I knew this day would come

I’m fighting the system, and I’m not sure who’s winning.

Recent Victories:

Receiving state disability. Not enough to pay rent, but maybe enough to save up and make a move towards permanence

Receiving my PTSD diagnosis from a clinician who works for the same organization that caused the trauma

Finally getting my appointment with a neurologist (later this month)

Receiving support from my MD in regards to the trauma I’ve gone through as a direct result of misdiagnosis of my epilepsy, and mental illness stigma over my seizures

Recent Setbacks:

Retraumatization with the inept and sadistic health workers in the Emergency Room, and with the mental health assessment I consented to for the PTSD evaluation

Continued seizures and horrible headaches after starting medication

Having to force my partner out of my life, after finally speaking with an advocate at Domestic Violence Services

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How Parents Control Adult Children with Money

Coraline (2009)

Have you ever thought,
“My parents wouldn’t care if I were dead.
They would be happy because I cost so much!”?

It is NOT your fault that you think this!
It is based on a Narcissistic Personality Trait called Grooming.

Grooming is the predatory act of maneuvering another individual into a position that makes them more isolated, dependent, likely to trust, and more vulnerable to abusive behavior.

This is a pattern of behavior that falls under the
“we don’t talk about that” category in our family. My parents have groomed me to be dependent. I am their last child and they want to resent me for taking any of their time/money, but they also need to be needed, to justify their existence. 

Don’t reach for that cheese!

My dad started hounding me about saving money and my money choices when I was about 14. I got my first job at 15, and haven’t stopped working until a month ago. Growing up, if I needed clothes, I had to beg for Mom to drive me to the next town so we could go to JC Penny. Every time it turned into a bi***fest over her trying to control what I buy, and her rule to “only get one thing.” Well, only getting one thing, twice a year doesn’t amount to much to wear at school. I was always forced to piece together some random “family friend’s” hand-me-downs. I was bullied in school for years until I started bullying back. The kids thought it was hilarious I never had any sports bras.

Maybe one day I'll get a sock with colors!

Maybe one day I’ll get a sock with colors!

Anyway. I worked constantly, paid my way through college, I got my Bachelor’s degree. I went hungry, often. I went far away each Summer for work.

They helped me with gas and groceries for the first couple years. They used this tiny connection to emotionally abuse me while I was in college. Dad would nag me about sending him the exact date, time, and amount I had spent, what store, and a “general description of what I’d bought,” for “taxes.”

They gave me the first loan last year when life’s obstacles started literally beating my brains out…I was in too much pain last year to continue my work past mid-September, and my Winter job ($8.50 an hour, son) didn’t start paying me till AFTER CHRISTMAS. So for Sept- Dec I was hungry again. And had NO money for rent. I asked them for help…

                I gotcha where I want ya, and now I’m gonna EAT ya!

They barely gave me enough to get by, held it over my head, hated me for it, etc. But that’s exactly what they wanted, and that’s exactly what I’ve been doing – getting by. I hardly made any money this Winter – I missed 2 weeks of work when I was out with severe concussion, displaced vertebrae, and and general unconsciousness. Then the season ended early due to horrid snow conditions.

Last month is the first month I’ve ever surrendered to “quitting.”I had a perfectly good job (except the insanely evil Nboss/don’t get me started on her/I had it under control), but I had to quit because,
GUESS WHAT? I HAVE EPILEPSY. And the seizures didn’t start when I hit my head in December.
They started when I WAS BORN (according to the MRI I got last week).

What happens to people who suddenly find out they’re disabled?

I had to quit my job (my boss would never fire me – she already fired everyone else and I’m all she had left!) The
DMV officially suspended my license due to “uncontrolled lapses in consciousness.” I lucked into
couchsurfing at a buddy’s place for this month only, and afterward I’ll be homeless, like usual. Unless I can round up maybe $2,000 for a first/last/depostit on an apt in town. After that I can get work again.

So I called to tell mom’ndad about ….my life.

Here’s Dad’s responses:

“That sounds really tough, kiddo.”

“Well, we really hope you feel better soon.”

We’ll believe it after you see a specialist.”

“You never ask ME about my prostate!”

“I just don’t have any ideas for you.”

“So you don’t want to drive because you’re scared?”

When I told him I don’t have rent, and want to borrow $2,000, for first/last/deposit, he started complaining about how he “already loaned me $10,000, which he knew he would never see again“. When I told him that wasn’t true, he switched to insisting that if he helped me find a place to live,
I would probably just flake out and move somewhere else (How??? IT IS ILLEGAL FOR ME TO DRIVE).
We argued for a while, and I told him I didn’t want to talk to him again unless there was someone else there, to hear the things he said. So he wrote me this email instead!:

I’m writing an email rather than calling because our calls tend to devolve from conversation to conflict, then we can’t have a rational discussion.

First of all, I was mistaken when I said we loaned you $3,000 last fall [I guess that’s his apology for screaming, “we already loaned you money!”].
The amount was actually $2,000 which you asked for in early September to help pay rent until you started getting paid by the ski area [which didn’t happen until January].
I was recalling an additional $700 that we paid for your rent in February while you were still in college. I don’t think we discussed the $700 as a loan, but it was a gift to help you finish school
[then why bring it up?].


We’re extremely proud of you for completing your degree and appreciate all the hard work that went into it [we will now put a dollar sign on how much we “love” you]: 

So as far as loans go, there is the $5,000 loan from the Alumni Association for college expenses [tuition] which we co-signed and are currently paying off in monthly installments for you and the $2,000 for rent last Fall for a total of $7,000.

Woah! The college loan comes back from the dead to help Dad save face!
The loan is interest-free until I’m able to pay it back, AND you can work with the Alumni Association to pay it back whenever you can; however, he intercepted their communications with me so I never got their letters. He sold his boat when he moved away from our family home (and left me) on the coast BECAUSE HE WOULDN’T HAVE ANY USE FOR IT IN INLAND.
He started paying off the loan without asking me first. Then randomly brought it up on the phone one day, and I said, “Oh, I wish you hadn’t done that.”
He answered, “well, I really believe in that association and think they deserve the money,” and besides “I’m getting payments for the boat anyway.”

He hasn’t mentioned that “loan” in years. But obviously NOW – when I’m suddenly disabled, in pain, homeless, and starving is a good time to decide that I OWE HIM $7,000???? 

Our “conflicts” usually involve me asking for a little bit to get by with, and him demanding several thousand dollars in return. Then I usually bring up that he seemed very pleased to pay over $30,000 to have me committed to a mental institution in 2012 for two months for “being too sad”
(They used my epilepsy symptoms to make me look crazy, and looking crazy for having epilepsy makes you sad).

My dad made over $100,000 yearly before he retired at 55. He’s got two new cars in his 5 car garage, and a NEW motorboat, and a camper-trailer, and a giant 3 bedroom lodge-style home on canyon-front property which he had custom constructed for him – complete with a plasma screen in each room.

I don’t speak to my parents any more.I would rather be homeless.
At least when I sleep outside, nobody judges me. 🙂

Anyway, he wrapped up his (UNWELCOME) email with this loving little quip:

You’ve been critical of the financial support we’ve provided in the past,
so please know that

we’re not trying to force anything on you or make you feel guilty about anything.

We’re making this offer because you’ve asked for it, and because we’re concerned about your health and safety, and we want to help you continue to make progress toward emotional stability and independence. If you’d like to discuss any variation on what we’ve proposed, please send me an email.

Trauma – Thoughts of Revenge #1

I survived the mental health system.

I have been verbally/physically abused by nurses, therapists, ER personnel, psych techs, and obviously psychiatrists. A lot of people have been, but they keep quiet about it. The repercussions of trying to tell a mental health professional that abuse occurs within the psychiatric system are monstrous. I have endured a decade of systematic torture. As a result, I’ve developed the symptoms of PTSD, for which I could never afford therapy. Instead, I process things by writing about them.

Revenge? Or Rebellion?

Feelings of revenge are a natural response to trauma. In a study of 96 individuals with PTSD, the severity and repetition of traumatic thoughts surrounding the traumatic event predicted the severity and repetition of thoughts of revenge. Intrusive thoughts were a better predictor than perception of the perpetrator’s being punished for their actions. (Kunst, 2011).

In other words, it might not matter if the abuser is brought to justice; I’ll still be thinking about getting revenge. Should that keep me from fighting this fight? I think many civil rights movements have begun with trauma, and thoughts of bringing the perpetrators of abuse to justice.

Thoughts of revenge have triggers. I take refuge in learning more about my actual conditions: Juvenile Myoclonic Epilepsy and PTSD as opposed to the diagnoses that have been thrown at me over the years to make me go away: Bipolar Disorder, mania with psychosis, ADD, Generalized Anxiety Disorder, Tourette Syndrome, Dystonic reaction to medications, Borderline Personality Disorder, and of course attention-seeking. Learning the truth, while self-healing and constructive, is triggering. I feel rageful, indignant, hopeless, and empty (uncared for).

Maybe it’s unrealistic to expect compensation for what I’ve been though. But people spill coffee in their own laps and get to sue McDonald’s for it.

Letter sent to a medical malpractice attorney:

I think I have a case for malpractice/medical error with Poudre Valley Health’s ER dept.

I have a history of “mental illness” which has been recently identified as being neurological in origin; i.e. I have Myoclonic Epilepsy. I presented frequently at the ER feeling “confused, shaky, and anxious,” and was even taken to the ER by ambulance for “acute dystonia,” and presented often with suspected Autism. Epilepsy was not suspected and I was treated for “psychiatric” conditions.

When released, I had a seizure while driving and got into a very serious car accident, of which I have no memory. I was given another psychiatric evaluation at the ER and taken to a behavioral unit. Although my car was totaled and I face litigation for the property/bodily injury incurred from this accident, PVH ER records indicate the MVA as “minor with minimal damage to vehicles and no injuries.” I was also convicted of reckless driving.

Is this a case for medical error due to mis-diagnosis?

Could be.

Juvenile Myoclonic Epilepsy

Diagnosis
Delays in diagnosis are common, often until a generalized tonic-clonic seizure brings the child to medical attention. Ignoring the myoclonic jerks is commonplace. Suspect JME in any adolescent driver involved in a motor vehicle accident when the driver has no memory of the event, but did not sustain a head injury.

Clinical Pediatric Neurology: A Signs and Symptoms Approach (2009) by Gerald M. Fenichel

Imagine if we had a voice; What would we say?

Coping strategies for living alone with epilepsy

A post-ictal emotional debriefing with myself.

Since I live alone, I have to find ways to navigate the electric time-space warp they call a “seizure” by myself. It’s similar to guiding yourself through a short acid trip (I would imagine… 😛 )

The seizure itself may have been a secondarily generealized tonic-clonic, Although my level of ictal consciousness indicates it may have been a complex focal with clonic movements instead. It lasted maybe 5 minutes with another 10-15 minutes of laying on the ground saying, “come on, legs! let’s go, legs!” This is the phenomenon known as “Todd’s paralysis,” or post-ictal weakness. If you can, when someone has a seizure, let them be for a good 15-20 minutes because they’re not just tired – they’re actually paralyzed.

I managed to crawl up the stairs and get my camera going about 20 mins later. In this video I talk a little bit about my coping strategies for living alone with epilepsy. Besides counting from 0-60 and back, I start grounding exercises as soon as I feel the electricity dying down. “The dog is white. The cars are parked. The sea is gray. There are two birds.” Etc. It helps me remember where I am and why I’m laying on the ground feeling like a rag doll.

I sure was rolling around in the ol’ yard. I just noticed that piece of grass on my head, haha!

I’m probably not just crazy – Frontal Lobe Epilepsy

When I was two years old, I was chasing my mom around and smashed forehead-first into the thresh-hold of the door. It’s a story that bears a permanent scar, but I otherwise tend to forget about it. Then it occured to me today to look up the symptoms of epilepsy caused by damage to the frontal lobe. This is what I found out.

Frontal Lobe Epilepsy (FLE)

Seizure types resulting from FLE are very characteristic simple partial and complex seizures with secondary generalization. During simple partial seizures, consciousness is preserved; the person is alert, can respond to questions or commands, and can remember what occurred during the seizure. During complex partial seizures, consciousness is altered or lost; the ability to pay attention or respond to questions or commands is thus impaired or lost. Often, there is no memory of what happened during all or part of the complex partial seizure. Generalized (tonic-clonic) seizures affect both sides of the body, involve loss of consciousness, and convulsions. Frontal Lobe Epilepsy seizures may be simple partial or complex partial, or they may spread into other body parts (Jacksonian) or amplify into generalized (secondarily generalized) seizures. Or a combination of all of those seizure types.

FLE is characterized by seizures that begin in one part of the brain and spread laterally to other parts, causing an array of symptoms. They can range anywhere from asymmetric and abnormal body positioning to repetitive vocal outbursts and repetitive jerking movements. Emotional aura’s (particularly fear) is associated with FLE, and in patients with FLE fear is shown strongly on the face, as opposed to TLE seizures in which the fear is internal and not shown. Dystonia is usually the first symptom of FLE, which is defined as sustained muscle contractions that cause twisting and repetitive movements or abnormal postures; these movements tend to go unnoticed at first because they are quite brief and don’t affect consciousness at all.

Other symptoms partial seizures due to FLE, depending on the part of the brain affected by neurological discharge:

Supplementary Motor Area (SMA)

-facial grimacing
-vocalization
-inability to speak (selective mutism)

-complex automatisms such as kicking, pelvic thrusting, finger rubbing, lip smacking, chewing or swallowing. Others may include speech, which may or may not be coherent or sensible.
-Responsiveness is often preserved, but the patient will regain consciousness, often feeling disoriented and with no memory of the incident

Primary Motor Cortex (PMC)

-“Jacksonian” seizure, which looks like twitching in one part of the body which sortof “catches on” to the other parts and spreads.
-Clonic movements (alternate involuntary muscular contraction and relaxation in rapid succession)

Anterior (frontal) regions: 
-motor and vocal agitation similar to that of the SMA and accompanied by emotional feelings, often leading to misdiagnosis of a psychological disorder

Dorsolateral cortex:

-clonic movements
-head turn in direction of damaged area of brain (ipsilateral)
-ipsilateral eye deviation (looking)

Operculum:
-swallowing, salivation, chewing
-Clonic facial movements
-Inability to speak

-person is fearful and has epigastric aura (pain in the solar plexus)

Other facts:

The majority of frontal lobe seizures occur between 2 am and noon. I think it’s also interesting that electronic Vagal Nerve Stimulators (VNS) are supposed to be effective in treating this disorder. VNS is a technique I discovered as a teenager, when I started having little “breathing-attacks,” misdiagnosed as anxiety. I would press on my vagal nerve in the small depression in my collar bone and the attacks would decrease.

Maybe I’ve got some brain damage. Maybe the fancy MRI-gadget with it’s pants-crapping gadolinium contrast will show me that brain damage. Monday’s the day.

VC

 

Myoclonus – This one’s for Mama n’ Pa

Myoclonus isn’t fun, and it isn’t a panic disorder.

Does this look fun to you?

It doesn’t go away on it’s own. The muscle contractions are extremely painful and the stigma and embarrassment almost took my life.

I’ve never met someone else personally who suffers from my condition, but there are a few extremely brave souls on the social media who are speaking out. Connecting with these people, if only through their videos keeps me going right now, keeps me sane. Thank you to the brave women (they’ve all been women…) who’ve posted their stories.

Here are just a couple of those videos:

Living with Myoclonic Dystonia
Link redirects to a brave makeup artist talking about how her condition effects her daily life


 


Young woman with Juvenile Myoclonic Epilepsy who, like me, wasn’t believed for several years.
She was lucky enough to be diagnosed as a teenager.


A Cry for Help — Open Letter to my Folks

Hi Mom n’ Dad,

It’s been a long, slow weekend.  The total count for seizures Fri-Sun now is about 5 or 6. No matter how hard I try I can’t really remember much of yesterday. I’ve been sleeping a lot, which I suppose is good for me. On Friday I collapsed 3 times, and once this evening. I honestly don’t remember much of yesterday.

The collapsing is becoming a real issue, and a huge anxiety factor. Before I broke up with my partner, I could usually count on her to catch me. She knew my behavior enough to know when I was going to fall. I don’t typically have them during the day – they’re more common before 8 in the morning and around 8 – 10 at night. But, like the day I was discriminated against in Vicki Fowler’s office, stress can cause them to come on suddenly. Usually when I fall, I start losing muscle control quickly but am able to simply lay on the floor – or the stairs, or whatever. But when I’m outside, or on cement, I tend to fall much harder than I intended to. I remember hitting the cement pretty hard outside Fowler’s office, then crumpling forward but my partner was already there waiting. My head would have smashed into the cement if it weren’t for her.

I know I’m not safe alone any longer. I probably need someone to take care of me, but I can’t imagine who would want to do that. My good friend has offered several times to get an apartment together in town, but there’s hardly any listings and nobody’s taking me seriously because I have absolutely no source of income.

I’m obviously worried about falling and hurting myself. I can always trust my dog to guard me while I’m passed out, but she was forcefully separated from me in the fake Dr.’s office and I can’t afford the cost of getting her registered even as a therapy dog so she can’t go on the city bus. I don’t feel safe going anywhere without her.

I’ve wracked my brain for other options. Dad offered to get me back to the homestead somehow, but I don’t understand how that would help my situation. He said you would try to find an apartment for me to live in alone, but I don’t see how that helps with my falling-while-I’m-alone issue. I guess it’s just a danger I have to face alone from now on.

I’m still waiting on the neurologists to call and make an appointment. All my friends including my buddy whose girlfriend died from my condition, and my house-mate who is a nurse at St. Joseph’s hospital say that Humboldt county is grossly understaffed medically and that’s why it’s almost impossible to get appointments around here. The under-privileged minorities simply aren’t accepted. Fowler started acting stand-offish when I told her my girlfriend was waiting outside (discrimination). I thought it would make her feel more accountable but instead it made her angry, and I was thrown out. It’s been suggested that I move to a bigger city to look for medical help. I’d gladly pick up and move, but how? I can’t drive, and once I got to Santa Rosa or San Francisco I’d be starting from scratch with no money to speak of. I can’t even afford a bus ticket South any more. I spent my last bit of cash today on some food to get me through this week. I don’t think trying to move by bus to a city I’ve never been to in order to wander alone into more medical facilities looking for help is a good idea.

This isn’t something that’s just going to go away if we ignore it. I may have better days and worse days but epilepsy is for life. I’ve stretched my strength, my pain tolerance, and my money as far as it could go. I stayed employed as long as possible and found a place to stay for the month while I figure things out. What I really need now is some support from my family. Friends have offered to lend me money if I run out of food, and more friends have offered to drive me places sometimes, but I don’t think my friends should have to take the role of my parents. If I was having some sort of mental health crisis right now, I think you guys would be jumping to try and help me make a plan to get better. But for some reason this actual physical illness is sortof passing under the radar. Dismissing me with phrases like, “That sounds really rough,” and “we really hope you feel better soon,” and “I’m sure somehow it will work out,” is grossly disrespectful to my condition, my suffering, and the reality of what I’m going through.

I can’t fix this or make it go away. And I’m doing everything right as far as signing up for benefits. I think I may be able to get signed up for food stamps as early as this week, but state disability takes months to go through. I’m sure it won’t pass through by the end of the month. So when September rolls around, I suppose I’ll be homeless. I’ll try to drive my truck somewhere inconspicuous and camp out of it, but the cops are very harsh on people who sleep in their cars, and the discomfort and stress may cause my condition to get dangerously severe.

Should I keep going down this path of signing up for Humboldt County based benefits? Do you really think that living alone in an apartment in your town, which is even more remotely located than mine, is a good idea? You once spent $30,000 on my ‘mental health’ thinking it would fix my brain – but now there’s actually something wrong with my brain and your nonchalance is painful. Why can’t we talk about some kind of plan for my health? What ideas have you had? Have you discussed it at all, or is this another one of those things “we just don’t talk about?” (Quoted from my brother – ‘It’s just not our family’s ‘way’ ‘)

I’m curious to see how soon I’ll get my EEG. Right now it’s the most important thing for me to get, and the best tool they use today to diagnose epilepsy. If they call me soon and my appointment is soon, then it’s probably best for me to stay here long enough to get diagnosed. But if they put me on a waiting list because there’s not enough doctors per patient in this county, I think I should probably try to get somewhere where I can actually get help. I can’t go on living off a can of beans and a spoonful of yogurt a day, collapsing randomly and answering ad after ad on craigslist saying, “I need a place to live – I’m sure some money is coming to me soon.”

It’s a bad situation, and one I think I’ve dealt with pretty maturely on my own so far. I know you guys have been on vacation and that this is all hitting you pretty fast, but honestly I’ve been having seizures since this past winter. I think I’ve waited long enough for you guys to come around and believe that this is serious. Let’s please talk. Please help me figure something out. I’m not being immature in asking my parents to be somewhat supportive of me as I come to terms with having a long-term and life-threatening condition.

love you,
VC