Life Inside Panic

This is a beautifully heart wrenching piece of writing. It really shows the loneliness and desperation that both her and her mother are feeling.

“The Times : November 15, 2008…
Growing Up With A Mentally Ill Parent by Francesca Okeke
Imagined enemies at the gate, bugged TVs… In a raw and revealing dissection of her childhood and life now, writer Francesca Okeke describes what it’s like growing up with a mentally ill parent.

Francesca Okeke

The letter box is thickly wrapped with masking tape, inexpertly applied, the house alarm is permanently on and, when not in the bath, Evelyn Okeke sits in bed, ramrod straight, one hand on her tattered copy of the Bible.

The door is wearing its plastic protection because she is convinced that people unknown are, at some point today, going to post petrol bombs through it. Despite her genuine terror, she still sounds almost relieved, triumphant even. With one action she has foiled them. Okeke 1, Forces of Evil 0.

“Promise me,” she weeps, “you’ll be careful, and if you see anyone following you, come straight home.” “Yes, Mum,” I soothe, briskly, “of course,” as I hurry out of the door in an attempt to be on time for work. Her face betrays no semblance of the urgency that coats her voice with a thick layer of panic, as if she is wearing a mask; her words are at odds with her expressionless features.

She is, we agree, having a “psychic attack”, hence the door, the alarm and taking refuge in the bathroom, where the prying eyes of hidden cameras cannot, for some reason, see. Submerged in water is the only place that she feels safe, so she reasons that she must actually be safe. People like her are always targets, she says proudly, but nobody said that having second sight was going to be easy. This is her burden and she is proud to bear it. Except I don’t really agree, and my fingers are crossed behind my back. I’ve lost count of how many times I have nodded in agreement with my free hand defiantly crossed out of sight. Whatever – the point is to try to keep her feeling as safe as possible while I am out of the house.

My mother has regularly exhibited signs of being a paranoid schizophrenic, and over the past 30 years there have been many such episodes. When I was 8, she told me specific radio DJs had special messages only she could decipher. At 11, she was convinced that a conspiracy of friends, family and work colleagues was trying to make her resign her job. As a teenager, I was regularly admonished for telling my friends the most innocuous pieces of information. That was rule number one: don’t tell anyone anything. Ever. Now, that rule has been turned around – I avoid telling her anything that could be construed as controversial.

I spend most of this woeful day on the phone, trying to persuade her not to call the police to report the circling helicopter she swears is tracking her every move. When not issuing strings of reassuring sentences, I’m trying to persuade her boss not to sack her for failing to go to work. Would you bother to call in sick if you thought somebody wanted your family dead?

“She’s near a breakdown, Francesca,” says her well-meaning boss. “Near?” I reply, too bewildered to say that, actually, she is slap-bang in the middle of one, and no, it isn’t the first, second, third or even fourth time, and yes, I would like some help, please.

I was 30 before I realised that my mother’s “eccentricities” were slightly more pathological in nature than just the jagged edges of a complicated character. Writing that now, all these years later, feels slightly pathetic but, in my defence, I thought it was normal. My childhood was difficult but not unhappy, we were poor and Mum was mentally fragile, but I was a child and didn’t intellectualise her behaviour. By the time I started to think about it, “it” was normal, and I was too busy whizzing up the career ladder as a journalist. Looking back, she has probably been like this all her life; she’s certainly displayed strange behaviour for all of mine.

Three weeks after I speak to her boss, it’s me who’s handing in my notice. My mother is having the mother of all breakdowns; now is not a good time to be writing about spoilt pop stars, effectively my job description in my role as a press and marketing manager.

Mum, sensing trouble, also resigns from her job, realising that, otherwise, not only would she have to undergo some kind of medical on her return, but that she would have to go to the doctor for a sick-leave certificate. Neither of these things can happen – mad she may be, stupid she is not..

Ironically, Mum had been a disability nurse for 25 years, cheerily caring for those physically incapable of doing so themselves. She can be strangely callous about things that she doesn’t consider important, but about physical illness she is all sympathy and kind-hearted empathy. Her illness means that she cannot see that anyone else’s emotional problems are worthy of her attention.

Now we are both unemployed, but she is at least happy. Her biggest fear is that the “they” who are out to get us, do so while one of us is out. So now, there is no “out”. There is just “in”, and that makes her feel secure. Financial adversity gives Mum life-is-hard bragging rights; but we are a team and have withstood worse.

As a teenager, I told her that I was going to college to study, when actually I was going to work. I understood that money worries made her worse, and so I wanted to work to ease some of the pressure, but to avoid a parental conflagration, I didn’t tell her. A couple of years later, as an 18-year-old trainee journalist, I left London to learn my trade on the South Coast – I was happy and so was she. It wasn’t until I started working for a music broadcaster, three years later, that her behaviour took a definite turn. She would write letters to my colleagues, haranguing them for perceived transgressions, leaving me making bewildered apologies to people she had never met. Some time later she wrote a long rambling letter to my boss’s wife. It was around this time that the truth gradually dawned on me: other people didn’t behave like this.

When I was a child, there were lots of things Mum couldn’t do: go to the shops, collect the child benefit, or housework. It wasn’t that she was physically unable; rather that she had misplaced her will, but was always hopeful that it might turn up at any minute. She covered her inability to do anything in the house by forcing me to be independent. I took on the role eagerly, an award-winning performance of nurturing, caring motherhood. At the age of 8, I was well known on the high street, eliciting extra apples and winks from Ron the greengrocer, and a friendly and regular admonition from Mr and Mrs Singh in the Post Office not to spend all of the money at once.

I cleaned and polished the house, went to the launderette and asked, quietly, for credit in local shops – without which we might well have starved. “Hello, Mr Mann. Mum says will you let us have some bread and milk, sardines and cornflakes and tea? She’ll give you the money next week.” The shame of having to ask for something that I need has never left me.

Mum, weighed down by a tangible sadness, slept, alone – my father having taken the sensible option to return to the West Africa he hated in the face of an unreliable, unreasonable and demanding wife. Apparently, she asked Dad to leave, finally realising that their relationship was doing nobody any good, least of all me. He retaliated by saying that, if she were to demand that he leave, he would never see me again. In one fell swoop, I went from child of the house to mini co-conspirator.

She had (and still has) an unnerving habit of addressing letters to one person and sending them to another; this is meant to be a heads up, a warning that she knew what they were up to, and Was Not Having It. In her world, people plotted against us, and by warning them in this way, she could try to control the outcome.

My childhood is scarred by memories of her scurrying up the road to the post box in nightdress and curlers, as if speed alone would be her saviour. Who is “they”? That is a question only she can answer. The only thing I can say with any certainty is that the “they” have remained remarkably consistent over the past 30 years.

Mental health illnesses are cruel because the brain convinces you that what you see and hear is true, even if what you see and hear is hallucinations. It seduces you into believing that all of the minor coincidences of life are clues to a bigger conspiracy. It teaches you to trust no one. It demands that you and you alone are the holder of the truth. It is, above all else, terrifying and exhausting in equal measure. I have, over the past seven years, read reams about her symptoms, which is what leads me to believe that she is suffering from paranoid schizophrenia – but I am not a doctor. Schizophrenics of popular imagination are dangerous and violent – she is neither, she’s just Mum.

I have been spared no detail of the horrific things she was convinced were happening. Relatives and strangers ganged up with her former employers to stop her getting a new job; sinister men followed us around South London, hiding in the shadows. The phone box at the end of the road was bugged, as was our enormous black and white TV, and there was a recording device in the oven.

Trying to get explanations I could understand was problematic, to put it mildly. I was a literal child and would constantly ask questions that she couldn’t answer, her face heavy with sorrow at the thought that her daughter could be an unbeliever. Prissily, I needed to connect A, B, C and D before I could arrive at E. She could go from A to Z with nothing so much as a safety net between them.

Financially, things were now difficult; poor when there were two incomes, we were now sliding into uncompromising poverty, as Mum had stopped working once Dad had left. In the Seventies, when we were a two-parent family, Mum working nights and Dad working days seemed the perfect solution for a couple out of love but with nobody around to take up the child-minding slack. Dad’s going made this unworkable. So, she decided to stop working nights and stay at home with me. This came as a bit of a shock. A true daddy’s girl, I was used to his company when Mum was at work. I’m not sure if I saw her presence as a consolation prize for his sudden absence, but I suspect as much.

It was just as well – she was in no fit state to be working with sick people. Unhappiness radiated from her. Into the Eighties, she put a spin on her unemployment, saying that she wanted to be home when I returned from primary school. And I was glad that she was. When she was having a good day, she would be up and dressed; the table would be laid and the smell of cake would hang in the

air. On a bad day, she would be in bed, curtains drawn, with nothing but the smell of misery. Occasionally, the good times would trick me into thinking that she had somehow been “cured”. A comment about people following us, or a “message” from a radio DJ, would swiftly put me back in my place. Just because she isn’t talking about it, doesn’t mean she isn’t thinking about it.

This went on my entire time at primary school, and, all the while, I was beginning to recognise the triggers: unpaid bills and letters from the bank were all filed in the bin before she could read them. Thoughts were edited before they were uttered. House rules were kept. She demanded total loyalty; transgression was punished by being sent to Coventry. When I was 11 and starting secondary school, she returned to work part-time, then full-time work when I was 13.

Whenever a breakdown beckoned, she was adamant that she didn’t want to see a doctor. Partly because she didn’t think there was anything wrong with her, but also because she recognised that, were she to articulate the horror of her life, she could get carted off. So, we continued on together, like a warped version of The Golden Girls, our secret locking us together.

Once I left school, our lives settled into a pattern. I would try to keep her insulated from stress, recognising that financial difficulties would propel her towards emotional meltdown. Sometimes though, despite my best efforts, the doom would descend: she would try to restrict my life in order to keep me “safe”, and I would repel her efforts, to keep me sane. She pulls me, I push her.

Once, bitter, teary and weary, I went to my doctor to see if Mum could be referred to the local mental health team. Would you like Prozac, she asked. Er, not really, I replied, but I would like a psychiatric nurse to visit. Apparently, Mum has to be referred by her own GP. Except she hasn’t got a GP – physically, she is as strong as an ox and has never needed one, and besides, there is nobody as leery of a doctor as a nurse. My one cry for help went unanswered; Mum was right, it’s just the two of us.

The letter box survives, but, like a victim of a horrific chemical accident, remains scarred. The Bible remains within hand’s reach. I have learnt to live my life on tenterhooks; there I remain, waiting for the next time.

Some names have been changed”

I can’t believe people are actually even thinking of this. It brings to mind using shock therapy to treat patients in a mental hospital. Wow! I don’t even know what to say to this one.

From the Associated Press…

“Study: Brain stimulation may ease anxiety disorder

By STEPHANIE NANO

NEW YORK (AP) — The same kind of deep brain stimulation used to treat some patients for Parkinson’s disease also helped a few people suffering from obsessive-compulsive disorder, French scientists reported.

Their study involved only 16 patients, but in four of them, symptoms nearly disappeared. However, many patients had serious side effects, including one case of bleeding in the brain.

The treatment involved an experimental brain pacemaker, and it reduced repetitive thoughts and behaviors in some of the patients — just as it blocks tremors for some Parkinson’s sufferers.

The researchers came up with the approach after noticing that two Parkinson’s patients who got the treatment also saw an improvement to their obsessive-compulsive disorders. Other small studies have targeted a different part of the brain for that disorder and depression.

In the French study, symptoms were reduced more than 25 percent, the researchers said.

The results are “very encouraging,” said the study’s lead author, Dr. Luc Mallet of Pitie-Salpetriere Hospital in Paris. In an e-mail, he said the procedure should be used only in medical studies at the moment because of the possible side effects.

The findings are reported in Thursday’s New England Journal of Medicine.

About 2.2 million American adults have obsessive-compulsive disorder. It involves recurring, unwanted thoughts, such as a fear of germs, and people who have it engage in rituals such as repeatedly washing their hands or checking on something again and again.

Standard treatment, antidepressants and psychotherapy, doesn’t work in everyone. The patients in the French study were severe cases who didn’t respond well to treatment.

All had surgery to have the pacemaker — similar to a heart pacemaker — implanted in their chest and connected to electrodes inserted into their brains. Each patient had the pacemaker turned on for three months and turned off for three months. Neither the patients nor their doctors knew when the device was on or off.

The researchers used different tests to measure changes in symptoms. In one evaluation, after three months of stimulation, the severity of symptoms overall had dipped to 19 on a 40-point scale, compared to a score of 28 after three months of no treatment.

Eleven patients had serious side effects; one had bleeding in the brain and two had infections from the surgery. For some patients, the stimulation resulted in a mild form of mania and other problems that went away when adjustments were made.

Mallet said the area of the brain they targeted — the subthalamic nucleus — deals with motion, thinking and emotion. Previous studies for obsessive-compulsive disorder, or OCD, focused on regions involving mood and anxiety, he said.

“We’re still not exactly sure where the sweet spot is in the brain to reduce the symptoms of OCD,” said Dr. Wayne Goodman, a psychiatrist at the National Institute of Mental Health. “Even if you think you’re in the right neighborhood, you may be one block off. And one block off in the brain may be just 1 millimeter.”

Goodman said he was initially alarmed by the serious side effects but noted that many were temporary and others were not unexpected. He said the challenge will be deciding whether the risks are worth it for individual patients.

Another French researcher, Dr. Antoine Pelissolo, said the patients in the study, who now all have their pacemakers turned on, are still being followed. Researchers are also testing stimulating two areas of the brain at the same time, he said.

The pacemakers used in the study were bought from Medtronic Inc., which had no role but paid for the researchers’ meetings. Some of the scientists have received consulting fees and grants from Medtronic.”

From the department of labor…

“Fact Sheet: The Mental Health Parity Act

U.S. Department of Labor
Employee Benefits Security Administration
October 2008

The Mental Health Parity Act (MHPA), signed into law on September 26, 1996, requires that annual or lifetime dollar limits on mental health benefits be no lower than any such dollar limits for medical and surgical benefits offered by a group health plan or health insurance issuer offering coverage in connection with a group health plan.

MHPA applies to group health plans for plan years beginning on or after January 1, 1998.  The original sunset provision (providing that the parity requirements would not apply to benefits for services furnished on or after September 30, 2001) has been extended several times. If you have questions about the sunset provision, contact the EBSA office nearest you.

The law:

• Generally requires parity of mental health benefits with medical/surgical benefits with respect to the application of aggregate lifetime and annual dollar limits under a group health plan

• Provides that employers retain discretion regarding the extent and scope of mental health benefits offered to workers and their families (including cost sharing, limits on numbers of visits or days of coverage, and requirements relating to medical necessity)

The law, however, does not apply to benefits for substance abuse or chemical dependency.

The law also contains the following two exemptions:

• Small employer exemption. MHPA does not apply to any group health plan or coverage of any employer who employed an average of between 2 and 50 employees on business days during the preceding calendar year, and who employs at least 2 employees on the first day of the plan year

• Increased cost exemption. MHPA does not apply to a group health plan or group health insurance coverage if the application of the parity provisions results in an increase in the cost under the plan or coverage of at least one percent”

Basically this means that mental illness and physical illness treatment must have the same annual limits but could have special rules such as different co-pays and deductibles or limits on visits. But this only applies if you work for a company of more than 50, it won’t raise the cost of the plan more than 1%, and you are not seeking help for substance abuse. Not a great deal of help but it was a step in the right direction and allowed for the next step, The Wellstone Act.

The new Wellstone Act changes MHPA in the following ways…

While MHPA imposes restrictions on annual and lifetime limits, it does not stop a health plan from imposing special rules for mental health benefits such as deductibles, co-pays, coinsurance and number of visits allowed. The Wellstone Act prohibits any of these types of restrictions and includes substance abuse treatment under the mental health category.

The exception under MHPA for employers with no more than 50 employees continues under the Wellstone Act.  However, the increased cost exemption changes from a 1% increase in cost to 2% in the first year and then goes back down to 1% in subsequent years. And, the plan must be in effect for more than 6 months before they can even apply for this exemption.

MHPA and the Wellstone Act do not require employers to provide mental health or substance abuse benefits.  However, if an employer chooses to do so in its group health plan, these requirements must be satisfied.  The Wellstone Act begins to apply as of the first day of the first plan year beginning after October 3, 2009 (January 1, 2010 for calendar year plans).

Ok. I guess I should probably tell you a little about myself. My name is Christy and I’m 29. I come from a very large family (6 sisters and 3 brothers). I have wonderful parents who have always given me everything I needed or wanted. I guess you could say I am spoiled but I know how hard they have worked to provide me and my siblings with the lives we have and I appreciate every single thing they do for me. I have been blessed with an extraordinarily loving and supportive family, from my parents and siblings to my grandparents and aunts and uncles.

We moved around a lot when I was growing up but I always made friends quickly and really loved my childhood. School came easy for me but I didn’t have the patience for classes so I spent most of high school at the mall, river, or partying with my friends. I only graduated due to an accelerated program that essentially allowed me to gain credits by testing out of the classes. I started my senior year with 6 credits and graduated with 21 and a half. That was 1/2 credit more than I needed. I have had anxiety and depression issues since I was a teenager. I can remember in high school feeling very empty and alone even though I was surrounded by tons of friends. I found that by getting high or drinking I didn’t feel that emptiness as much and I spent most of my teenage years in a haze. But, I must say that I had a lot of fun.

I moved out of my parents house at 18 and ended up getting pregnant shortly after. The pregnancy was ectopic and the experience sent me into my first downward spiral. I was so sad that I didn’t want to see or talk to anyone. Most days I wouldn’t even get up to shower or brush my teeth. My friends called and called but I refused to answer. My mother finally got me to go back to the doctor who immediately started me on Celexa 40mg and I felt blissfully numb. I had no emotional response to anything. After about 6 months I stopped the medication and managed to maintain for a long time with no major episodes.

Fast forward about ten years. I was doing pretty good. I had a great job, great friends, cute condo, cute convertible, and very little stress. I had sworn off relationships due to a couple very bad experiences. I ended up in a car accident that led me to a bar where I met D. He talked to me all night and I ended up hanging out at his place after the bar where we talked till dawn and he woke me up with coffee and brunch. We have been together every day since. Our relationship moved very quickly; we went from complete strangers to living together almost immediately. I fell in love with him in a matter of weeks and knew he was the one I wanted to spend my life with. Our relationship was passionate (AKA tumultuous). We loved each other immensely but we fought hard and often. More often than not we were vicious and unfair in the things we said when we got heated. I begged him time and again to stop drinking so much and he asked me just as often to get help for my mood swings.

Almost a year and half, and quite a lot of drama, later he tells me we don’t fit and we shouldn’t be together (although we are still living together but I will get into that with another post).  Overnight I had gone from planning on marrying and having children with the love of my life to all of that being gone. I was devastated; all I could do was cry. I went back on Celexa (although only 20mg) and started taking Atavan to help with my increasing panic attacks. In the midst of this I was going through some pretty serious medical problems and my family suffered a major crisis. I ended up missing work or having to leave early because there was just too much happening and I couldn’t keep it together. It all came to a head when I had had a complete breakdown at work and was sent home by my supervisor, who told me to get in to see someone or she was taking me to the crisis center when she got off work. I saw a therapist that day and was put on medical leave from my job. My work ended up denying the leave and terminating me. Now I am taking my meds, going to therapy, and trying to fill a lot of free time.

So, that basically brings us up to date. I tried finding more information about what was happening to me online and was pretty disappointed with what I was able to find so I decided to put something together myself. The site was progressing nicely until I decided to change it around and all of my content was lost, so we are back at square one. I really hope that this site evolves into a support group where people find a sort of haven to talk and find answers to whatever questions they may have. I will try to update this site and add information frequently. Please comment on anything I post from my blogs to the articles and such. And definitely check out the forum.

Hope to talk to you soon.

Christy

So, I have to re-post about this book. I had originally written about it a couple weeks ago but in the process of redoing the site I lost all of my posts.

The Feeling Good Handbookwas recommended to me by my therapist after my depression became very severe. The book forces you to reexamine your thought process through a series of explanations and exercises. I, personally, didn’t put a lot of stock in self-help books before this but now I am changing my mind. I have found it very helpful in starting to understand and control my negative thoughts. I highly recommend this to anyone having trouble with anxiety or depression. Give it a look and see what you think then comment to let others know if it was helpful for you as well.