Hurricanes of Ohio

There is a hurricane brewing in Ohio.

At least that is what my mom is paranoid, restless and consumed with fear about tonight. My mom suffers from several kinds of mental illness. She was diagnosed with Schizophrenia right around her 20’s. Now at 72 she has also been told she has dementia or Alzheimer’s.

Any one of those are pretty terrible. Pile all three – and you have a shit storm of confusion at any given moment.

Looking back, my childhood was very different from most. I just didn’t know it at the time.

But now – as an adult, and the fact that she lives 4 states away – it gives me some space and ability to see things for what they are.

I have had time to heal and forgive from the seemingly personal attacks. The souless look in her eyes as she would hurl insults and physical objects my way. The delusions, the voices, the paranoia, the anger.

So now when I hear she is suffering from another episode, it just saddens me. She is in a rehabilitation center worrying…in great concern that I am about to be wiped off the face of the earth from a hurricane. A hurricane in Ohio.

Her mind is taking her down a senseless track of anxiety and fear and there is no talking her out of it.

I remember sitting in the complete dark and silence – no electronic device allowed of any kind – because in her mind aliens were coming and they would enter through the electrical wires.

I remember trying to see the spiders – the hundreds of spiders that she was screaming about – begging me to get them off of her and her anger at me because I didn’t save her from them.

Pretty scary stuff. Especially as a kid. I remember thinking…she IS wrong…right?! right??

There is a natural tendency as a child to want to believe your parent – but in these cases there was a lot of confusion and internal struggles.

The brain is a mysterious place. It happens so fast – She was just fine, laughing and sounding great last week. But this week there is a hurricane in Ohio.

Living with a person with a serious mental illness is a challenge. It takes an extraordinary person to be able to handle it and understand it with compassion, love, forgiveness – especially in the midst of an episode that could involve personal attacking. I wasn’t always that person and am not always that person even now.

The distance has helped. It has given me the opportunity to focus on my own little family. To be a little selfish. I had not realized just how much of my life, my energy, my thoughts had been focused on caring for mom, worrying about her, or living in a constant underlying state of dread when the phone rings and it is her…needing rescued again from something or someone – which usually involved lots of time and possibly lots of money.

But I will always remember a conversation we had a few years ago that completely broke my heart and changed the way I deal with her and look at her.

She said in a moment of realization, “No one likes me Lee Ann. No one likes the REAL me. The unmedicated me. The raw me. People only like me when I am on drugs that make me something, or someone else”.

That is a sad and truthful statement.

She is locked inside a body and brain that has been failing her for years and is only increasingly fading out. The real, unmedicated her is an unpredictable, paranoid, delusional, angry, unstable person.

And the worst part of it all is that she is aware of it. She knows this truth.

So when I step back, and think about it in terms of pure physical illness…I am able to have compassion, patience. Just the same as if she had a failing kidney or heart. It just happens to be her brain in this case.

It is still exhausting, frustrating. The whole thing is unfair. But life is not fair.

We all have challenges to face. How you face them – THAT is what determines who you are.

I lived the earlier years of my life angry and blaming her for a terrible, scary, unstable childhood. A childhood that left scars, and some really awful exposure to some really bad experiences.

So I became that. An angry person. A victim. Resentful. Naive. Restless. Blind. Making unwise decisions and choices.

But it wasn’t because of her. All that was because I made that choice to become those things. In many ways it was coping mechanisms and I did have a right to be angry to some degree. But when it starts tearing you apart from the inside out…that is a problem.

It took me years and a few hundred miles to finally make peace out of all that chaos.

So. Here I sit in Ohio. No real threat of a hurricane. Just a heart that is sad for a very confused loved one that is fighting a huge storm of her own. And having no way to rescue her from this one.

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The Unspeakable

Every now and then I have little windows or memories of some past life. My childhood. A very far removed and strange life time ago that seems more like a thing of fiction rather than my own real history. Different things trigger these memories. Usually horrific news stories. Today I heard about a mom that killed herself.

It reminded me of a day that my brother and I have never spoken of since it happened 30 years ago.

I was getting off the bus and as I rounded the corner I saw an ambulance at my house. I started running toward the house and saw the stretcher being wheeled out. The body on the stretcher was covered completely. My brother who was about 16 at the time walked silently behind the medics. Why were they all walking in slow motion?!

At this point my heart had dropped out of my body and I couldn’t feel my limbs as I ran toward the house screaming like a maniac. I remember thinking – I know I am screaming, but why can’t I hear myself! All I could hear was my heart pounding in my ears like bass drum…so I tried to scream louder because apparently my voice was not working.

And my legs weren’t working right – they were numb – like stumps of concrete attached to my body. I couldn’t focus…I saw my feet, the sky, the house, the stretcher, my legs, my brother… As I got closer my neighbors grabbed me and took me to their house.

They reassure me everything is going to be fine and try to distract me, but tell me NOTHING! I was like – what is this? Bizarro world? What the hell? I believe they even tried to get me to play checkers and eat spaghetti. I felt like a caged animal, but yet was too scared to do anything but sit there blankly.

I am not sure how many days it took to find out. I really don’t remember much after that. I have no idea where I even stayed that night or the night after that. But here is what had actually happened that day.

First, you should know some brief history. Mom had been severely ill. So chemically imbalanced she was functioning more like a 99 year old person on major drugs than a 38 year old. This is really weird for me – I am now 38. It is at THIS point in her life that my own mother gave up on life.

She talked with a severe slur like she had cotton in her mouth, and very delayed speech. Her speech didn’t make sense, she would repeat herself over and over and talk to things or people that weren’t there, or act like you weren’t there. She would be overly expressive with dramatic mood swings where she would be so very kind one moment and turn into a raving monster the next.

She was very, very ill. She should have been in the hospital at this point. Dad and her had already divorced, but were trying to reconcile. Or shall I say, dad wanted to reconcile. Mom was really not on board with the plan. For some reason, being around dad made her worse. But dad wanted to help. He really thought that he was doing a good thing and trying to take care of her.

But finally one day, she really couldn’t take it anymore. She had tried to overdose before on prescription pills, but those were really half assed attempts more for attention than anything.

This time was different. She proceeded to get undressed, draw a nice hot bath…and then start slitting. She slit both wrists and waited for death.

She had it calculated out just right so that by the time I got home from school I would find her quite dead. But she just didn’t count on my brother having some kind of sixth sense.

Sometime around 3:30 my brother suddenly felt the urge to leave football practice and drive home as fast as he possibly could. Something made him fly into the house and find her like that. Something made him save her just in time. Something made him be the hero that only he could have been and prevented his 8 year old sister from witnessing something that would have totally destroyed her.

Yes – my mother was not successful. Not like the mother that I heard about today.

My brother didn’t speak to anyone for about a year. He is still a man of little words, but that year was a year of silence. And 30 years later, we have still never spoke of the “event”.

Once we were at a family dinner years afterward – we were both adults. I think it was Thanksgiving or something. After the big meal we were both just relaxing and sitting on the couch while dad flipped through the channels. Mindlessly dad stopped at a graphic scene of a woman that was sitting in a chair with a slit neck, just bleeding to death. For some reason dad just stayed on that scene until I had to say, “Change the freaking channel!”

After what seemed like 5 minutes, of just sitting there staring off into space at images flipping through the stupid TV, my brother and I looked at each other with wide eyes in shock as we both realized we had clinched fists and were barely breathing and we knew exactly what the other was thinking.

Somehow we actually managed to laugh – because we both looked so ridiculous with our wide eyes, white knuckles, and shallow breathing as if we had both seen a ghost – underwater or something. Not to mention the awkward tension you could feel because dad felt like a complete jackass and was trying to pretend nothing happened, which made it oddly comical.

And THAT is the closest we have ever come to having a conversation about the unspeakable.

My brother and I used to be like that. So close that we didn’t even have to talk to know what the other was thinking. Though we were 8 years apart, we grew extraordinarily close because of the bizarre circumstances under which we lived. We were the only sane ones in the family. We were the adults and we realized we were doing a really lousy job of raising our parents!

Sadly, today, my brother and I barely speak. We are no longer the close siblings that finish each others thoughts and sentences. Honestly, we don’t even know what to say to each other. We each have our own busy lives and children to raise.

We each have thrown ourselves into parenthood with such tenacity and overzealousness that from the outside might just look like an extraordinary effort at parenting (not saying that I am an extraordinary parent – but at certain times I have been guilty of losing myself to parenthood altogether). With closer examination perhaps it’s more like an attempt to over compensate for or give our children the polar opposite of the childhood we knew.

Growing up with a parent with a severe mental illness is a very scary, confusing and lonely path. You don’t really know what is normal, so you try to make your very crazy circumstances somehow “normal” just to cope and survive. But in doing so, you warp your whole developmental ideas, foundation, and dreams of the future.

Just like a pendulum swinging wildly out of control, at some point, it has to come to a rest somewhere in the middle. That is where I am right now. Trying to find that balance in the middle.

I am finding that balance, coincidentally because I am divorced. I am forced to take a step back and some time out from parenting…if even for brief moments of time. I am forced into having some me time. My brother doesn’t have that.

Ironically my mother and I have a somewhat decent, yet superficial relationship. I have accepted long ago that even with some awesome medical breakthroughs, she will still always be limited in her capacity to love, give and be a “mom”.

More ironically, my brother and mother have a nonexistent relationship. My mom loathes the son she gave birth to that saved her life. My brother has given up trying to help or save her over and over from all kinds of other dramas of her exhausting self destructive life.

And strangely, she is probably more healthy than maybe ever before. Were we all enabling her? By trying to help her all these years, were we making her worse?

Sometimes I get so sad that I don’t feel like I have a brother anymore. I have mourned that relationship for years now. I have been angry and hurt beyond belief, but then I remember…how he was the hero that I will always be indebted to. How he witnessed and carried the burden that I was supposed to have carried. And I realize I could never stay angry at him.

Because no matter how hard I try to understand what he may have actually saw and the magnitude of what he shielded me from – I will never be capable of fully grasping – the unspeakable.

The Crazy Truth

Mental illness is a strange, sad and elusive phenomenon.  Thankfully we have come a long way from the days of just locking people up in chains and to chairs and beds.  I visited Colonial Williamsburg this past year and stumbled upon a “museum” of old mental institution devices and equipment.  It was horrifying.  Making matters even worse was the fact that I was there with my mom, who was diagnosed with schizophrenia when I was very young.  It was a surreal moment.  And a bit (side step, side step)…awkward!

She has battled with the disease since she was probably in her teens in all reality.  True to a classic text book case, major symptoms didn’t start showing up until her 20’s, coincidentally shortly after she married dad.  Dad spent the next 14 years in denial about it all and trying to “fix” the situation.  He is such a sweet, caring and loyal soul and just wanted everything to be right.  To this day, sadly, he still carries around some seriously misplaced guilt and sense of failure that he didn’t succeed. 

After multiple hospitalizations, a few doses of shock treatment therapy (now there is an archaic torture method) suicide attempts and eventually mom just flat out leaving, he was left with no choice but to let go.  I hate even going into it.  But I have to face some of it again.  When her medication is right, she is fairly normal (wickedly funny and smart) and she can go for months and even years episode free…almost 5 years for her now.  But she’s going back to the hospital and she is in a different state with new doctors.  They need to know some of her medical history, and I am just the lucky girl that gets to do it.

So I am wrestling with ghosts of the past that I would rather leave behind.  That causes sleep to evade me…so why not blog it out.  This blog is slowly becoming my new BFF.  And honestly with as many readers as I am gaining at this point, I am sure at least one person may relate or benefit from it.  I’m at a place in life where I’d like to use some of the negative experiences in my life as positives by reaching out to other folks in the same boat – or at the very least, raising some awareness of this sensitive and almost taboo like condition.

I remember not telling anyone what was going on because I was embarrassed and certain I or mom would be made fun of.  I was afraid of rejection because things seemed weird…which made ME weird – or worse – maybe like her (Ironically, however, now that I am older I realize that I am both weird AND a little like her, which isn’t completely terrible on either accounts).  I was so confused, yet so desperate for some kind of help or attention that I ended up getting in trouble sometimes.  I dreamed of running away or escaping all the time.  While most kids were being grounded from TV, I would get grounded from electricity, “Because the aliens were in the walls and could enter through the outlets”. 

Once she went to my closet thinking it was hers.  She got so angry that the clothes didn’t fit her that she ripped every single item to complete shreds and threw them at me.  Granted, we were struggling financially, so she didn’t have a ton to shred, but that made it even harder because those were my favorite special dresses.  No one quite understood why I didn’t wear dresses for years after that.  To this day, in fact, wearing a dress is really big deal to me.  Some of my closest friends have rarely seen me in one.  I think I am going to make a point to by some dresses some day. 

Those are just some examples of the milder things that happened to give people insight to what other families might be dealing with.  I’m not going to get into some of the more graphic/gore things I have been through.  I’m not ready for that yet.  That is between me and her doctors for now.  But I can say that during those times she would become someone else.  Her eyes were like black holes…there was no trace of my mom.  I can totally understand where horror flicks get some of their material.  It did honestly feel like a battle between good and evil at times…as if she were possessed or something.         

Of all the diseases, this is the one that gets swept under the carpet or placed in the secret files of things we don’t talk about.  I mean, there are not a lot of prayer chains going out for “crazy people” or their family.  This kind of news usually spreads by more of a gossip trail where the typical conversation goes something like this, “Oh, did you hear about so and so…my, my, what a sad pity.  SO! Did you hear there is a sale at Kroger’s this week”?  It’s usually not an honest, heartfelt or constructive kind of thing.

Victims and their families can feel very alone.  Seriously…when is the last time you heard of some 5k race or awareness event for “Mental Illness”?  See?  All kinds of comical possible names for these events are coming to my mind too (The 2009 Bike for Nuts or the Crazy Run – and the route would be all tangled up and confusing) Yes…you HAVE to have a sense of humor about it, or you will go crazy yourself.  It isn’t well publicized because the faces of this illness are not usually really cute, or pretty and tug at your heartstrings, so it is hard for people to get behind it.  There are no meal deliveries, gift giving collections, or any of the things that families might receive from the community when someone has surgery or a well known “respectable”  illness.

Mental illness is so misunderstood and carries such a negative connotation to it…like it is something to be shameful about.  People with mental illness feel weak, and like it is somehow their fault and that they should just be able to “will” it away or something.  It’s probably the most alienating, scary medical conditions out there because there are so many undefined variables and it is not easily measured.  It’s not like Dr’s can say, “OK…you have this stage or level of the disease and here is what you can expect”.  It can keep changing.  And the treatments keep changing.  It’s all very mysterious, subjective to interpretation and exhausting.

The saddest thing to me is to watch HER struggle with it…she KNOWS she has it.  She WANTS help.  But then she fights so hard against it.  She becomes like a wounded wild animal that needs help, but when you get too close she lashes out and personally attacks you or the doctors trying to help.  Everyone is the enemy because she also has some paranoia, anxiety and other symptoms that come into play. 

Even though there is a proven chemical imbalance, a malfunction in the brain or glands supplying certain needed proteins or whatever, it is still a hard concept to fully comprehend – especially when the person suffering from these conditions can seem so normal one moment but then be hallucinating or become a completely different person the next moment. It is easy to think the person is faking to get attention or using it as an excuse to act out in a completely inappropriate way.  And it doesn’t help the cause when some people actually do fake it.  But there are so many families who are living with the real nightmare.

I have forgotten so much of my childhood.  Huge chunks are just gone.  But some things I can’t forget as much as I try.  It has taken me years to distance myself enough from the situation to analyze it for what it is, remove my personal feelings from it and be able to forgive her – and just let it go.  I also had to face the hard fact that she will never be the kind of mom/mentor/model that I wish I had in my life.  But at least I have her and that is more than some people have.  AND I have a step mom that has done a great job of filling in the gaps and becoming a beautiful mix of guardian angel/friend/mom.  

If you’re reading this, HERE is the take home point…if you or someone you know is going through something like this – be cautious and choosy of whom you confide in, but don’t isolate yourself.  My hope for you is the courage to face it and not be ashamed.  I can’t offer specific advice – I’m not an expert.  I can only speak from my perspective.  And if you have children, ironically one of the best reasons why you SHOULD seek help (the first reason is for you…the second best reason is for your children) is also the main reason people DON’T seek help – because of the fear of losing them.  And that plain sucks.  And the truth is, that may be the best thing for everyone at least temporarily if the situation is severe enough.  But in many cases when approached with honesty and integrity children can remain in the home and everyone benefits from the help being sought out.      

And if you are on the other side of the equation and know of someone or a family going through it – treat them humanely and offer the same kind of help you would anyone else going through a medical condition.  But also know this…don’t take it personally if you are not greeted or thanked properly.  And know that it can be long term chronic issue.  Family members – especially children should be given the chance to talk about it now and then.  While the person suffering from the condition is surrounded by doctors, psychiatrists and therapists, the children left at home often feel alone, confused, angry, and isolated.  We also moved a lot, which made making friends hard and only increased the loneliness. 

Sorry for the long, downer post this time – but I figured you could handle it after the Grover post.  I almost trimmed it down, but I am doing this for me and wanted to be true to myself.  It’s good to get this out though.  Now it’s time to move on, let it go and think about happy things.  Like with anything in life – don’t dwell on the past or even the present trials.  Deal with it, but don’t forget to live, laugh and find the beauty of life all around you.  I promise a funny, light hearted post next time.