Pediatric Mental Illness
5 in every 1000 people have Schizoaffective Disorder.
This is his story:
He never had a chance.
Our father left our mother when she was six months pregnant with their third child - my brother Daniel. My mother came home from work to discover that their closet was depleted of his clothing and promptly had a panic attack.
Earlier that year, my father had had a motorcycle accident. The only thing that saved him was his helmet, which cracked in half upon impact. He was hospitalized and the doctors said that it would take him at least ten years to get back to where he was mentally before the accident.
He was 21 years old.
I can't help but to think this brain damage resulted in many of his problems thereafter.
During this hospitalization, it was suggested that perhaps the baby wasn't his. It's a mystery as to why - perhaps it was a theory he came up with while on pain medication. Regardless, it put a damper on things. His parents hadn't exactly liked my mother in the first place.
Five years and three kids after their marriage, my parents got divorced.
Daniel was born on our father's birthday a few months before the divorce was final. He looked just like his big sisters and there should have been no doubt that he had the same father. Still, the idea lingered.
I was proud of my brother. He was a good baby and later, a good kid. He was, however, different. He flapped his hands when he got too excited and his speech was odd - only I could understand him, so I had to translate for the rest of our family. I took my brother under my wing and cared for him as if he was my own child.
The problem was - I was only four years his elder.
When Danny started kindergarten, he got in trouble for smearing poop all over the bathroom within the first week. The teacher said she couldn't handle his energy level and he was referred for psychological testing. It was determined that he had "difficulty processing information." My mother recalls that when he asked the evaluator where she lived and she replied, "in a house," he got frustrated and the testing went downhill from there.
He'd wanted an address.
He was placed in a special needs class with children who were severely mentally disabled - much more so than he was. He was prescribed medication for Attention Deficit Disorder. Perhaps this was due to the fact that our grandmother (our babysitter) regularly gave him a combination of Benadryl and expectorant every day before school.
I'll never know for sure.
Meanwhile, at home, our abusive step-father accompanied Danny on his trips to the bathroom and controlled his every move. When he got frustrated with my brother, he picked him up by the throat and choked him. I clearly remember this, my mother stepping in to break it up, but she doesn't recall it at all.
My brother became afraid to be by himself and developed a paralyzing fear of the dark and aliens. At night, our step-father would shut him into his dark bedroom and hold the door closed until his wailing was quieted and he seemed to go to sleep.
Danny crawled into bed with me nearly every night after our parents had gone to bed.
My brother had never bonded with our father, and after our step-father was sent to prison for child molestation, he was devastated.
Danny attached himself to our grandmother's boyfriend, who was a was a military veteran who sat at the kitchen table chain-smoking, watching television, and occasionally speaking - usually to tell us to be quiet so that he could watch his shows. He was not a great man, but my mother was happy that my brother had a "male role model."
"Boys need a father-figure," she claimed.
When we visited our father on weekends, our brother got in trouble for doing things like falling asleep in the middle of the road. He stepped on frogs to learn what color their blood was.
He was "out of control."
Never mind that he was either abused or completely ignored by the majority of adults in his life.
Never mind that he was learning social skills from the mentally disabled.
Never mind that the person taking care of him was a sister only four years older.
Danny was doped with ADD medication whenever he presented any sort of behavior problem. He continued to attend special education classes until the fourth grade, when he was abruptly switched to a new school and a mainstream class. He made no friends; he was a complete outsider.
He did manage to graduate high school, albeit late and after many academic problems. He learned to drive a car and got his license. He held down a job for a while, although I heard plenty of stories of him disturbing his co-workers with comments like "I worship Satan." He's always taken great joy in making others uncomfortable.
I'm not exactly sure when things completely fell apart for him, but I remember being pregnant, feeling frustrated by his situation and completely helpless. I'd been trying to get him to move in with me for years - to get him away from our dysfunctional family and hopefully on a better path. I still believed in him and knew he had skills and intelligence - they'd just been buried by an unfortunate childhood.
My brother never moved in with me.
I gave birth to my son, who became the center of my world. After I began dealing with my own mental illness and then a divorce, I realized I no longer had the capacity to be a surrogate mother to my brother. I had to focus on my son and myself.
I urged our mother to get help for Danny after he was arrested for breaking and entering - on my birthday, no less - and spent several weeks in jail. His behavior had been erratic for some time - he was severely depressed, had insomnia, talked about seeing odd things and communicating with our deceased father.
Finally he met with a psychiatrist and was diagnosed with Schizoaffective Disorder, which is like a combination of Schizophrenia and Depression.
His diagnosis came as a shock to no one. He'd always been a bit off and steadily declined in his twenties. The diagnosis made perfect sense.
Unfortunately, he refuses to take medication for his illness. He can no longer hold down a job and is on disability. His behavior has become so unpredictable that I can no longer allow him in my house or near my son. He threatens to kill various people on a regular basis and he harasses people (me included) on the internet.
He's not completely out of control, so he can't be involuntarily committed to a psychiatric hospital. He doesn't own any weapons and hasn't physically harmed anyone, so the police won't arrest him.
There is nothing I can do to get him the help he needs.
So I sit and wait for something bad to happen - for Danny to physically hurt someone and be arrested or committed. That's the only way he is going to get anyone's attention.
Once again, my brother has been set up to fail in life.
It breaks my heart that he never even had a chance.
I've been seeing a therapist since I was nine years old.
It started one night while I was sitting in my room, the lights off wondering why in world I even existed. I picked up a small paring knife that I'd taken from the kitchen earlier that day.
As I stared at it, thoughts about how I could end my life flooded my mind. It became too much to handle. I dropped the knife and immediately went to my mother and told her there was something wrong with my mind.
The following week I was sitting in a waiting room, permeated with the scent of hand-sanitizer and bleach. All the other kids were playing with toys and yelling. I was scared for my life. Every time I felt eyes upon me, it was like lasers burning through me. I didn't know how to breathe, how to act, where to move my hands.
An hour later, I was riding home with my mom crying. This was the beginning of my mental health care. It was scary, but I had a glimmer of hope that I'd begin to feel comfortable in my own skin.
A couple years later, after many sessions of cognitive behavioral therapy, I was diagnosed with dysthymia, panic attack disorder, generalized anxiety, and social phobia. These big four are still a major part of my day-to-day life.
Dysthymia - that one is easy. My mother has it. And when neither of us take care of ourselves or celebrate small victories from time to time, we fall into a rut that we can't climb out of without outside help.
The panic attacks still happen every day. But with breathing patterns and paying attention to triggers, I can substantially reduce the destructiveness. I used to throw things and break stuff. Now, I step back and try to find out why I'm flipping out in the first place.
The generalized anxiety? That one will never go away. No matter what I do, no matter how many times I walk into a place I've been thousands of times, I still worry worry worry. It's like nothing is comfortable to me.
Which leads me to social phobia. How does one get social phobia? I have no clue, but I would trade everything I've ever done, everything I own, and all of my friends to get rid of it. The other day I drove past Wal-Mart four times before it was okay for me to park and get out of the car.
For the last two months, I haven't been taking any medication. I've been seeing a therapist. I can't afford mental health care, so I have to go to a sliding scale facility. I am eternally grateful that I have this resource available.
However, every day without an anti-depressant is like slipping further into the neurosis I've been trying to avoid my whole life.
At times, I'm loudly talking to myself for five minutes before I realize it's an external monologue.
People I've talked to in the past, who don't know of my struggles, who talk smack about psychiatry and medicine, have it all wrong.
I do not take a strong anti-anxiety drug as a way to "forget" about my problems. I take it because it helps me to function normally in public. It makes me actually feel comfortable in my own skin for at least 6-8 hours.
I shake and I can't sleep. I constantly think about how the world would be better without me.
These have been the hardest last few months of my life, and I just thought it was worth sharing.
Thank you, The Band, for listening.
If you are feeling desperate, alone or helpless, or know someone who is call 1-800-273-TALK (8255) to talk to a counselor at the National Suicide Prevention Lifeline.
"I can accomplish anything if I just don't kill myself today."
That probably sounds either melodramatic or obvious, but for most of my life, this lifesaving mantra has required herculean reserves of emotional stamina.
Normally, that whole "don't kill myself" thing is pretty low-key, background accompaniment to the background noise of "you should probably just go ahead and kill yourself."
It's as annoying and ignorable as the tinnitus that I was shocked to learn is not how everybody hears the world.
The similarities end there.
If I ignore my tinnitus, well. I can ignore it. If I ignore my depression and the voice that says “kill yourself,” pretty soon the voice that says "not today" becomes smaller, weaker. One day, it might not be there at all. Even worse, it might eventually begin to say, "you know, that's not such a bad idea."
If untreated, depression can be fatal.
Not only are people with depression at higher risk for suicide, we are also at risk for putting ourselves in compromising situations.
From purposeful or accidental reckless behavior, to letting your health deteriorate, depression can be physically harmful if it isn’t fought with the strength and determination used against a physical illness, like diabetes or heart disease. Because depression is a disease; mental illness is not a choice, a personality trait or a way of life. This is not being emo - this is being unwell.
Chronic depression makes my life the ultimate abusive relationship; one that I can't leave without dying. It's huddling in the corner of a cold, empty room under a loudspeaker announcing all of the sad, pathetic moments of my miserable little life.
You are hopeless and worthless and invisible. You deserve your grief and your misery and your cursed existence. After every announcement comes the invitation: kill yourself.
But even when I've burrowed miles below rock bottom, I don't actually want to die, even though my depression seems to feel I do. Feasting on negativity, its tentacles push their way into every experience, every memory, every sensation as it doubles, then triples, then quadruples in size.
It needs that negativity to survive – jealousy, panic, sorrow, terror - and actively encourages the brain to supply nourishment. In this feeding cycle, sorrow or anxiety, anguish or panic, are all actually soothing. And, it’s in my brain, man. I thought I was the only one in there. My depression, at least, tells me I'm the one doing this to myself.
For years, I have listened.
Well, maybe I'm not listening as much anymore.
The therapist I started seeing a few months after my son's stillbirth has been a partner in my recovery. She is gentle but firm and hasn't allowed me to skirt around my risk for suicide - believe me, I try. Of course I still try, because part of depression's arsenal is the isolating sense of shame that makes discussing it physically painful. But she prods and - more or less - I open.
Skittish, with years of a bizarre attachment to the disease that I've known since childhood, my progress even under her careful guidance is slow and painful.
And, man - it is exhausting. Exhausting to keep saying no, I actually love living and my life is really fucking good, you bitch and please, please go away. It's exhausting to have to climb over depression before I climb over anything else.
It is exhausting to convince myself that I can do anything, if I could only find a way to stay alive.
But I do need to say it, not only because it's true, but because I am still at risk for killing myself, even though it's not at all what I want to do. Sure, I'm at less risk of suicide than I have been ever before. I am stronger and more centered; I feel far more positive than ever.
Being able to post this is itself an accomplishment of healing and progress. Yet, I'm not cured - I'm still struggling. It's likely, I will always struggle. I may never be cured. This is not something I choose; this is something I am working to accept.
My only choice against my disease is to fight it. And like the fight against any chronic illness, it is sometimes difficult, sometimes exhausting. It's always worthwhile to fight - to try and treat it, because if I don't, my depression will thrive.
If I do treat it, then I, instead, will thrive.
How do YOU get past the negative-self talk?
As the saying goes, hindsight is 20/20.
Do you have life lessons that would have helped you through a difficult time?
Share those with The Band as you write a letter to your younger self.
Dear Little Me,
First, I want you to keep playing outside by yourself in your own little world you created when you were five. Never stop, even when you are twenty-one.
Second, here are some things you need to know for the future. I wish I could tell you everything will be as great as you imagine it will be, but really, the last time you will be this happy is now, when you are seven.
I hope you remember to enjoy the time you have living in Connecticut, it will be the last time you spend that much time with Granddad. Connecticut will become one of the best teachers you ever have, but it will be much harder than you think it will be.
I want you to breathe.
Moving back to New Mexico will be hard, but breathe. Don't give up on math, actually get the nerve to admit you don't know what they're talking about anymore. You are always safe.
Middle school is horrible. Sorry, but it's true. Don't forget to hug Granddad the summer before seventh grade and tell him you love him, and talk to him on Christmas. That will be the last time you talk to him.
Enjoy Molly and Jack more, they are the best friends you ever will have. You will be petting Jack when he dies, and you will be with Molly when she is put down. Be brave, little me, and do not be afraid to cry.
Fight more in Dance, and enjoy it. All the dreams you have will not happen, you will end up getting hurt and look back and wish you'd done things differently. Don't take your anger out on anyone, just remember to enjoy dancing. You are so much more than just a dancer. Do not base all your joy on the next level, dance for fun first, and try to breathe. Dance will also give you Cat, and you have no idea how important she will be to you yet.
Sorry, but it does. Don't give up though. You are SO much smarter than what people say you are. Mum will do some fighting, but YOU must follow through. Feel free to be a little bit of a bitch, some teachers will always knock you down. Try harder and stay in a language class, you will wish you had when you are older. But most of all, ENJOY it more. High school is so hard, but it's also a lot of fun, and I wish you'll have more fun, and less depression.
Tell Mum about your depression sooner. You will get to feel more like yourself sooner.
Do NOT trust Chip. EVER. He will be the thing you wish you could change. He is a liar and a cheater, and not worth the pain. Walk away from him that night, do not talk to him.
Stay away from TJ. Trust your instincts.
Spend more time with Mum. All those times you brushed her off, you fought with her, told her next year, planned on doing things in the future will not happen. Always tell her how much you love her and what she means to you. You will realize just how much you wish you'd told her... but it will be too late.
I wish I could tell you life will be great. I wish I could tell you everything will be okay, but I don't know that. I can tell you one thing though; when you hold Grace in your arms for the first time, all this pain, all this anger, all this self hate goes away. In the end, when you watch her sleep, you know it was worth it. She is everything. Remember that.
I wish I could tell you Mum meets her, but she doesn't. Dad will never leave you nor stop loving you, so don't hide that you miss Mum. It hurts, and it's okay to show it.
Play strong, little me.
Life is great, but when drama invades, remember how to play. It will keep you sane. Enjoy being outside and playing on the beach, enjoy climbing trees and rocks, enjoy life. It will be hard, but it's worth it. So keep on dreaming and playing. Somehow, I know it will be okay.
Your Older Self
I have a condition called Trichotillomania; it's classified as an impulse control disorder. That classification may actually explain many other things about me.
Having trichotillomania, means that I pull out my hair. I currently wear my hair up to prevent myself from pulling even more.
I've had trichotillomania since I was five, when I began pulling out my eyelashes and eyebrows. Around the time I hit puberty, it got worse...I remember looking at the hairs on my head and thinking, "Wow, there are so many of them - people wouldn't notice if a few were missing."
Before I knew it, I had such a bald patch on my head that I could place my entire hand down, starting at the hairline on my forehead and not touch where my new hairline started.
After that, there was no stopping the trichotillomania. I was 12, in grade six - children were not nice. Even the people I called "friends" would chirp in behind my back. I understand - everything was about fitting in back then. I think the only friend I never heard chirp on me is my best friend since grade one. Maybe because she had her own issues bugging her, she understood. Whatever it was, it was nice knowing she was - and still is - there for me.
By the time I hit high school, I was able to manage my hair. I had a nightgown that was so thin I shouldn't have worn it anymore; it was perfect because it would only let the little prickly hairs through. This was my Achilles heel to hair-pulling and would keep the long ones safe from my fingers...
I then discovered that make up could hide some of the effects of having a bald face.
I should probably jump back and let you know that my parents tried everything they could, except putting me on medication - they didn't like the idea that their child may take a medication that fucks with the brain. Eventually, I think, they ran out of ideas to help and gave up. I can't blame them; when they would ask me about missing patches of hair, I would lie.
It was embarrassing to know that my hair pulling was so obvious. Oh, and the looks that strangers would give! Some of shock, some of confusion, some concern mixed with pity, and others were full on horror.
There was a point not too long ago where I just came to accept that trich was going to be with me forever.
Like many other conditions, this is NOT easy to live with. Something that I did come across within the past year was research saying that antidepressants have been known to reduce or completely STOP this disorder. Therapy may work, too.
I tried therapy but I just couldn't seem to stop myself. I've freaking yelled at myself and I can't stop it! I do it because it's calming, and I get a good feeling out of it.
I've tried replacing the compulsion, but nothing replaces the feeling of pulling my hair, nothing at all. After thinking about it for a few months and going through a year-and-a-half-long stretch of pulling quite badly again, I decided that trying medication might be the best thing for me. I went to the doctor and he put me on an antidepressant. I was told to give it six weeks to fully take action.
Wouldn't you know it, it fucking worked!
After three or four weeks I noticed that I was hardly pulling, and when I would, I was able to say to myself, "Hey. Stop it! You don't need or want to do this...go do something else!" AND I DID! I drastically reduced my hair pulling for an entire month!
Unfortunately, there were side effects: my emotional range became limited to very happy, very angry, or uninvolved. I had very little emotional response, unless it was super happy or livid.
Then I became sickened by even the thought of anything sexual. A kiss, a sensual rub, a playful touch made me feel ill. I talked to my doctor, and after it didn't go away, we figured it was best to stop the medication. I would rather love my husband and fully enjoy my children than stop pulling my hair!
The pulling came back with a vengeance! I had one spot nearly grown in, but within two weeks I had one large spot and three smaller ones. My eyelashes were almost grown in and before I knew it I had missing patches and thinning eyebrows.
Despite this, I figured that I had almost stopped once and I should be able to do it again on my own. It only hit me that I couldn't when, one day, putting my hair up didn't hide the large bald spot.
Back to the doctor I went - I was afraid that this time the spot would encompass my entire head if left unchecked. Unfortunately, after seven weeks I have seen no improvement. I have no self control, no growth, and I am always tired and nauseous. My sex drive has increased, but I have also gone back to thinking about previous events in my life.
Should I risk going back to the first medication and becoming mostly emotionless and sickened by the thought of sex to stop my hair-pulling of 21 years? Or do I go on to the next drug and hope it works?
The first thing I plan is talking to my husband because he was greatly impacted by my reactions when I was on them. Then I will be talking to my doctor again.
I really just want this hell to be over. I want to go and get my hair dyed and cut, and I would LOVE to wear my hair down in public again! It would also be lovely to see what I would look like with all my eyelashes and eyebrows. Maybe I would be the kind of person who looks great even without make up.
I've had a LOT of time to dream about what it would be like to look normal again...
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