Rage Against the Dying of the Light

My dad has cancer.  Yesterday I spent 13 hours finding out my dad has cancer, waiting while he had a biopsy tumor extraction, and recovered from surgery.  Trying to process everything yesterday while trying to be strong, have courage, be brave, be a duck.  Water off a duck’s back, floating on the tumultuous surface, I don’t know. Trying to deal with it. Waiting. Waiting. Praying. Hoping. Coping.

 

Of all the things I’ve ever worried about in my entire life… my dad getting cancer did not make the list.  I am caught flat footed.  It takes the wind from my sails.  I am wholly unprepared for this.

 

I don’t know what to do, what to think. My poetry brain has kicked in to try and cope.  No drinking, smoking, self harm, nonsense or shenanigans.  Healthy coping mechanisms.  Read. Write. Create poetry.  Meditate.  Count.  Breathe. Breathe.  Breathe.  Remind myself to breathe again. Keep breathing.  Make lists. Shove the feelings down deep.  No, try to feel.  Nope, too hard to feel.  Ok shove those feelings away.

Hands shaking, anxiety weighted in my chest.

 

Realize: He found out last Friday.  Told my mom Saturday night.  Mom told Husband Monday night.  I found out Tuesday morning.  Why am I the last person to find out?  Bad enough it’s happened.  Now the lies.  Betrayal.  As if dealing with the cancer was not bad enough now I deal with deceit as well.  What do  I do now?  How do I start to deal with all this?  How do I cope? What do I do now?

 

Will I ever escape the rage I feel inside?

After the Before

Author’s Note:  Let me preface this entire post with the knowledge that my mom is alive and well and cancer free.  (I hate it when awful stories get told only to find out after all the worrying for the characters that there is a happy ending after all.  I don’t mind those sorts of stories as long as I know they end happily, thus I’m sharing this ending.)  This blog post is a story I wrote my senior year of high school.  It is the only story I’ve ever written where I allowed myself to discuss my family’s battle with cancer. 

When I was about 2 my mom, 29 years old, was diagnosed with stage four breast cancer in one of her breasts and the lymph nodes under her arm.  The doctors told her to make peace with the world and that she would not live to see me graduate college, get married, or even start Kindergarten.  My mom is a fighter and she fought her way into the case studies for Tamoxifen (now a standard part of breast cancer treatment) and had chemotherapy, radiation, surgeries, and a mastectomy.  She had check ups twice a year for the next five years.  After five years she was pronounced cured.  She continued annual check ups at the cancer center.  After ten years she was pronounced really cured and at some point along the way her cancer was downgraded to a stage 3 (because she survived).  She continued yearly checkups because she had been in the case study.  At year eleven she was pronounced still cured.  Between year eleven and year twelve she didn’t notice but a lump the size of a pea grew under her armpit in one of her lymph nodes. 

At her yearly check up 12 years after she had first battled cancer, the cancer returned.  She was diagnosed with stage four breast cancer.  Once again the doctors told her to make peace with the world and that she would still not see me graduate high school, go off to college, or any of the things we had finally allowed ourselves to look forward to sharing together.  They said this cancer was tricky because it had been dormant for 12 years and then become very aggressive to have grown a lump so large in so short a time.  Again, my mom fought with all her strength.  She did more chemo and had more surgeries but this time there was no radiation because she had had the largest amount a person can have.  My freshman year of high school was her diagnosis.  My sophomore year of high school was her surgery.  My junior year of high school was her chemo.  My senior year of high school was the waiting and I graduated a semester early and went to community college- just in case. 

The doctors were wrong: she saw me off to formal dances, my first date, graduation, college, moving into a dorm, studying abroad, and recently getting married.  She is one of the success stories and I love sharing the hope that her double cure inspires.  But I don’t like talking about it, or thinking about it.  I still practice magical thinking… if I don’t talk about cancer or think about it then it won’t come back again…. Regardless of what will happen, right now she is happily living her life cancer free and my dad always tells her how she’s more lucky than cats who get nine lives and even more lucky than frogs who croak every night.  We all do the best we can to live life to the fullest because we know how short and precious it is.  Enough commentary. The story:

 

After the Before

***

After

 

My skin is very white.  When I get cold, my skin gets even whiter, except for the scars.  The scars are vivid, dark, and obvious.  They show up, slashing across my hand and wrist and itching in the cold.  They were not always there.  Before she got sick again, my hands were clean.  Now, they’re stained with my anger.  When we got back to our house, the sickness hovering over each of us, I went into my room, in the closet, and punched my hand through the wall.  Four times.  The plaster exploded around me and chunks of it stuck to the hair on my arm.  I broke two fingers and dislocated another.  I’m still not sure what exactly cut me, but something did.  I had three jagged tears above my wrist and my hand looked like I had lost a fight with a garbage disposal, or put it through a wall a couple of times, which I had.  My parents had to take me to the hospital.  Back to a hospital for more waiting.  The last place any of us wanted to go.  It is always cold in the waiting rooms of hospitals.

 

 ***

Before

It is always cold in the waiting rooms of hospitals.  We are waiting.  The walls are waiting, the uncomfortable chairs are waiting; the puzzle is waiting.  It has been the same puzzle for years.  We are all waiting.  The recycled air drifts around the families and patients too slowly to create a breeze.  The shifting of pain stiffened bodies; turning of outdated magazine pages, and the constant wheeze and coughs of people breathing the stale air are the sounds that fill the space between the floor and ceiling.  I think it is a requirement of working here to have noisy shoes.  Most of the men have tennis shoes that squeak at either the left or right toe.  The women have high heels that meticulously click-click-click their way into your brain behind your eyes.  The clicking is driving me mad.

I tap my foot in impatience.  I restlessly flip through an old cooking magazine without seeing the pictures, let alone the words.  My butt hurts from sitting for too long.  I wish my mom would be out soon so I could move around a little.  She doesn’t usually take so long.  I look at my dad to see if he’s as uncomfortable as I am.  He’s calmly flipping through a Time magazine from September (it’s December now) and has a scientific looking National Geographic waiting on the seat next to him.  I sigh as a squeaky-shoed-college-aged guy dressed in green scrubs hurries past.  He glances at me, keeps walking.  I throw my magazine on the table and stand up.  I restlessly move to the low rounded table with the magazines and grab some that look less painful then some others.

I hear the clicking of the woman who escorts patients to see the doctors.  She walks up, reads a name incorrectly off a metallic stern looking clipboard, walks a few clicks away and says the name again in the same nasal voice.  Some ancient looking, pain ridden patient is helped to their feet by a concerned family member.  They follow the clicking woman down the white hallways past cheerful portraits of wildflowers as the woman makes an effort to create conversation.  Not everything about this place is hopeless; don’t get me wrong.  Laughter sparks from hushed conversations among different people.

As a little child, I used to wander among the people waiting, offering to share my toys and asking if the patient had hair.  I would proudly tell them about my mom, who’s real hair is waiting until she gets better to come back, who has a very pretty collection of hats and a fake head to hold her pretend hair while she’s not wearing it.  I would tell them about how if I was good, I would get to borrow some hats.  I would smile and tell them about the secret stash of hot chocolate I could get from the nurses and offer to get them some.  Sometimes, I would bring water to my parents, and read a magazine with my dad while my mom was seeing the doctor.

There is hope to be found, if you look for it.  I didn’t notice as much while I grew up, as I do now.  Now, it seems much more important, not only to me, but to my family and to the families of other patients as well.  Without hope, there would be only sickness, and that is no way to live.

Besides hope, there is also tired and old and the waiting.  That was mostly what I noticed then.  Everyone who’s here, except for the workers, seems old.  I, at 17, am old.  I have been old since I started coming here with my family at 6 years of age.  The waiting has that effect on people.  As the minutes march into hours and the hours multiply, I begin to get nervous.  No, not nervous.  Anxious.

Anxiety.  It feels like it blasts from nowhere.  It tackles you.  Slam!  You’re floored.  There is a four hundred pound sumo wrestler sitting on your chest.  He’s sweating on you.  You can’t breathe.  You can’t move.  You’re stuck.  Your vision clouds with a black smoke of panic.  Your heart tries to beat its way out of your ribs.  Your hands tingle.  You’ve lost control.  Slam!

If that analogy does not work for you, imagine this one.  Picture a wicked May pole- something that can stand straight up with the support of tautly pulled strings.  Now, replace the May pole with a knife, a very sharp, very pointed knife with a very shiny, very black handle.  Attached to the handle are strings of barbed wire.  The knife is slammed into your breastbone hilt deep.  The barbed wire is injected into various places across your chest.  Now, as you become more anxious, the knife is twisted and pushed deeper into your chest.  The barbed wire is pulling parts of your chest towards your heart, while the knife is brutally twisted, making a tight circle in the bone and muscle.  Your world narrows to this pain.  There is no literal knife, so you can’t bleed.  Instead you sweat.  It’s as if you just washed your hands, but didn’t dry them and instead of water and soap, it’s salty sweat.  Your brain focuses only on the pain; it can’t control your vision, which quickly fades to black.  Rapidly you lose control of your hands.  They become a tingling sensation too far away to control.  This is anxiety.  This is what I feel.

This is what I feel now.  Now is Friday afternoon at 4:00 on December 16th.  I am down in the city with my parents sitting in a section of the hospital.  The cancer ward.  I’m not sure that “ward” is the correct word, but it fits.  I watch my mother’s doctor stride by followed by a flurry of college students who wish they were her and had her job and are as good as she is.  It is almost funny to watch because they almost always tower over her.  She is tiny.

Everything about her is tiny; she is, after all, only five feet one inch tall.  She clicks her pen in time with her heels as she enters the room.  Her starched white doctor’s jacket hangs precisely to mid-thigh.  The long sleeves are rolled to create cuffs revealing a very expensive looking shiny gold watch on her left wrist.  The color nicely matches the gold of her wedding band as it reflects light off the diamond of her engagement ring.  Her pressed khaki pants have matching creases running up the sides of her legs.

Her hair is short; it balances upon the tops of her ears and carefully lay over the top of her forehead and plays with the collar of the jacket at the base of her neck.  Each piece seems to be hair sprayed in place to create the least possible disturbance to the patient while still managing to look styled.  Her thin steel framed glasses perch on the bridge of her tiny pointed nose.  Behind them, her eyes are tough and by looking into them you can tell she’s spent many years watching patients die.  Despite the hardness in them, there is also kindness.  She isn’t a touchy feely doctor who will hold hands in a circle with her patients and sing Kuhm By Ya.  She is a good doctor though.  The best.  That is one of the things I like about her.

Maybe I also like her because when I was a child I could look her in the eye.  She seemed to be on my level despite her constant shuffling through color coded pages on her clipboard to check and cross reference her ideas and comments, even though she was right.  She was always right.  Even with all her knowledge, she always had time for a child and that made her special.  I respect her more then any other doctor I’ve met, believe me, I’ve met a few.

 

 ***

Somewhere in Between

 

I knew something was wrong as my dad and I walked into the confines of the stark white walled room.  Even before Is aw my mom, I could tell she’d been crying.  The doctor’s face was grim.  I didn’t know what grim meant before I’d seen that face.  Grim.  The eyes were forcibly opened by sheer will, they were gleaming with unshed tears; the lips were pressed firmly together, perhaps to keep from speaking the truth and making it real.  The color was gone from her face and her hands were shaking.  I had never seen her like that.  She had always been cheerful and relaxed during the family information time of the checkups; then again, my mom had been healthy for the last twelve years.  I had seen at once that everything was wrong.  My anxiety tackled me again but this time I had to keep it in check because to be anxious was to admit something was wrong.  I had kept trying to tell myself everything was fine, even though I knew it wasn’t.  My whole world was collapsing.

Looking back I don’t remember the words.  The doctor drew an elaborate complicated drawing on the sanitary paper covering the examining table that we took home and explained to the relatives and friends while they tried not to sob.  I remember I knew everything was wrong.  The doctor’s eyes were crying, but she was not allowed to cry.  My dad became stoic and I could tell he was broken, but for my mom and me, and for himself, he had to remain strong.  I felt like my entire life had been in a shoebox and suddenly, for no reason I can understand, someone had taken the box, violently shaken it, and had tossed the contents out into a stream of whirling chaos.

The ceiling vaulted away from me, the walls leaned in to take its place.  Everything shrunk and expanded.  Reality was far away.  It was outside of us, outside the room, outside of the cancer ward, outside of the hospital.  Chaos remained.  Chaos with the name of cancer.

As we were leaving, the doctor walked us out.  My mom went to wait outside while my dad got the parking slip endorsed.  The doctor was talking with him.  As my dad started to leave I couldn’t move.  I had to hear it from her.  I had to understand.  I needed her to tell me it wasn’t real.

“So… so does this mean my mom’s cancer is back,” I asked.  I tried to look her in the eye but I couldn’t see through tears I refused to shed.

“Yes, I’m sorry.  It does.”

 

“When” We Children, Not “If” We Will Have Children

I don’t like going to the doctor.  In fact, I’m pretty terrified of going to the doctor.  I hate needles and hospitals and doctor offices.  Since I hardly ever go to the doctor, when I do go it’s because I’m really sick.  Consequently, the doctor always tells me I’m really sick.  So then I don’t like going to the doctor because they always tell me I’m sick… I’m terrified that I am going to get cancer because my mom had cancer and I’ve just always thought that I would get it too. I do not have the most healthy way of looking at doctors or getting sick but it is something I have been working on improving.  My husband knew about my loathing of all things medical before we got married.  After we tied the knot we sat down and I really explained to him that I was terrified of getting cancer, rational or not it has been a fear that has governed every medical interaction I have had since I was 16 at least…  He pointed out that not all cancer is hereditary and that I have lived a very different lifestyle then my mom.  Also, no one else in my family has cancer so the situation might not have the odds I’ve always feared.  After that talk I realized that whether I end up getting cancer or not is actually not the main issue.  The main issue is whether I am going to take care of myself or not.  I want to be a strong, healthy partner just as I expect my husband to be a strong, healthy partner.  That means we both needed to reevaluate our feelings about doctors.

I started with the dentist.  I’ve had a cracked tooth (rear molar) for a couple of years and have never gone to the dentist to get it fixed.  I’ve literally just chewed on the other side of my mouth.  For years.  So I scheduled myself a dentist appointment and even showed up.  I found the dentist by doing lots of online research.  I found a place that specializes in “gentle dentistry” aka people with dental phobias or who have really sensitive teeth.  After finding that place I compared online reviews with lots of other places who specialized in the same thing.  I found the one that was ranked the highest and made an appointment.  It ended up being really great!  The dentist and dental assistants, even the lady at the front desk, all listened to me and explained things when I told them if I knew what was coming I wouldn’t jump.  It was a really positive experience.  That turned out to be good because I’ve seen a lot of them since then and I will continue to do so.  When you don’t go to the dentist for 5 years or so except for that one root canal you couldn’t avoid… your teeth will probably need some work.  My cracked tooth needed a root canal.  I knew that going in.  Turns out the tooth cracked because of the way my teeth connect and I also need another root canal on the same tooth on the other side of my mouth!  That one doesn’t look cracked but actually is down between the teeth.  Oh good… I finally decide to take care of business and now I need $4400 dollars in dental work.  My husband still says it was the right choice.  I’m not so sure.  Meanwhile, I’ve completed the one root canal on the cracked tooth.  It was my third and it was the best root canal I’ve experienced! When my husband gets a job I will schedule the other one.  Right now we just can’t afford it.

So I dealt with my teeth.  The next step is going to a regular physical check up.  I don’t feel quite up for that so I scheduled a lady doctor appointment.  I was only marginally less terrified of this doctor visit then of a normal physical.  I have only seen an OBGYN once and that was eight years ago.  I conducted research to find the best doctor covered by my insurance.  Then I needed to decide if I wanted a doctor that was just a GYN or one that was also an OB.  I decided on the OB because if we decide to have kids and I like the doctor then I don’t want to have to get a new one.  So, I went to that appointment today.  It was not nearly as awful as I was afraid.  I cried twice when I asked the Big Questions that have scared me for years:

1) Do I have the breast cancer gene?

2) Can I have children?

These questions have plagued me for years and I have been too scared of the answers to ever ask them.  The good news is that I can have children! The other good news is that it seems unlikely that I have the breast cancer gene because of our family history.  The bad news is that to really be sure I will need to ask my mom to get a genetic screening and then get a screening myself for comparison.  That doesn’t seem likely because of her own relationship with doctors.  The other questions I had the doctor answered as well.  In fact she took the time to go through each question on my list I brought and patiently answered everything.  In my experience doctors seem more apt to prescribe a pill, let the pharmacist go over it with you, and move on then they are to sit down and talk with you about what’s going on and what to expect.  Key take away from my visit:

Condoms are only 85% effective!

WTF?!?!?!?!  I told the doctor that I thought they were 99% effective and she smiled and asked if I liked the show Friends and learned that from Ross and Rachel’s experience.  (I DID! AND I NEVER KNEW THAT FRIENDS WAS WHERE I HAD GOTTEN MY CERTAINTY THAT CONDOMS WERE 99% EFFECTIVE!!!!) So, turns out we’re REALLY lucky that we haven’t had a pregnancy “scare” because, you know, we use condoms.  Speaking of babies…

My husband almost caused me to crash my car when we were driving back from our honeymoon last November because he said he could picture us having kids “next year.”  For the record, that “next year” is five months away!  With that comment he had moved from how we had been talking about kids: “someday, maybe if we have kids” to the concrete near future certainty about kids: “I can see us making a baby at this time next year.” That was a big startling revelation in our relationship and we have been having an ongoing conversation about kids since then.  It’s like suddenly with that one conversation he gave me Baby Fever!  I had never been partial to babies, not that interested, babies were still hypothetical in my future.  Suddenly I see babies and I’m like “AAAAAWWWWWWWWWW! LOOK AT THE WIDDLE TOES!” It’s been a struggle to keep my anxiety and fear at bay because they are so wrapped up in my thoughts about having kids.

Since I’ve always believed I would get cancer, I haven’t wanted to have any children because I don’t want to put them through what I had to go through and I don’t want to put my husband through what my dad had to go through.  Also I’m terrified about how the world is a dark and scary place and how can I bring an innocent child into that?  And what about if the child has a birth defect or a disability or grows up to become a serial killer?!?!?!  And what if I go crazy and then everyone has to deal with crazy me?  And what if something bad happens?  Or what if the baby gets cancer?

I’ve been carrying around all these worries and what ifs for years and I’ve never let myself really consider having a child because all these dark thought were between me and the thought of me having kids being possible.  My husband has dutifully talked through all these fears and more with me and even brought up some of his own… what if our parents try to move in with us to “help,” what if our puppy doesn’t like the baby, what if we lose our jobs and have a baby, what if we want to travel or move across the country?  So we talked about those things as well… and we’ve been talking about these things for the past 7 months.  Finally today I let all the fear and anxiety out at the doctor’s office and shared them with the doctor.  She explained what she could and then patted my hand and told me “you can’t live in the world of what if.  You can’t live in a world governed by fear.  You’ve had some bad things happen in your life.  Some really sad things you’ve had to deal with.  You could use some joy in your life.  Babies bring lots of joy.  It’s ok.  You are a healthy, young, responsible adult in a healthy relationship: go make babies.” And then we smiled at each other.  And I felt this dark creeping cloud that’s been hovering for years just raise up off me while I can still feel it hovering, waiting for me to descend into the dark pit of worries and what ifs, for the rest of today I’ve just been smiling.  I was waiting to make a decision about “the whole baby thing” until I had a sign from the universe.  I don’t know how much more clear the universe can be then having a doctor tell me to “walk thirty minutes a day, take a multivitamin, and make babies.”

I talked with my husband as soon as I got home and told him everything.  We both just smiled at each other and decided: it’s time to invite more joy into our lives and stop letting worries and fear make our decisions for us.  We’ve decided we are going to have a child and now it’s a matter of when, not if.

I am Strong Enough to Hold How I Feel

I can’t keep avoiding my problems and distracting myself from them.  I need to start actually dealing with them.  My cousin and Maid of awesome had a mental/nervous breakdown.  She started crying on Saturday and couldn’t stop.  Monday, they (Cousin and her boyfriend) took her to the behavioral health center and checked her in.  She is still there.  She will be there until Tuesday.  She has anxiety and PTSD and depression.  I’m so glad she is getting the help she needs!!! I’m proud that she was strong enough to get help.  She has asked me to help her too.  I went and visited her yesterday during visiting hours.  Bright-side of being unemployed: I can be there for my cousin. Today I went to the family group counseling session with her and I will go back for visiting hours this evening.  I will do the same thing tomorrow. 

I feel so much about this situation.  SO MANY EMOTIONS!  I’m scared and angry and nervous and confused.  I want to be there for her but I HATE places like that!  I hate seeing people dealing with addition because my mom isn’t dealing with hers.  I’m scared that when I’m in a place like that they’re going to look at me and see how broken I feel sometimes and think I need to go in myself!  I’m afraid as she gets better it will force me to deal with my own issues. 

What if I’m really not strong enough for my life?  What if I’m not strong enough?

People always tell me I’m brave, and have courage, and how strong I am.  I don’t feel that way about myself.  How is it strong to be near someone going through issues? I ugess it is because so many people abandon others in their times of need.  I just don’t know how they do it.  I am uncomfortable going to these events with my cousin, but she needs me.  It doesn’t matter how I feel because it will help her if I’m there, so it’s just something I have to do.  I bought and wrote in 11 greeting cards for her yesterday.  Today I bought her lotion and chapstick.  tonight I am bringing her tweezers and gum.  I love her and want to help her rediscover joy again.  I’ve so recently accepted joy back into my life I am going to cling to it. 

I keep turning my face into the sunshine and lighting my candles hoping to burn away the darkness.

 

Alzheimer’s and Dementia

My mom met with the assisted living car facility today about my grandparents.  I was too nervous to call and see how it went.  It is a terrible situation and I grieve for everyone involved, even myself. My grandparents both have Alzheimer’s and dementia.  What is unusual is that they share the same delusions though.  They literally are in their own world.  Since my cousin has gone away to boarding school my grandparents and my parents have reconnected.  It quickly became obvious that all was not well.  My grandparents…. it’s just such a mess and I think only people who have experienced a loved one go through the trials of Alzheimer’s and dementia can understand how vulnerable they are now.  The worst part is that I miss them so much because even when we are together, they are not the same grandparents I used to know.  Sometimes they don’t even remember who I am.  I wish there was more I could do to help.  I just love them.  My parents are doing their best to help but they live 45 minutes away in another city.  They keep driving down to help twice a week but the rest of the week is consumed with worry about them.  The assisted living facility is only a block from my parent’s house and is super nice.  I used to volunteer there when I was in high school.  I hate the thought of them going to live somewhere like that because they’ve always been so independent… but I hate the thought of them alone in their big house more because at least in this place they will be safe and will have positive social interaction with people who won’t try to steal everything they have.

I pray for my parents and grandparents.  I hope that whatever happens the family will embrace my mom with love and support instead of blame, anger, negativity, etc.  I hope they disprove my fears and expectations.  People are SO awful!  Especially family!  I feel so helpless.  I just send positive thoughts and prayers their way and hope it is enough.  Still no job update.  Running out of money still.  I need a job before May 1st so I need to get an offer in the next couple weeks.  I will keep praying for the best and trying to brace for the worst.

 

Anxious Reality

I can’t sleep because I’m so anxious.  Things are not bright at the moment.  I have slept less than seven hours the last two nights combined because I’ve been so anxious.  Things that are bothering me/I’m anxious about include:

My dad’s health

My mom’s health

My parent’s relationship

Boyfriend

The Babies (Olddog and YoungDog)

My job

My health

My living situation

My car

Money

MONEY

So, there are other worries also, but these are the ones with resounding echos and repeats in my head.  I am writing them now to get them out of my head so I can try to sleep and let the echos bounce within the pages of my journal.

(Author’s Note: Sadly, I still worry about many of these things even though it’s been 3 years…  I dithered about whether to include this post or not on my blog because it’s very personal and it includes things I don’t like to discuss with people.  I finally decided to include it because I want this blog to be a place where I can be myself and if people in the world see that, even the dark parts, then that needs to be ok.  Maybe someone else with anxiety induced insomnia will stumble across this post and realize they are not alone and it might help them.  I don’t know because I sat down to enter this and read through it and got all anxious myself so hopefully it doesn’t make someone else’s anxiety worse!  I can’t worry about other people’s feelings right now.  It’s time for me to be selfish.  This blog is about me and my feelings.  I try to find the magic in the world because a candle loses nothing by lighting other candles.  I hope that if I go through life as a candle helping bring light to other people that maybe it will burn some of the darkness out of me where it hides because I try not to show it to other people.  I don’t want to add more darkness to the world.  I want to add light.  That’s why this post is hard to write and why I’m stalling by doing this Author’s Note… *sigh* No more excuses.  Here is a glimpse of the shadows flickering behind my light.)

My dad’s health:  My dad has back/spine/neck damage/problems.  Disks 3&4, 4&5, 5&6, 6&7 all have problems.  He was a landscaper his whole life and worked incredibly hard physically (and in general).  There are a few different causes but the terrifying reality is his severe pain and his inability to work like he has for his whole life.  He’s so hurt he can’t even really play XBox anymore.  That really sucks because that used to be his way of zoning out from the pain and giving himself a break.  He needs back surgery on his spine.  The kind where they go in through his throat and fuse his bones together with a metal plate.  He could have had the surgery 5 years ago and so it was that bad then but now its 5 years worse!  He’s scared.  He hasn’t told me that in as many words but I can tell.  He’s gone to a physical therapist and wants another option besides surgery.  There’s not really another option.  He’s scared for his quality of life as he gets older.  I’m scared for him too.

My parent’s relationship: I think both my parents are really depressed.  I worry that they might get a divorce even though they are getting along much better than they used to.  My dad’s unemployment is about to run out and my mom doesn’t make enough money herself to cover all the bills.  On top of that they have medical bills, 2 dogs, and no end in sight.  My dad really can’t work.  Between cutting out the hard or not at all physical labor and having to pass a drug test (he uses pot medicinally to help with his spine pain), things are looking quite grim indeed.

My mom’s health: I think my mom pretty much hates her job.  The nepotism at the library is so over the top I don’t know how she deals with it.  It infuriates me to hear some of the stories about her work.  I hear “library” and think “how awesome!  I’d love to work there!” but then I hear about what it’s really like and yeah it has really awesome elements but on the other hand people insist on doing things the same way they’ve always done them, just because they’ve always done them that way.  That’s not logic, that’s being stubborn and I don’t understand why people are so resistant to change if it’s helpful change.

Cousin: My awful cousin is FINALLY gone to boarding school so he is out of my grandparent’s home.  They seem to be going/have gone BAT SHIT CRAZY though.  When did that happen?  How did I miss it?  Oh yeah, I missed it because they’ve chosen that awful cousin over literally the rest of the family and pushed everyone away.  They are so hurtful and supportive and cruel to my family now and it breaks my heart.  They used to be so loving and supportive and held all sorts of family events and their home was a place of love and celebration.  Yeah, sometimes grandpa would get drunk and yell at everyone but once we got that out of the way the party could continue… “Poor AwfulCousin” is all they care about now.  They did not even get Christmas presents for anyone else.

My parent’s other property in NeighboringTown to HomeTown: Things keep getting worse there.  I still don’t really know just how screwed we are but the more I learn, the scarier it gets.  Every time we think we have good renters the jerks just come and steal them.  Literally they wait until a couple of months before their lease is up and go up to the front door and tell the renters that we are raising the rent (which is a LIE) and who knows what else.  Then they tell them that their property is just like this one and oh hey, is even cheaper a month (because it IS since the used the floor plans that my parents developed and bought the corner lot adjacent to this one that my parents were going to buy the following month and then built the same set up we have and instead of finding their own renters they keep stealing ours and undercutting the rent which they can afford to do because they can afford to do that.)  I really hate people.  I mean, who does that?  What sort of lifelong friend stabs you in the back over a piece of land in a town that looks like it will have good property values in a couple years but right now is pretty worthless and then continues to twist the knife at every opportunity?  I just cannot wrap my head around it!

I don’t have a safe/happy/good reality at the moment and even fiction stories are not helping me block it all out.

Today my mom told me they are considering bankruptcy. The unfairness of IT ALL strikes me and makes my throat ache.  My parents have lasted through cancer, cancer again, a kid (me), a kid going through college (me again), a home business that was on and off again, addictions, people screwing them over, so many obstacles and trying to invest and then cruel and deceitful people finally break everything.  It’s SO unfair!  I know the world is unfair but I don’t understand why bad things always seem to happen.  And why do they always happen at the same time too?  I’m almost paralyzed with fear for was.  What can I do to help?  What will happen to us all?

Pets: OldDog is so old.  He tired to jump onto my bed last time I was home visiting and missed.  That has never happened before.  I picked him up and held him and cried and cried while he licked my arm trying to comfort me.  He can’t help where he goes to the bathroom anymore.  It’s gross but he’s old and can’t help it and we still love him.  I don’t think he’s in pain but I’m terrified he is and I’m just not around enough to really know.  The time is approaching when we are going to have to decide if he needs to go to sleep.  I’m unsure and terrified of what will happen.  He’s been my baby since I was in third grade.  I already miss him so much because I don’t live with him.  I sometimes call the house when I know my parents are gone and leave a voicemail to the dogs telling them what good puppies they are and asking if they want a treat.  When my parents get home the dogs are all excited and barking and jumping around and they know its time to give them cookies cuz I left them a happy voicemail.  YoungDog is so dumb and has learned such bad habits from OldDog that I worry about what will happen to her.  She’s really sweet but such a spazz!

Boyfriend: Things with Boyfriend are alright.  We still love each other madly and are planning on our future together.  I can see now and I don’t know how to move forward.  I don’t know how to get to where I want to be.  There are no sure or right answers to these tough questions.  He has his stupid 6 month lease that he signed since I moved up here, his job that he seems to love (or at least really enjoy) that he is amazing at, and a car, and a life in CollegeTown.

Living situation: I’m in BigCity living with a grandma who’s never there, a goat, a cat, and two dogs that eat better then I do.  I work 10-12 hours a day at $10 an hour.  I can’t afford to move out of this house.  I don’t know if I even want to move out if I can’t move in with Boyfriend.  I can’t afford to live because I make so little money.  I spend a ridiculous amount of money on gas EVERY week because this place is so far away. It’s really super scary trying to make it on my own.  And I am because my parents are not really in a position to help me.  They say they can help if I need it but how can I believe them when they say that but then also tell me about all the financial worries they’re facing?  How do I go on with my family in so much trouble?  How can I just live down here and selfishly try to do what I want when maybe if I moved home and got a job it could help them out? What do I do if they are going to file bankruptcy?  Is it too late to do anything anyway?

Job: My job is SUPER boring and I HATE it!  I literally loathe it. I’m already bitter and it hasn’t even been four whole months yet.  Cycle Counts are interesting but I just need more money.  The Tech test is $130 and getting that much money seems hard to me! That’s pretty surprising because I thought it would be easier by far to move to that position.  The test itself is a lot of math and memorizing abbreviations.  I may get hosed if I do spend the money and then can’t pass the stupid test.

Car: My car is old and is my only mode of transportation.  I live too far from work in BigCity to take a bus or even a series of buses to get to work.  Also with my strange hours the buses don’t even run that early in the morning or that late at night if I was to switch shifts to night shift.  Troubling. It’s all troubling.

My health: My allergies are INSANE!  I have an allergy appointment on Wednesday morning with an allergist in BigCity instead of the one I’ve tried to still see in CollegeTown.  I don’t know the company name, address, or Doctor name at the moment.  I hope it helps me be able to breathe.  I don’t like being reminded of my serious problems with the most basic part of being alive (breathing)!

I took two Benadryl before I started writing this and am finally falling asleep!!!! FINALLY  I have friends but it worries me too.  I wonder about the future and can see where I want us all to be in that future but I don’t know how to make it happen. I wish magic was real so there would be an easier answer or at least more options.  I’ll write more later because I’m going to go sleep like a rock.

Negative Self Perception

Am I still the same person if I’m different when I can’t breathe?  I haven’t been able to breathe for five years… How can I still be my idea of who I am, complete with all my new and past experiences if I don’t take into account how I act and actually interact with the world?  I think of myself as active and outgoing but I don’t do much that’s active. In fact, I’m so inactive I thought being active at my job would case me to lose weight and get into better shape (like I used to be when I could breathe).  It doesn’t seem to have worked.  I’m still overweight and I still can’t breathe.  I have about 6 work t-shirts and only one pair of jeans.  I’m not how I think of myself.  I wonder now if I’m overweight, scruffy, and boring.  I don’t think so but it’s a worrisome and lingering thought.  I guess I need to figure out how to change… either my perceptions or my reality need to change because things are not how I want them to be.  Uh-oh…

(Author’s Note:  The not being able to breathe references my severe allergies to CollegeTown and the surrounding area.  Growing up I didn’t have any allergies but when I went to college I ended up with phemonia twice, seasonal asthma, and bronchitis 4-6 times a year.  I had weekly allergy shots, had to take 3 daily allergy medications, and carry around an inhaler.  I was taking all those medications and still getting that sick.  It really sucked.  There is literally nothing scarier then not being able to breathe.  When you can’t breathe you can’t even say that you can’t breathe.  Also the whole lack of enough oxygen thing makes me incredibly tired ALL THE TIME.  It’s hard to be social and be physically active when you wheeze walking across a room… The Bright-Side:  In BigCity I only take one daily allergy medicine and only get Bronchitus once or twice a year!  The climate is very similar but I think there is too much concrete for the allergens to thrive like they do in CollegeTown.)

 

Poem Commentary

Author’s Note about Chose to Dwell in Smiles:

I wrote this poem on the anniversary of the day my mom’s cancer re-occurrence was diagnosed.  I was and am so tired of living with the fear that her cancer would reoccur again.  It is exhausting to carry so much fear around all the time.  I try to focus on the positive most of the time.  I read happy books, I watch happy shows and movies, and I hang out with people who remind me to dwell in smiles.  My mom is still doing great and her cancer is in remission.  In fact, she is considered cured again. 

She was first diagnosed with stage 4 breast cancer when she was 29 years old. I was two years old.  The doctors told her to make her piece with the world and that she had maybe three months to live.  She changed doctors and fought and fought and was in case studies for Tamoxifen and fought some more.  She was pronounced cured at 5 years and still clear and going strong 10 years later.  12 years after she was first diagnosed, her cancer reoccurred.  I was a freshmen in high school.  The doctors told her she would not live to see me graduate.  She fought the cancer off again and again she won.  I graduated early (just in case) and she came to my high school graduation and watched me walk across the stage.  She also came to my college graduation 4 years later. 

Author’s note within an Author’s Note: This year (2013) she will celebrate her 59th birthday.

Doctors don’t always know everything.  Sometimes miracles happen.  Sometimes bad things happen to good people for no reason and there’s nothing you can do about it.  Sometimes you fight with everything you have and you still lose.  Sometimes though, sometimes you fight with everything you have and it’s enough and you win, and you live.  Some battles are worth fighting. 

This is often my internal monologue: “I am strong enough to hold how I feel.  Emotions are fluid and always changing.  This too will pass.  I am strong enough to hold how I feel.

I Am Poem

I am long dark hair and sarcasm

I wonder what it’s like to be wanted for the way I walk

I hear sunlight sneaking through dust particles in the late afternoon

I see snow caressing the gentle pine, to protect it from the cold

I want to be struck by lightning, so I can write about the experience

I am long dark hair and sarcasm

 

I pretend to feel confident

I feel like a beat up 1985 Chevy truck driven by a drunk driver

I touch the sound of a tree falling in the forest

I worry that life is a dream and death the reality

I cry when no one is watching and no one seems to care

I am long dark hair and sarcasm

 

I understand what it feels like to cling to the edge of losing everything

I say attitude is how other people interpret what you do

I dream that the sky is blue flowers floating in a sea of tears

I try to count the leaves of aspen trees three miles away

I hope that people don’t perceive me as cruel

I am long dark hair and sarcasm.