Truth and lies – just the wanderings of my mind

You ever wonder why it is so hard for people to be honest?  Honest with themselves, honest with others…just all around honest?  We lie through half-truths, through ‘little white lies’, we tell ourselves it is for the better, but is it?  Does it ever truly make things better?

Why do we lie to those we love, those we hate, those we don’t even know?  Why do boys and girls (or girls and girls, boys and boys, whatever) who like each other lie to each other?  Why do we lie about our feelings?  Why do we lead people on?  Why do we pretend that people mean more or less to us than they do?  Why?

What are we trying to achieve through these types of lies?  Why do we lead people on, saying we don’t know when we do?  Saying we don’t care when we do?  Saying we do care when we don’t? Do we think that it’s better this way…and if so for who?  For us?  For them?  Who is it really better for? 

I think no one.  I think we lie because we are scared.  We lie because we are unsure.  We lie to not damage a friendship…because that always works so well <sarcasm>.  We lie to not loose someone.  We lie cause it’s ‘easier’…but is it?  Lies come out.  The truth wins and in the case of lies the truth may win but everyone else loses.  Friendships are damaged…friendships are lost.  Relationships are ruined…or damned from the beginning because they started with a lie.   

It’s hard but wouldn’t it just be better to be honest to say hey I like you or not.  To say we’re confused.  To say yup I messed up and I’m sorry.  To say let’s move on, to not drag something that’s broken on because you don’t want to let go, because you don’t want to be truthful.

How do we know when somethings a lie?  How do we know when it’s a lie versus us just miss reading the situation?  How do we know the truth?  What is the truth?  They say that two people witnessing the same scenario will see it differently…does that mean one is lying and one is being honest?  How do we know what is real?  What is true?  What makes a lie a lie?  What makes the truth the truth? 

So many questions in this world and so few answers.  So few absolutes. 

My life with Meniere’s: How things have changed

This is another one of those things I’ve contemplated writing a couple of times over the past few years.  Started, stopped, and deleted more times than I can count.  It’s another one of those things that the fear of reactions and stigma keeps me from doing.

Many of the people in my life know that I have Meniere’s disease; many do not for fear of misunderstanding of what it means.  When you tell people you struggle with balance they either laugh and make a crack about being drunk or worry about how safe you are doing what you love.  They also look at me and out come the ‘you don’t look sick’ thoughts, when you say you have a chronic illness they expect you not to be able to do things.  I work a full schedule, heck I work around 50 hours a week, I volunteer, and recently returned to school.  7 years ago I could barely get out of bed.  I thought my world, my dreams, my ‘everything’ was over.  I was 29 years old and I thought I would never live a ‘normal’ life again.

As I’ve watched my Facebook memories be inundated with the beginning of my journey with Meniere’s I’ve marveled at how much things have changed.

At this time seven years ago I didn’t know what was wrong with me other than yet another ear infection that seemed to be causing sever vertigo and dizziness and that I was quickly losing my hearing in my left ear.   If it hadn’t been for the hearing loss I would have been sent home with a ‘yup, being dizzy sucks but it’ll get better. It may take weeks though’.  I was basically told this but when I commented again on the feeling that I couldn’t hear anything out of my left ear hearing test happened, one after another as my hearing got worse and worse, going from an 8% loss to an 80% loss in a couple weeks.  A loss that has never returned, it occasionally fluctuates to slightly better and slightly worse but has not and will not return.  I spent the next few months of my life getting tests.  The original thought was a tumor…when my MRI and CT scans were all normal we talked with my doctor.  The first words out of my families mouth was “is this Meniere’s, Grandma has Meniere’s”.  The problem with Meniere’s is it’s usually a diagnosis of elimination.  They test for EVERYTHING else first, but luckily these words led to testing and a diagnosis, a diagnosis that takes most years only took me months.

Of course knowing what was wrong didn’t make it all better.  It meant medications to help manage but it also meant constant light dizziness and at least weekly ‘teacup moments’ as I began to internal refer to the days that felt like a teacup ride.  There’s nothing like nearly falling over cause the room is spinning so fast around you as you just stand there.  I’ll always remember my bosses kindness at first that turned to frustration, my co-workers disgust as I have to leave early, again, clinging to my mom and just praying to get to the car, my room, and my bed…praying that I don’t puke or pass out in the process.  Some of the people I worked with were amazing, compassionate and caring; most thought I was faking it because in general I didn’t look sick or they didn’t understand the idea of chronic illness.  I fought so hard to hide it, for normalcy, but also Meniere’s doesn’t always look like clinging to someone desperately as I pray the room will stop spinning.  Often it looks like a steadying hand on a wall, a slower movement, stiffer body as I strive to move my head as little as possible not wanting to wake the lightly sleeping dragon that can destroy the world.  This was my life seven years ago and for many years after.

I woke every morning terrified about what would happen when I sat up, when I opened my eyes.  I lived in fear of the dizziness and in utter terror of the vertigo (there are totally different things!)  I was positive that my ability to work with kids was over, that my life was over, and that at 29 I was done.  I spent a lot of time curled up in my bed waiting for the world to stop spinning, laying in the dark in tears as my life passed me by.  But things got better.  Meds that worked were figured out, I figured out what movements were ok and which would power up the tilt-a-whirl.  You will never see me spinning around, or lying on the ground looking up at the sky, you won’t find me looking up period, not looking down from a height.  I close my eyes a lot when watching movies, especially in the theatre, now a days as the popular rapid movements are my undoing.  Flashing lights, especially strobes, are EVIL!  I know these things and I avoid them but unlike seven years ago they don’t send me into an immediate tail spin anymore.

The thing is I still have a chronic illness, there are still days where I wake up and the room is spinning around me.  I take appropriate meds and when I can curl up until it goes away.  I occasionally have to back out on extra activities but have not had it affect my ability to go to work, to do my job in YEARS now.  There are those times when the people who know me and have gone through this journey with me watch as my hand slides along the wall and they check in but usually I’m ok, I’m struggling for a straight line but that’s unusually all.  All of this has made me think about what it means to have a chronic illness.  I will forever have Meniere’s, unless a miracle cure is developed but since they still aren’t 100% sure what causes it I don’t see this happening in my life time, I will forever have off days, and will forever have things that I can’t do, or at least have to think about like when I went on the rides at Disney with my niece and nephew or showed a little girl how to do a pirouette.  It will always be a part of my life but it won’t end my life.  It won’t take away my ability to do what I love, and what I do well.  I refuse to live in fear of the bad days; I refuse to live in fear of what might happen.  I may have Meniere’s but I am fighting for it not to have me.

PS: As so often happens this went in a different direction than originally planned.  This whole things came to mind again of the FB memories but also because of another blog I read about being Chronically ill entitled “Too functional to be Chronically ill but too sick to be healthy”.  It made me start thinking about my own illness and how much things have changed over the past few years.  I’m not 100% healthy and there are things that I am limited on but at the same time I’m doing pretty stinkin’ awesome most days.  I have jobs that I love and am living my life but I also have days when I need a down day.  I need a day where I’m not expected to do anything and times when I need to remind myself to not overdue it.

Depression and the voices from my past

I have spent a lot of time over the past couple of years considering writing this and due to the realities of our world I don’t. I feel the fear that comes with the stigmatization of mental health. I started fighting that fear a few years ago. I finally accepted my own anxiety issues and began admitting them not only to the outside world but more importantly to myself.
You see for a large part of my life as I was growing up my dad tried to get me to admit and seek help. This always caused a battle between us, as my words often offended him as his offended and scared me. He’d label me as depressed, or manic, or he didn’t know what but he saw the struggles. He saw his child who hid from people in a large setting, saw his child who was up and down emotionally, who had a temper that was explosive and got her in trouble. I don’t think he saw the child who was just hurting because of the words she heard from the people in her world.
He didn’t see the child who was effected negatively by always being the new kid. By being the one who didn’t fit in and who was teased mercilessly by the other kids. Whose own friends occasionally got in on the action because that’s the life of a teenager. 
As I was growing I heard, accepted, and internalized the wicked and hurtful things that were said to and about me. Those voices, those words became my internal voice. Nearly a two decade after those evil words have mostly stopped I still hear them. I hear them in every unanswered text or message. I hear them in the seemingly ignored posts. I hear them when spending time with friends…thinking thinking thinking, second guessing everything I say and do. Wondering if they really want me around or if they’re just pitying me.
Even when being told that I am amazing, that I am loved…I hear the voices telling me this can’t be true. That those saying that just want something from me. A part knows that’s not true but the voices from the past can be so much louder than the ones in the present. 
Those voice cause me to be anxious in a crowd. They cause me to be anxious whenever doing anything new. They make me afraid of new people, and old friends, afraid of what they are truly thinking.
They cause issues of depression. They cause me to think that I am worthless and unloved. They cause me to feel like everyone would be better off with out me (a piece of my brain always kicks in right here screaming that the voices lie, it’s quiet a battle between the heart and the head). When I make mistakes it’s like I’ve ruined everything and made things 100 times worse than even humanly possible. 
I am learning to love myself, I am learning to ignore the voices of my past, the voices that LIE to me. I know that in the moments that the voices are screaming myself doubt becomes trying, but know that I am trying. I am fighting it with all that I have and am and I will win.

Grief is illogical

Grief isn’t logical. Yesterday was three months since my dad passed, yesterday was also Good Friday. My uncle died, 5? years ago, on Good Friday. Jesus died on Good Friday and came back to life. I’ve been teaching my class about this great miracle all week, repeating the words Jesus loved us so much that he died for us but then God brought him back. He spent time with his friends and then went to heaven.

There’s this voice in the back of my head that says it’s not fair. Why can’t my Dad come back so I can hug him one more time, tell him I love him one more time. Why can’t my uncle come back so we can say all the things that we’re left unsaid.

As I said grief is illogical. I know these thoughts are silly and don’t make sense. I know that comparing the situations is dumb but your brain does it’s thing in and in my grief I just want that moment more with the people I love and miss so much.

I thought I understood grief after loosing all my grandparents, even after loosing my uncle with unfinished business but I knew nothing. My dad and I have nothing left unfinished except that he’s my dad and I wasn’t and am not ready for him to leave me yet. There are things he supposed to be here for, little moments like silly conversations and big moments, life moments.

Grief is illogical and it sucks!

Bullying…not just part of growing up.

This is a topic I’ve thought a great deal about over the last few years. It’s interesting how this term has seemed to change since I was in school. I was wicked picked on but at the time would never have considered myself bullied because bullying was only seen as physical when I was in school. Looking back today I would apply it and would say that how we treat people has a lifelong, lasting effect on how a person grows and who they become.
Growing up I was perpetually the new kid. I went to five elementary schools from kindergarten through 5th grade moving mid-year in first and third grade. I was lucky to attend only one junior high but went to five high schools. Again moving midyear in my freshman, sophomore, and senior years. As a kid and teen I was heavy, wore glasses, had braces for a number of years and was just as much an introvert then as now. I also had a temper and wore my heart on my sleeve so I was fun to pick on. It was easy to get me to react and even when I tried not to it only lasted so long before the explosion was even more glorious than before. I went home many a night feeling like I was useless, stupid, and hated by all. Like there was no point in my existing in the world if my only purpose was to be a punching bag. I learned to slink into the shadows and do everything in my power to be as invisible as possible. I was angry and distrustful of people’s actions. I could go into details of friends mooing at me, people saying things just cause they knew it would hurt me or piss me off, of the teasing and tears but that’s not the point. So what is?
A few months ago I saw a meme, sadly I can’t seem to find it again, talking about how we all need to just pull up our big kid pants and realize that bullying was just part of life and not that big a deal. I’ve been unable to get this idea and how wrong it is out of my mind.
A few weeks ago I was at a company event and at the end all my co-workers were dancing and having a grand old time I sat back smiling and enjoying watching. Wanting to join in but also fighting the terror of what people would think if I did, fighting the terror of drawing attention to myself. One of my coworkers came over and pulled me out, I made numerous excuses and fought against that tugging hand. At the same time I appreciated it. I appreciated being allowed to be part of the group and realizing that it was ok.
As I thought about this and my reaction I wondered if I would be the socially anxious and scared person I am.  Always afraid of what people will think, saying the wrong thing, and what will happen if I’m brought to others attention.  I am fighting to break out of the protective box I created for myself but it’s hard work.  I don’t want any child, any human being to feel the way I felt growing up.  To struggle to find their own self worth.

Je t’aime et bonne nuit Papa

My father died 11 days ago.  That is such a weird sentence to write.  I always knew that I would lose him and it likely wouldn’t be in his 80’s or 90’s but never thought it would be at only 67.  My father spent the last decade and a half of his life battling various health issues some due to genetics, some due to his weight, and some just to the luck of the draw.

Almost a year ago we found out that he had liver cancer and after much testing that in his case it was terminal…there was a lot of time spent on what does this mean.  Will he die tomorrow; in years, weeks, months…what?  After conversations we resigned ourselves to the idea that he would most likely be gone by Thanksgiving maybe Christmas; he would not see 2017.  He did he saw 14 days of it.

Over the nearly a year that he battled cancer the greatest sign of him being sick for many many months was that he lost weight and strength.  In the last months of his life his brain went from being a slightly leaky pot to a severely leaky sieve.   He lost track of time, forgot how to do many of the normal things in life, he forgot much.  He never forgot his family and he never forgot that we loved him and he loved us.

The last time I saw my Dad he could not carry on a conversation but he knew who I was and responded to my ‘I love you Papa’ with ‘oh, love you to kiddo, bunches’ in a quiet voice.

Many years ago on the night before my Dad was ordained to the transitional deaconate my sister and I gave him a father’s day/ordination present that was a small white beanie baby bear.  The bear was made as an honorific to the late John Paul II.  Its tag read:

“Teacher, Writer, Father, Friend

Your Love for us will never end

Throughout your life a light did shine

On acts of kindness to all mankind”

To us it was the perfect gift for our father who had always been those things in our life.  As I look back on his life and listen to people who knew him talk I realize how much those words apply to his relationship with others as well.  He never truly knew how beloved he was or how highly many thought of him.

My sister and I often talked about how our Dad had changed when he went to seminary.  My dad was ALWAYS an amazing father and a good person but he was a little (okay a lot) more rough around the edges when we were growing up.  You could see more of the man who spent six years in the Navy living on a ship with a bunch of rowdy sailors, causing trouble and getting away with it because he was GOOD at what he did, at least as he always told it. 🙂

Growing up my Dad would always go to bat for my sister and I with our teachers.  God forbid a teacher did something he found unjust and sent a note home for him to sign.  I loved it!  I remember once a teacher gave the whole class detention because a handful were being disrespectful and rude to a sub, her reasoning being that we should have made them stop.  When she handed the notes out telling us to give them to our moms to sign (mom traveled and was away) I walked up and asked if I could give it to me Dad.  (Yes, I was and am a smartass) She said yes and I remember grinning and she looked at me questioningly and I remember basically saying that this should be fun, and that he won’t like this.  When I gave him the form he signed it, not on the designated line but after a paragraph explaining that I wouldn’t be staying and what he thought of her teaching methods.

My dad adored my sister and I and we were both pretty good at getting what we wanted from him, he hated to say ‘No’ to us when we were little and he hated when we were upset.  If we wanted something at the store generally a simple “look, Daddy, that’s neat” or a “Can I have this Daaaaddy, Please” got us what we wanted with mom shaking her head in the background.

I remember styling his hair with our clips and hair ties; he would just sit there and let us, a small smile on his face.  I remember asking him once if he ever wished my sister and I had been boys and him telling me he wouldn’t trade us for the world.

I remember being goofy with him, I remember the first time I made him laugh with a joke I made up on the spot, I was so proud of myself as I shouted “I made a funny” which made him laugh even harder.

I remember him making fun of the people getting out of their cars to watch the mudslide as we sat on the highway stuck.  The running commentary, the voices as he pretended to be them had my sister and I rolling in the backseat and my wonder wondering about all of our sanity.  She often seemed to be wondering about his sanity in the sillier moments.

I remember when my Dad would ground me it never lasted for more than a few hours, at most a day and that was rare.  A simple “I’m sorry Daddy” with a smile and a hug rectified everything…unless of course you were lying than you were in more trouble.

My Dad taught me to play chess with the pieces in made and the board my Grandpa Don made as a wedding gift for him.  I loved that time with him.  He NEVER let me win and therefore to this day I’ve never won a game of chess against him but oh how I loved that time with him.

As I grew older I loved to just sit and talk with him, politics, history, and religion were some of the best things to debate, discuss, and learn about with him.  I remember in high school we were talking about something that I had recently learned in history class and was arguing with him, RUDELY, and he got frustrated that I wouldn’t just Shut-up and listen and threw the couches decorative pillow at my head.  Mom wasn’t too happy when it grazed me and hit the lamp…let’s be clear she was upset about the lamp, me I was being a Shit and deserved it.  I often teased him in my adult years about the time he threw a pillow at my head.

I learned a lot just talking to my Dad, he knew a little about a lot and as well as a lot about a lot of various things.  He had a thirst for knowledge and was always reading and seeking out knowledge.  I learned to not just go with what everyone else says from him but to formulate my own opinion.  I’ve learned about a lot of odd things and read many a book that I wouldn’t usually read because I didn’t want to just jump on the hate bandwagon but formulate my own opinion and ideas as he taught me.

This idea of knowing what you think especially applied to faith.  Dad and I would spend hours discussing religion and faith, he often played devil’s advocate challenging me to not just say ‘yup I believe _____’ because others did but to understand and know.  We did not always agree and I know he, generally, respected the fact that I didn’t just spout back his beliefs any more than I would someone else’s.

I miss him, I would give anything for one more conversations, one more Chess game, one more hug, and especially one more Je t’aime!   Je t’aime is I Love you in French.  Growing up Dad would speak to us in French sometimes, just to be silly mostly but it made me want to learn French so I took a couple years in high school, my French is at about a 2/3 year olds level I would guess.  When I learned that Papa was basically the French equivalent of Daddy he became Papa.  When I was an adult and my folks and I were in a shared household for a number of years due to his health issues a tradition emerged.  Every night I would knock on his door and say “Je t’aime Papa.  Bonne nuit.” on my way to bed.  He responded with “Bonne nuit, je t’aime aussi … beaucoup” or some variation thereof.

I could go on and on talking about the amazing man that I called Dad, Daddy, & Papa.  He had his flaws like all people but he was also a good man and a great father.  I consider myself blessed to have been raised by him.  To have learned from him and been shaped by him into the person I am today.  As a child he was my hero and in many ways my closest allie in this crazy world, as I grew older I saw more of his tarnish and flaws but still was often awed by him.

Je t’aime Papa et bonne nuit.

Of Death and Dying

Just over two years ago I wrote an entry entitled ‘You Don’t Know’ about the idea that you don’t know what it like to walk through someone elses illness.  I’d like to revisit this idea from an emotional stand point instead of a physical one and from the point of someone who is losing someone they love dearly.

“I would give anything for one more visit with my mom”

“Embrace the time you have”

“Spend all the time you can so you have no regrets”

‘You’re so lucky, I would give anything to have known it was coming, to have had more time”

This is what I hear and more when I ‘complain’ about watching my father fade away as he suffers and dies slowly.  When I struggle to figure out how to deal with the emotions of losing one of the most important people in my life.  I nod my head and I say thanks but I wanna scream “YOU DON’T KNOW!”.  Early in this process when my dad was still whole the platitudes of embracing him, making memories, and regret for lost loves I understood at this point they hurt.

Here is what a visit with my father looks like:

I visited yesterday, I walked in to his room in the nursing home, not much different than a hospital room, and he was sitting up in his bed.  His breakfast untouched in front of him, his hands shaking uncontrollably, glasses off, eyes barely open.  I said ‘Hi Papa’ and he looked at me and was happy to see me, he knew who I was (Thank God!).  He said ‘Hi’ and then muttered incoherently for a bit.  I could see that he was struggling to see what was on his tray so I asked where his glasses where, he continued to mutter, I found them and asked if he wanted them.  He said yes and I helped him put them on as this simple task that he’s done most of his life is a challenge for him now.  I took the lid off it, his fruit, and hot cereal telling him what each was and asking what he wanted. He muttered at me for a bit more and I figured out he was asking about the juice on his tray.   At this point my mom came in and I asked her to find him a straw as I held the cup to his lips because he couldn’t, his hands were shaking too much and too hard.  When I pulled the cup away he said “That’s good!!!”.  Mom came in with the straw and with help he finished the juice.  He proceeded to mumble and mutter at my Mom about her looking ‘different’ and ‘less dark’, we have no idea.  He then spoke a bunch of garble gook that had the word “back” in it.  Based on his movements I could tell his back hurt and between gestures and deductive reasoning we figured he wanted the bed down.  Throughout the half hour I was there he faded in and out of consciousness many times.  I had to leave the room once as I refuse to cry in front of him.  Very little of what he says make sense, and he doesn’t in general understand what he’s being told.   When I left I kissed him on the head and told him I loved him he said he loved me to.  The only positives, truly, of this visit are that he knew who I was and understandable said I love you.

This may not seem that bad or whatever but I left this visit and for the first time in this process completely fell apart.  I’ve strived to control and push down the feelings of this process and seeing my Papa like that made it impossible.

When people tell me what they would give for one more visit with their lost love one in response to my sorrow at my father’s decline I want to ask if they would still feel this way if this was what a visit looked like. If after a visit you sob for the person you love.  The reality is I would give anything for one more conversation with my dad, my Dad – My Papa, not what’s left.

Just because you’ve lost someone and miss them doesn’t mean you know what someone who is going through that experience is feeling.  Your relationships, your way of dealing, your everything is different.  You are a different person and therefore your way of processing is different.  Even my sister and I, both losing the same person in the same way, are going to experience this loss differently because we are different.

I’m not saying don’t help or offer your thoughts to people going through this process, some of the greatest help through this has come from friends who’ve been through it, I’m saying think before you speak.  Your desire for your whole completely missing parent doesn’t mean that my sorrow for my declining and slowly vanishing and suffering parent is invalid.  I can’t embrace my time with him anymore because time with him means sorrow and pain.  It means watching him search for words, it means watching the odd shape of his mouth, it means trying to understand the gobbly gook that is speech, it means seeing the pain on his face, and it means watching him sleep and fade in and out of consciousness.