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Who Am I?

I am not a “blogger,” even though I have a blog. I am not good at writing.

I have tried. I have written as catharsis. Anything I write eventually ends up used against me. I even used to write poems long ago, but what I got in return for pouring out my heart effectively put a stop to that.

I don’t know where to begin or how to form a coherent compilation of a jumbled life. There is much I will leave unsaid.

I didn’t know where I began and my mother stopped.

I am a child of a mentally ill parent. The woman who gave birth to me, whom I am supposed to call Mother, has schizophrenia. I am sure there are many other diagnosis that could be added to that, but we will keep it simple. As if there is such a thing as simple with schizophrenia.

I could write endlessly about the trauma, dysfunction, neglect, and abuse of my childhood.

The shame. The guilt. The fear. The secrecy.  Being judged from HER illness.” Crazy by association.” As a result, I think I have been depressed and angry my entire life. I never was able to have a “childhood”. The early years are a blurry nightmare. Memories that are locked away by choice and repression. Sometimes I feel like I am made up of nothing but scar tissue. Who am I?  Will I be judged based on her illness forever? How long will I carry her baggage as well as my own?

By some miracle I was given a reprieve. When I was 5 I went to live with an Aunt and Uncle and their two sons.  God only knows what they thought of the feral child they received. Merging into a “normal” household was difficult. For all of us, I’m sure. I was a child who fended for herself and had to adjust to a new way of life. At some point I started to call my Aunt & Uncle, Mom & Dad. My cousins were like brothers. Although I was still reserved and doubtful about the security of love, I loved them.

But then like a piece of property, like a borrowed casserole dish, my “owner” demanded around the time I was 10, that I be returned. Returned to hell.  I remember having an early birthday party with my friends before I left. I didn’t understand. Why would they send me back? What did I do wrong? Why was I being punished? Part of me still doesn’t understand. Even as an adult who has actually been given some of the information that as a child I was not privy to.  Only those that were adults at the time will ever truly know the whys of it all.

I became the caretaker. I felt thrown away. Invisible. Damaged. Unwanted. Unlovable. Once again fending for myself in every way. Any time I made my NEEDS known, I was told I was selfish. Like dinner. How dare I expect dinner. Or school clothes, or to have my laundry done. Or or or… infinity. Any time I tried to speak up to ask questions of my family or tell someone that something wasn’t right or even to break free of the twilight zone I lived in, I was brushed aside and told “we’ll speak with your mother”. Yeah great idea. I was screaming. No one heard me. No one saw me. Or they chose not to. Selective blindness. She was the adult. I was just the child who acted out.

Unheard. Screaming inside. Unheard. Seriously!?!? How could family simply go on living their lives like mine was disposable?

Not ONE person in my family could admit to the secret that was my mother. So I became the problem child. It wasn’t her it was me. It wasn’t HER sick twisted warped behavior, it was somehow MINE. It wasn’t because I didn’t have a functioning parent or that I was subjected to abuse and exposed to things no child should be exposed to. It wasn’t because I was expected to be her caretaker, therapist, mental and physical punching bag and be sucked into her warped reality. No couldn’t possibly be that! According to them, I was a “bad” kid. I was wrong. It was ME. I had problems. I was the cause of the problems. All of the dysfunction was MY fault.

I grew up thinking there was something wrong with me.  It has affected every aspect of my life. When I was a teenager, I finally found out what was wrong with her. Not because I was told, but because I wrote down the names and doses of all her medications and a person in my life was able to tell me what they were for. Needless to say confrontations were served all around. I stopped staying at “home” when I was 16, spending as little time there as possible. Still being labeled the problem child, I moved out completely at 17.

I have gotten therapy ad nauseam. I asked that I be given every psychological test known to man to see was I anything like her. Would I turn out like her? Was there something wrong with me? Despite my many flaws and admitted quirks and dysfunctions, I AM SANE.

So I still may not always know who I am, but I AM NOT HER. Nor will I ever be. I am bitter. And yes I am damaged. But I am ME. Whoever that is.

And for all the people telling me I have to forgive. For the so called family who abandoned me and still to this day judge me, shun me, and blame me, instead of facing the reality of HER illness, I give you a ginormous mushroom print. FUCK YOU.

I am me. Someone you do not know.

The Scar On My Soul

Four years. Four years later. And still I struggle. Not every day. But enough.

The reminders that won’t let me forget.

Seeing my daughter doing the things my son should have been doing four years ago. Climbing, running, not needing to hold the walls to walk down the hallway as he did at the end.

The surgical scar on the back of my son’s neck echoed in the scar on my soul.

The checkups, though now yearly, renew my fears… what if

When does this end? When do I get closure?

When it’s been five years since the tumor was successfully removed? When my son gets to go to prom like the diagnosing neurologist essentially promised us? Or goes to college? Gets his first job? Gets married? Has kids of his own?

Do I get closure? Or is closure bullshit?

Yes, it does get easier. Yes, I’ve gone on with my life. But some days (most days?) I’m not convinced it’ll ever really be over, that the door on this chapter of my life will ever really close. Rather I feel that this chapter is just beginning and it’s a long one.

I try to console myself, thinking it’s okay to feel this way, that it never ends. I can be okay with that. Right?

And yet… And so… this is where I am left… my son is alive and well. Why can’t I let go of the past?

Why won’t it let go of me?

How Do I Make You Understand?

Sometimes, people on the outside have no idea how to help those with depression.

This is her story:

How do I make you see that being depressed is not something I have control over?  How do I make you see that when the darkness is creeping in, I feel alone and I need an anchor?

I can’t just “be happy”.  I can’t just change my negative thinking.  I can’t just change the fact that I feel like a failure.  I need a lifeline.

You are that person for me.  You are my rock, my oasis.  But that doesn’t mean that the darkness does not creep in.  It doesn’t mean the thoughts cease.

It does mean that I will cling harder to you while pushing you away.  And I hate that about me.  Because I love you.  Because I know you deserve better.  Because I know in the one year we’ve been together, I have come to trust you more than I have anyone in 16 years.  Because we’ve walked through fire together.

But my mind won’t let me see that enough.  My mind tells me, “He doesn’t love you.” “He will leave you.”  “You will be alone.” And instead of looking into your eyes and hearing you tell me you love me and planning our future together, I listen to the voices.  My mind isn’t trying to protect me.  My mind has gotten used to the negative thoughts and now thrives on them.

Unfortunately, the voices haven’t always came from my own head.  They’ve come from bad relationships.  Some that lasted only 10 months, one that lasted almost 6 years.  Six years of hell.  Six years that left me scarred.  Time may heal wounds, but the scars are still visible.  As the years have passed by, I have tackled one issue after another that I carry as baggage.  But I still have the depression.  I still have the anxiety.  I still have the fear.  And that’s when the darkness begins to creep in.  And the cycle begins anew….

I want to be a better person.  Not just for you.  Not just for my kids.  But for me.

But I need your help and your understanding that these walls are not about you, they’re about me.

A Letter To My Younger Self: It Will Be Okay

I wish I could write like our favorite Aunt Becky, but I can’t. My words will be misspelled, my commas will be out of place, and there will definitely be run on sentences, but I swear like a trucker so somehow I think I will fit right in.

So back story: BAD shit happened to me when I was a kid.

You know, my dad was an alcoholic, show me on the doll where the bad man touched you, which I never told my parents. My sister got pregnant when she was 14 and eventually my Mom could no longer deal with it all so I had to pick up the slack. That kind of bad shit.

There were days when I didn’t know if I would make it. Days that I wasn’t able to deal. I would burn myself or punch a wall just to feel… something. I made it through bruised but not broken.

I just wish I could tell the young girl that dealt with all of that what I know now.

I’ve been talking to a young friend who is going through so much in her life right now. She reminds me so much of my younger self. She, like me, puts up a strong front, but just beneath the surface you can see the hurt and self-doubt. When asked we will both say we are “fine.”

Every time she says it to me, my heart cracks just a little. See I know that when she says, “I’m fine” what she really means is “This hurts like hell! My heart is breaking. Somebody please just take away the pain.” I just want to give her hug and tell her it will all be okay. I won’t, mind you, because that would make me seem weak or soft or whatever my fucked-up mind thinks.

Still, through talking to her, I’ve been thinking, what would I tell my younger self?

So I wrote myself a letter today. Maybe it will help her or some other young girl who needs to know it WILL BE OK.

Dear Tonya,

I know it’s hard right now, but experience brings knowledge, adversity brings strength. None of that makes a damn bit of difference when you’re hurting but faith, faith gives you hope. The hope that there is something greater out there brings a small amount of peace even in the darkest times.

When you find love, it calms. Love doesn’t hurt; it heals, it comforts, it expands. Love gives. It should not take away.

If life seems to be spiraling out of control, find solace in the small things. Family, friends, music, words. These are your armor against all that will stand against you.

Remember that the lessons learned from the mistakes we make and the paths we choose make us who we are. Never regret them. To do so would mean you doubt yourself. Nothing and no one should make you doubt your worth.

Though it’s sometimes easier to forgive others than yourself, YOU ARE ONLY HUMAN.

Be as kind and love yourself as much as you do those others.

Stand tall without being cocky and be proud of who you become.

I know I am.


PS. If none of that shit works there is always vodka.

When The Treatment Is Worse Than The Disease

I have a dear friend who has Hepatitis C. He went through interferon treatment, which is considered the gold standard for hepatitis C treatment, last year. The side effects were severe but it didn’t kill his disease and he will undergo an experimental protocol in January.

His wife, an even dearer friend, lived through hell during his treatment and now she has to return.

All I know how to do for them is be there when it starts. I will to walk through hell with them. They would do the same for me.

Ironically, they will probably have to one day. My better half has tested positive for Hepatitis C. I am just grateful that his viral load is still low enough that the doctors recommend against the interferon treatment; instead they are waiting, watching.

It is bad enough that these two men, so full of life and benevolent mischief, have this disease that wants to kill them. Yet, to add insult to injury, all four of us are recovering addicts. You’d think we had walked through enough hell just surviving addiction, getting clean, and finding a new way to live.

I feel so powerless, so inadequate. I want to scream. I want to fucking punch something

Poison Extraction AKA Leukemia Part II

Part I Here

My memories of the time between when Mom was admitted and when she left for Houston are jumbled. I know with Mom gone, running the house largely fell to me. I would get me (age 8), my sister (age 3-4) and my Dad up in the mornings and make breakfast. I remember having burns on my thighs from wearing my night shirt while cooking bacon in the morning and the grease would pop and splatter me. I remember learning how to do laundry and having to have a step stool so I could climb on top of the washing machine so that I could reach the soap. I remember sitting on the sofa attempting to hand-sew a hole in my underwear closed.

Through out the summer we spent a lot of time with various family members and random people from our church who volunteered to look after my sister and I for a day. That was probably the hardest. Every house had different rules. One house I sat until I was near starved b/c I’d been taught it wasn’t polite to ask people for food. When the woman found out she was like “oh honey you just have to speak up or better yet go serve yourself!” Then the next house I got in trouble for trying to do just that. Some houses they’d tell me I could eat anything I wanted and others I was told that beggars can’t be choosers and I should eat ONLY what they offered me and eat every last bit.

Then there was the boredom. Some people had kids who would share their toys. Others did not – either the kids were grown or the kids wouldn’t share. Or they’d want to watch a movie I wasn’t interested in or what not. The sweetest woman, I have no idea what her name was or I’d write her a big fat thank you note all these years later, discovered I liked to draw and she bought me a BIG thick fat loony tunes coloring book and a box of 64 crayons. I swear that book saved my life with all those days of house hopping.

I also discovered reading. But mostly I discovered how to fake reading…. Nobody would tell me exactly what was up with my Mom. They made this big show of how Momma would do 6 weeks of chemo therapy (counted it off on the calendar with us and everything) and then she’d be all better and could come home. That was a lie. I don’t know if it was intentional or just misinformed but either way when the info changed they didn’t tell me directly.

And so I’d pretend to read a book and listen while Daddy talked on the phone. I even remember him saying “Oh nah, its okay, she’s reading a book. She’s not listening” and he would talk about chemotherapy and radiation and bone marrow transplants. I didn’t understand what those words were exactly but I caught the gist of it. Daddy seemed to underestimate my vocabulary and comprehension back then. Where as my Mom always just talked to me like I was an adult and I’d just have to stop her occasionally to have her define things.

It was funny, at one point they put me in class with one other little boy and some type of teacher there at the hospital where she tried to give us the “My Mommy has Cancer” after school special or some such thing. I was so excited to finally have a person to ask all my questions to. I immediately started asking about chemo etc and she about freaked. I think she would have put her hands over the ears of the other kid if she could.

As it was class was HASTILY broken up – me with one teacher where I asked all my questions and the little boy went with some other person to get the kiddie version.

Our days went something like this: we’d get dropped of with whoever was watching us that day, Dad would go to work, then he’d come and pick us up, we’d go visit Mom in the hospital. My sister and I would wear masks b/c the docs explained that we had cooties and would make Momma sick (oddly enough she never once got sick from my sister and I but she caught a dozen things from Dad). And then later in the evening we’d head back home and I’d lay across the foot of my Dad’s bed pretending to read Black Beauty while he talked on the phone.

In retrospect, Momma mostly looked good at the time. I remember she lost some weight and when the chemo got started a friend of hers who was a beautician came the hospital and gave her a hair cut. My Mom had had the 80′s big curly shoulder length hair and her friend cut it off to a ultra short pixie cut. They explained that this was better since the chemo would probably make her hair fall out and it wouldn’t make such a mess this way. I remember being shocked but liking it.

I missed being able to give my Momma kisses but at least we could scramble up into her bed and cuddle with her and get hugs. We’d bring her pictures we’d drawn to decorate her hospital room. And we always loved to see when other people would bring her balloons. She couldn’t have flowers so if somebody forgot and sent her them they’d hold them out at the nurses station and we’d take them home with us at the end of the night. I liked that part because I loved fresh flowers but I sure wished I could share them with Mommy.

Then they began to talk in earnest of transplants. Momma needed a donor and a hospital. At the time there were only 3 hospitals in the country that did the transplant – one in Tucson, one in Seattle and one in Houston. At the time we lived in Phoenix and so Daddy asked the doctor, “Well, Tucson is closest… whats the difference between the them?” The doctor replied that, “Well, right now, Tucson has about a 13% success rate, Seattle is running 20% and Houston is doing 50%”. My Dad stared at him for a minute and went “Ya know Houston sounds GREAT to me.”

I remember the search for a donor. They started by testing all of my Mom’s brothers. Adam and Sam went first and neither was a match. They’d wanted to avoid putting Uncle Mike through the stress because he had a heart condition, but he agreed to be tested. By this point, I’d caught on that if Mommy didn’t have a bone marrow transplant that it was going to be bad. I wanted them to test me. I didn’t care if it hurt. I was willing to do anything to save my Mommy.

Momma was dead set against my even being tested. She said it hurt too much and she didn’t want me to go through that. I was set and ready to be stubborn and fight long and hard for this if I had to but thankfully it turned out my Uncle Mike was a match.

So now we had a donor and a hospital there was just one more major roadblock: money. The insurance company was refusing to pay for treatment. There was some sort of government assistance available but they didn’t want to pay either and MD Anderson wouldn’t let us come unless they got a down payment that was either 30k or 3k I don’t remember. I was 8 at the time but I remember it was wayyyy more money than we had. My parents had always been on the verge of broke though they worked hard to provide for us but the medical bills quickly piled up and wiped out whatever was left of their finances.

And so, I don’t know who all organized it but they had a big benefit dinner to try to raise money for my Mom. A local grocery store donated steaks, family friends provided entertainment, and Kodak (my Dad was a professional photographer at the time) donated door prizes. I know the tickets were like 100 bucks each. We raised a ton of money with that dinner (I can’t remember exactly how much) but it was still far short (less than half if I recall) of what we needed.

Unbeknownst to me at the time, my father’s childhood best friend, an attorney, sent a letter to the hospital and the government and explained that if they continued to delay my mother’s treatment while they quibbled over the money and she died that we would sue them for everything that the mother of two small children was worth.

The day after the benefit dinner, we got word from the hospital that they’d let us come after all. We only needed to pay less than half the previous amount in advance. I don’t remember the numbers but I remember it was almost the exact amount we’d raised at the dinner the night before. It was a miracle.

A small army of sisters from church came to the house and packed up everything. My sister and I went to live with my grandparents while Mom and Dad went to Houston.

The day they left we went to the hospital early. Mom was in street clothes for the first time in months. They wheeled her in a wheel chair out of the hospital and to a waiting limo. I was so excited, I’d never been in a limo before. Daddy explained that taxis had too many cooties and they wanted all of us to be able to ride together so they’d gotten a limo. I remember my Mom and Dad piling into a little leer jet complete with a small medical team to monitor Mom through out the trip.

I hugged my Mother goodbye for what I was scared might be the last time. I had know idea if I would ever see her again. And then I stood next to my Grandma with her arms wrapped around me and I sobbed my little heart out as I watched the plane back up and take off.

Part III Here