME symptoms b) I didn't know if the level of symptoms might change again. I figured maybe this birth control hadn't reduced my symptoms. Maybe it had just changed the schedule.

Sure enough. Soon after the doctor appointment, the myoclonus became more frequent. And now it seemed instead of two weeks on, two weeks off, I was on a schedule of one month off and one month on.

Though I wasn't quite sure about it, since I hadn't been on the pills long enough to know the actual pattern of it all.

But I worried that during the EEG, I wouldn't have enough symptoms, and the whole thing would end up being a waste of time and money.

I decided to do what I could to increase the symptoms.

I did a lot of Googling and learned how female hormones effect epilepsy. Apparently, estrogen increases the change of seizures and progestin decreases. Therefore I wanted to increase my estrogen.

I did more Googling in hopes I could find foods and drinks that might help me.

It was confusing, and I realized that some of the websites I was consulting seemed to be a bit of the pseudoscience sort. No...NOT the ones about epilepsy and hormones. I think those are legit. But the ones about food.....

Well, some of it seemed to be legit.

The conclusion I eventually came to was that soy might help me increase estrogen, and green tea might reduce it.

So for the weeks leading up to the test, I ate a lot of edamame and soy ice-cream and I avoided green tea.

Oh, and I also ate licorice, because...well, I guess I read something that convinced me this would work. 

Now when I say I ate a lot of soy, it's not like I overdosed. I probably ate what's normal for person in Asia and/or who's vegetarian.

I guess what I'd say is I didn't eat servings that were larger than usual. I just made sure to eat soy every day.  During other times, soy is more of a maybe thing. I eat it when I'm in the mood or we order from an Asian restaurant.

Anyway....

I'm not sure if my symptoms are truly related to my hormones. Nor do I know if the special diet worked.

But symptom-wise, things worked out quite well for me.

This could be because I DO have epilepsy, hormones play a part, and the foods I ate helped manipulate that. Or it could be a coincidence. Or it could have been some kind of placebo effect.

Either way....

I had a fair bit of myoclonus during the test. I don't think it's the most I've had, but it was enough to prevent me from thinking, Why the hell did I get this test when all I have is a few twitches now and then.

The crazily good thing is that on Wednesday I had major symptoms.

I have other symptoms besides the myoclonus. One of them is the worst symptom I have, but I fortunately don't have it too often.  This is where I get this weird/bad feeling which sometimes leads to a 1-2 minute episode where I spit up huge amounts of saliva. I've had this for years and have had no idea what the hell it is. I don't think I ever suspected epilepsy. But when I started looking into epilepsy because of the myoclonus. I started wondering if these episodes could be a type of seizure. Then recently I found an article about a man with symptoms that are somewhat similar to what I experience. And it turned out he has epilepsy.

I hadn't had an episode since April, so having one for the test seemed kind of lucky. Usually I hate having the episodes, but with this particular episode, I felt I had hit the jackpot.

AND another one of my brainy symptoms is hallucinations. I have had audio ones, usually when just waking up from sleep. But I hadn't had one in several months. On Wednesday night I had one. So that was cool.

The good thing about having symptoms is I can get a more accurate diagnosis.

I can find out if the symptoms are epileptic seizures...or if they're something else. Mental issues? Our house is haunted? I'm possessed? I'm an alien disguised as a human?  Those kinds of things.

If I didn't have all these symptoms, I'd be less satisfied with the results of the test. If it comes out negative, I might think, Well...so that myoclonus isn't epilepsy, but how about the spitting episode?

Financial Issues 

We're American, so we don't just have to worry about having health problems. We have to worry about having a financial disaster each time we have a health problem.

The (maybe) good news is that, with our current insurance, we chose to pay a high monthly fee and get a low deductible. With my MRI and some tests that Tim had done, we've already met our deductible.

I'm not sure if this means all our future tests this year are free; or if we have to pay a copayment percentage.  If I lived in a country with reasonable healthcare prices, the latter wouldn't be so worrisome. But in the US, you don't know what kind of price tag you're going to see. The doctor's office could decide they want to charge $30,000 for the EEG. And even if the insurance pays 80%, we'd still be stuck with a $6000 bill.

I'm thinking we should have asked the price of the EEG. We did make sure that the doctor's office checked to see if it would be covered by insurance. But we didn't ask the actual price.

Well, I just read something that made me feel a bit reassured.  This website says, without insurance, a 24 EEG would cost about $3000. So that might be $9000 for three days. If our copayment is 20% that would give us a price tag of $1800.

And that kind of sucks, because we could buy some good plane tickets with that money. BUT...it's better than some situations.

Now that I think of it, I think WE did ask Victor Remmers, the tech guy, how much it would cost. This, though, was when he was already at our house with the equipment. I wanted to know the difference between the EEG without video and with.

Unfortunately I don't remember his answer. I think I was too busy being annoyed that they seemed to be pushing the video on me. 

Cats

I had a slight worry that Yeti and Annie would be scared of the wired version of me.

Fortunately, the cats ended up being totally fine.

They didn't treat me any differently.

I still got an ample supply of feline-affection.

The other worry was that the cats would chew on the colorful wires. They didn't.

Yeti went after the backpack straps a couple of times. That's about it.

REMOVAL

The wires were attached to my scalp with glue.

I assumed Remmers would put the stuff on AND take it off.

The day Remmers came to put it on, I learned I would be taking it off.

He said we should use coconut oil or acetone.

I had this bad feeling that the removal would be easier said than done.

It ended up not being so terrible.

The best thing is Tim was absolutely wonderful. I expected to have to go at it alone, but he insisted on helping. He actually did more work than me...at least in the initial stages.

Well...and he he Googled to get insight and instructions about the situation. And I hadn't. (which is so uncharacteristic of me!)

I'm thinking...

You know that whole love language thing?

Maybe Google is my love language.

I think if someone Googles to learn more about me or something I'm enduring, it's a sign of love.

Or at least it shows they care or are interested.

So anyway....

Tim Googled. He helped put the coconut oil in my hair, and he helped pull off the tape and wires.

Getting the wires off my head went smoothly.

Getting the actual glue out of my scalp was a little more difficult.

A little came off in the shower. A lot came off when I brushed my hair. Quite a bit stayed in my hair.

Another issue: I put too much coconut oil in my hair and didn't do a good job removing it.  I didn't quite realize this until hours later when I saw my hair still looked wet. I realized my hair wasn't wet with water. It was still soaked with coconut oil.  This is probably also about the time that I realized I still had quite a bit of glue in my hair. It looked like dandruff, and we had gone out to dinner with me like this.  I wonder if the waitress noticed!  Hopefully she wasn't the most observant person, and hopefully it was at the level where you'd have to look close at my scalp to see.

Now I'm four showers past the ordeal. My hair is soft rather than greasy I don't see any more glue, and my scalp is less sensitive (it had been a bit sore this past weekend).

Negative Isn't Always Completely Positive 

When you have a medical test, it seems the proper thing to do is hope and pray that it comes out negative.

Yet there is a big part of me that would prefer the test to come out positive.

Judging from what I've read on message boards, I'm not alone.

I think if you're having symptoms, there's relief in knowing that there's physical evidence proving that these symptoms are real.

When I go to the doctor...if she says, your tests came out completely normal, I think I'm going to be embarrassed.

I'll be embarrassed that I told my family about my issues.

I'll be embarrassed that I got angry at some members of my family for not acting like they cared that much.

I'll be embarrassed that I blogged about it.

I'll be embarrassed that I went to the doctor's office for it.

I'll be embarrassed that I paid for all these tests.

Faking vs. Emotional Distress

When I first learned that my symptoms might be psychological, I was quite upset.

Slowly as I read more and more, I started to accept the whole idea.

I think one problem a lot of us have is that we blame ourselves for things that are not our fault.

Even if the issue is biological/medical, I think there can be some shame.  I remember in high school being petrified when I had to be tested for diabetes.  I'm sure some of the fear was about potential treatments and lifestyle changes. But I'm guessing a lot of the fear was also about shame. Stigma.

Even with basic things we feel embarrassment or shame. We're embarrassed if we have to shit in a public toilet. We're embarrassed when we fart. We're embarrassed about our periods.

So no. I don't think it will be that surprising if I end up being embarrassed or ashamed about having a psychogenic disorder.  And I don't think I should feel ashamed for feeling ashamed.

But I AM working on being less ashamed.

One thing I have told myself is that I can NOT control my self-conscious mind. And if this is a psychological disorder, the subconscious mind is what's causing the symptoms.

 It would be kind of like dreaming.  Just as I can't tell myself NOT to dream about a certain person, I also can't tell my toes, shoulders, legs, arms, face, etc. to not move.

This whole dream comparison. Well, when I thought it up, I thought this is how I'd explain things to my family. And then MAYBE they'd understand.

But I'm trying to come to terms with the likelihood that no matter how many analogies I provide and no matter how many articles I send, my family is going to feel that I've been faking it for attention. They're going to think I'm being overdramatic and silly.

For those who are reading this and think I should be more positive...I'll just say that it's already happened to some degree.

I told one family member that there's a chance it could be psychological. The response was something like, I don't get it! Why would you fake it? 

I tried to explain that I wasn't faking it, but I don't think I got through to the family member.

Also....

There's the fact that when I told my mom I was worried about having an eating disorder relapse if I went on a diet, she scoffed at the whole thing and told me I never had an eating disorder.  She said people with eating disorders are in the hospital and weigh 40 pounds. She said I had just been yo-yo dieting.

It hurts to not be believed. It hurts to not be taken seriously.

I have had a lifetime of psychological invalidation. When trying to communicate my fears, needs, thoughts, emotions, etc...I've so often been giving the message that I'm too dramatic, too silly, too picky, too negative, too sensitive, etc.

So with all that, I can't be expected to expect my family to be understanding.

And also with all that, I can't say I'd be surprised to get a psychological diagnosis.

My brain waves might be okay.  But all this invalidation and other shit has really fucked up my head.

Even if I get diagnosed with epilepsy, I am pretty sure that some of my symptoms ARE psychogenic.

Medication Fears

If my EEG comes out positive, I'll have the wonderful validation that comes from having a real medical disorder that can be detected with tests.

But if that happens, I'll probably have to go on medication.

Medication costs money. So that's one shitty thing. Though I think insurance will help a bit with that. Hopefully.

What bothers me most about medicine is the side effects.

Sometimes I read about side effects and I think, what the hell? I don't get it. The side effects sound worse, or just as bad, as the original symptoms!

Early on in this myoclonus drama, I thought to myself that I would fight against being medicated. The exception would be if taking medicine could prevent the problems from getting worse.  If all I have is some mild twitching and jerking, I think I'd prefer that over drowsiness, fatigue, vomiting, weight gain, liver problems, rashes, headache, etc.

BUT I have other issues besides the myoclonus and if those issues are seizures, that's another story.

I have this thing where I wake up in the middle of the night and have this awful feeling of weirdness. I can't describe it well. This happens to me almost every night. If this is a seizure and medicine will put a stop to it, will it be worth enduring the possible side effects? Or should I just keep my own problems and not trade them in for new ones?

Then there's winter. I've been starting to put the puzzle together. Whatever I have, it seems to get worse then I'm cold.  It seems I feel awful all winter from later afternoon onwards.  If that comes from messed up brain circuitry, I should probably say yes to the medication. I should probably skip the fight against it.

 It's when I think about all this that I start to think the psychogenic diagnosis might not be so bad after all.  I can skip the medicine and just hope that my subconscious stops trying to mess with me. Maybe I'll get some therapy to help with the process.

The Scary Stuff

When the myoclonus began, I considered some scary, fatal possibilities—brain cancer, Creutzfeldt-Jacob disease, Multiple System Atrophy, etc.

As months went by and I didn't spiral into a dreadful, scary level of disability, it seemed likely I didn't have the worst things out there.

After I had the MRI and didn't hear anything back from the doctor, it seemed reasonable to also rule out moderately dreadful stuff like MS and benign slow-growing brain tumors.

Then a few weeks ago, I was looking for information on myoclonus and EEG reports and I ended up reading a bit about the progressive myoclonic epilepsies. I had seen them mentioned before, but for some reason, I kind of skipped over it.  I think I thought it was something that happened to children, and since I was an adult this seemed unlikely to be the diagnosis.

But I learned recently that it can happen to adults.

The thing that stops me from totally freaking out is that these diseases are rare.

But that's not 100% reassuring. Because rare is not impossible.

What scares me the most about it is the genetic aspects. And that's all I'm going to say there because it's something I don't like to think about...or write about.

Diagnostic Mistakes

This would all be easier if I had 100% faith in doctors and medical technicians.

But I don't.

I'm a bit paranoid...partly because I'm a distrustful person and mostly because I've read horror stories.

My mind is swimming with what-ifs.

What if I have a tumor and it was too hard to see on the MRI because the imagining center didn't use contrast?

What if I have something serious on my MRI, and the results were misplaced?

What if the technician is playing a video game while looking at my EEG results and misses something?

What if something is seen on the MRI or EEG, but it's small, and the doctor decides it doesn't need to be mentioned.  I'll think I have a psychogenic problem until years later I end up getting another MRI and learn I had a problem growing all this time.

What if, because of medical misogyny, my tests are given little attention because it's assumed I'm just a typical woman with hysteria.

What if I don't have epilepsy, but something is over-interpreted, and I end up having to take medications I don't need?

I think I worry less about a false positive, because I've educated myself enough to fight back against that.

For example, I would know not to accept a diagnosis of epilepsy based on symptoms alone.  I feel lucky to be aware that some seizures-like episodes are actually psychological.  If the doctor ended up saying something like, Well, you're EEG came out negative but with these symptoms you're having, I'm still guessing it's epilepsy.  Let's try this medication here; I think I'd have the knowledge and courage to speak up and argue.

I can't say I'd have the courage to say things like, Are you sure you read my EEG carefully enough? Are you sure those were my MRI results?  Could you have gotten the wrong ones?  Are you sure there's not anything strange on my MRI that you're keeping secret from me? 

Well, anyway...that's about it for now.

I shall hopefully have more information in the next few weeks. I might not fully trust the information, but at least I'll have it.

Read my novel: The Dead are Online 

My Life in 1995 (part 7)

More excerpts from my 1995 diary.

I'm onto the part of my life where I had just finished college.

Today I had a job interview with the zoo. I might work in the petting zoo. 

Last night I talked to Tim. He left this really long message on the answering machine. 

Melissa and Dawn thought he sounded nice. (5/9/95)

And when they met Tim, Melissa and Dawn grew to love him. They are two of the many women that Tim has charmed with his magical Tim powers.

At dinner we all laughed a lot because Melissa kept singing this weird phase, "Oh a biscuit". Melissa has been practicing her monologue all day.  (5/9/95)

I think this was the time that Melissa was the star of her school play.

I wonder if "Oh a biscuit" was something they used in drama class.

Well, I just Googled "Oh a Biscuit" to see if it was some kind of acting activity. I didn't find anything.

Maybe she just made it up. She IS very creative.

I went to the grocery store with my mom. We also ate lunch. I am in need of a Mother's Day Present. (5/11/95).

I like reading about times I did stuff with my mom.

I talked to Tim for more than 2 hours, and now I think my parents will kill me. I hope I get a job soon. (5/11/95)

Those were the days where long distance relationships were highly monetized.

I can't wait to see Tim. Melissa and I laid out all day and we got very sunburned. (5/13/95)

I wonder why I laid out like that. I'm not often a lay-in-the-sun kind of person. Was I trying to get tan for Tim?

I was kind of expecting my diary to tell the story of how I ended up deciding to visit Tim in New York. But I'm not seeing it. Fortunately, I have some memories.

Our family friends were having a wedding near NYC, and this gave me an excuse to go visit that guy from camp I now had a crush on. Otherwise, it would seem a bit full on. You know....

But then for some reason, my parents canceled the wedding plans. That was very disappointing. I no longer had a reasonable excuse to visit Tim. Somehow I convinced them to let me go anyway. And somehow I made plans to visit Tim without seeming like a total stalker.  I'm not sure how I managed that.

I think my dad is drunk. Well, at least he is acting weird. He is always seeming to put on an act. (5/13/95)

Yeah. I still see this in my dad a lot. It's like he's on stage even though he's not on stage.

I haven't gotten in a fight with anyone in my family yet, but that is not saying much because I've been only home for a week. (5/15/95)

The grammar there is messed up. It sounds like I hadn't left the house in a week. If that was the case, I think there probably WOULD be fighting.

It is 2:42 in the morning, and I'm listening to music. I put new pictures on my bulletin board. Ran across many old faces. It is memory lane now. (5/18/95)

While traveling down memory lane, I'm reading about past journeys down memory lane.

We saw Dichard. It is a great movie. My mom didn't like it. She called it unrealistic. These days whenever my parents don't like a movie they call it unrealistic. (5/19/95)

I have no idea what movie I was talking about there. I'm guessing I misspelled it. I Googled similar words and couldn't find anything.

Maybe if I look in May 1995 film releases?

No...didn't find anything.

I looked in April as well.

It could have been something we rented?

I just realized I am going to NY on the anniversary of Dawn's accident. May 26. I think this is the 5 year anniversary.  (5/21/95)

I think Dawn would have been mad if she knew I had forgotten. Knowing myself...if I was her, I'd be offended as well.

Well...at least I remembered eventually.

I really like Tim a lot. I talked to him on the phone for 2 hours last night. He is just so nice and funny. I feel a strong connection to him. 

The funniest thing is I said I'd never date anyone again. 

I guess even I break promises to my own self. (5/21/95)

Was this my way of complaining that people break promises they've made to me, and I was joining them in that game?  Or did I mean, lots of people break promises to themselves, and now I'm one of them as well.

Grandma is doing better, but people think she won't make it through the summer. (5/24/95)

She DID make it through the summer, but she died a year or two after that. I often forget if she died in 1996 or 1997.

I'll go check.

Okay.

She died on May 5, 1997.  So it was close to two years later.

Work was fun. I think my new friend is Elliot the cat. He stayed in the room with me a lot. He is a nice animal. After work I went to the zoo and visited the apes. The orangutan was leaning against the glass. It was special because I've never been that close to an orangutan. He was very cute. 

I was kind of jealous because he was giving this little girl all the attention. I wanted him to give me attention. Oh well. You can't have everything. (5/24/95)

I had gotten the job at the zoo.

Reading the above makes me kind of wish I had given up (at least temporarily) on writing and film and pursued a career in animals instead.

Maybe I could have been a zookeeper.

On the other hand, I'm quite satisfied having Annie and our new cat, Yeti.

There have been many times where we've said no more pets. We're going to give ourselves more freedom to travel. But...I think I'm realizing I need animals in my life. And not just animals I observe from the window or in the backyard. Those experiences are lovely. But I think I also need animals that are my best friends.

I am in love with Tim and he's in love with me. I think he will be the man I end up marrying and he thinks so too. (5/29/95)

Well...I guess a lot happened on that one weekend.

Did we really talk about marriage so soon?

I think he is the best thing that ever happened to me. I just hope things work out because things seem to good to be true. I love him so much. 

It is pretty funny. This weekend has really changed my life and now I am so happy. (5/29/95)

I think back then I relied way too much on life events for happiness and sadness.

I'm sure if Tim hadn't returned my romantic feelings, I would have come home depressed and suicidal.

I think the best mental health advice comes from the poem by Rudyard Kipling: If you can meet with triumph and disaster and treat those two imposters just the same.

And, of course, I'm not criticizing a young woman for being happy about finding love. Who wouldn't be happy in that case?

I just know, from reading my diaries, and seeing my track record...it was too easy for me to ride those ups and downs.

In New York, we hung out and went shopping and did fun things. It was one of the best and happiest times of my life. I hope it stays happy. I really do. (5/29/95)

It stayed PARTLY happy. But since I live in real life and not a fairy tale, there's also been sadness, anger, disappointment, etc

I really am in love with Tim. He wrote me 3 very sweet letters tonight. He is so special to me. I hope I spend my life with him because he is so nice.  Tim told me about really awful things in his childhood and he is so strong. It makes me realize that no matter how bad your life was, you can't use it as an excuse to be a bad person. Tim is very inspirational to me. He is great and wonderful. (6/2/95)

I wonder if I told him about the negative things that happened to me in my childhood. And if I did, how did he respond? And what was he thinking and feeling?  Was it along the lines of, well, that's nothing compared to what I've been through?  Or was he as touched by, and interested in, my life story as much as I had been by his?

The thing is, the inspiration I once felt gradually morphed into resentment. A feeling developed of Tim being the star of our story, and I have often felt like a supporting character. Often it seems like my problems, aspirations, and backstory matter less than his.

Some of those feelings come from my own self-esteem issues. But I won't give myself all the credit. I believe a lot of it comes from things Tim has said, done, not said, and not done.

There is no way to please my mother and my father will always take credit for what I do and who I am. That is their nature. I can't change them. I can only work on myself. My mother is displeased with everything and she keeps sticking up for Matthew. That is because he is like Dad. 

I need to realize this is my life and to do things on my own, because I can't do things to please my parents. They can never be pleased. (6/8/95)

That IS so not true! They were very pleased when I developed an eating disorder and lost tons of weight.

Okay, and they've also been pleased at other times.

They're very pleased that I brought Tim into the family.

They're pleased I gave them a grandchild.

They were very pleased when I made family videos, and that was wonderful. I felt I was contributing something important to the family. But then, a few years later, they turned around and gave the filmmaker role to Tim.

I'm trying to think of other times that I've been able to please or impress them.

Singing! My mom is very nice about my singing. I like that. Also my mom has given me nice compliments on how I interact with the children in the family. That was very sweet of her.

My dad once gave me really nice compliments on a screenplay I had written. Or was it a novel?  Maybe both?

This summer, my dad acted pleased that I had unloaded the dishwasher. I think he was working on being more appreciative of other people doing chores. It was nice of him to be thankful.  But it was kind of a mess on that occasion, because it ended up that there was confusion over whether those dishes had been clean or dirty.

Lately I feel a yuckiness in my heart and I feel weird. (6/6/95)

I wonder if it's related to the weird feelings I get today.

Usually, they ARE yucky feelings. Yesterday, though, I had one that wasn't bad,  I felt this pressure in my head, but it felt kind of cool instead of awful.  Maybe it felt like being on drugs?

Last night Tim called and said he might come to Chicago. I love him so much.  He is the best guy I have ever met. (6/8/95)

We were visiting family and having a graduation party for my cousins and me.

I am so happy because Tim is definitely coming to Chicago. That is the nicest thing a guy has ever done for me. (6/11/95)

Yes. It was very nice!

I really love Tim, but sometimes I worry he is too great and he is not a gift from God, but a cruel trick where something too perfect is snatched away from me. But I know I must stop thinking that way. (6/22/95)

I can't blame myself for that skepticism. It's hard to have faith in love when you've had negative prior experiences. And what person hasn't? It's a miracle that any of us have faith in love.

Sometimes I feel so detached from my life. It is like I am watching one of those movies where I don't feel like I am part of it. It is strange. 

I am waiting for Tim to call.

We have been dating for a month now.

I love him.

Sometimes I am scared because I am growing up and there are so many changes. 

In the movie yesterday they said people are afraid of change but they shouldn't be because they should find comfort in knowing that the one thing that will always be guaranteed is that there will be change. Nothing stays the same. (7/1/95)

It's like that song from Avenue Q—"For Now".

There HAVE been lots of changes.

I no longer see Tim through rose-colored glasses.

I no longer work at the zoo.

I AM back to living in the same house, though!  Sometimes change involves going back to where you started.




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Read my novel: The Dead are Online