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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.

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Careful the things you say

I’ve been thinking a lot over the past few days about the nature of words, the nature of friendship, and how things can so easily fall apart.

I’ve had the line “Careful the things you say Children will listen. Careful the things you do Children will see, and learn” from an Into the Woods song going through my head the past few days.  This doesn’t just apply to children it applies to all people. We hear what is said to and about us. We see your actions and it affects us and you.

I’ve watched as friendships have exploded over words throughout the past few days.  I watched as one friend had the cruelest of comments made to her…someone she thought she knew and cared about searched their knowledge of whom she was for the meanest things he could say. I watched as a friend told lies about me, maybe a small lie but a lie none the less. I watched as myself and friends were attacked and bullied for trying to keep people safe. For trying to honor and respect all needs. For not thinking that it’s ok to tell people with mental health issues to ‘suck it up buttercup’ or ‘pull up their big girl pants and deal’ with something that could push them over the edge in their depression or what not.

I watched as I tried to understand all sides of the issue and I was attacked for not automatic agreement and told I was harassing as I sought clarity and understanding, as I tried to save a friendship not worth saving.

I understand being hurt; I understand being angry…it’s ok to feel it is part of being human. It is not ok to be cruel. It is not ok to attack someone for not blindly following you and agreeing with you. It is not ok to tell people that their feelings don’t matter, that only your thoughts and feelings do.  It is not ok to lie about people to get your way. People listen and hear your words. People apply those words and ideas to themselves and learn from them.

Hey God, are you there?

I love this image but I find myself doubting it’s validity.

I’ve found myself struggling lately with God, with the idea that He has any power, at times with the idea that he is even there. I was raised believing in God and where I have had minor moments of doubt they’ve been short lived and more a rebellious teen thing than anything thing else. I wasn’t very good at it, the whole rebelling thing wasn’t me and rebelling against God and my ever important faith wasn’t in me, not truly. So that fact that this has become a struggle for me is terrifying…it’s almost worse than the situation causing he doubt.
You see my Father, my Dad, my Daddy…no my Papa is dying and there is nothing anyone can do about it, apparently not even God. But that’s not true, if God truly is all powerful as we are taught he could do something he just chooses not to. He chooses to allow him to suffer and slowly die. He chooses to watch those of us who love him suffer as we slowly watch him change, loose himself, and die.

I went to church this morning for the first time in just over a month, not that anyone noticed my absence but that’s a separate issue. I’ve been so angry at God for so long now that I didn’t want to be there. I realized in conversation with someone the other day that I am loosing my faith. I am loosing my belief that God cares about us…if he cares why would he allow this kind of suffering? I went to church in hopes of finding Him…finding understanding for why this is happening. As I sat in the back of the church listening to the liturgy I love and have always found comfort in…I felt alone. I couldn’t find Him. For the first time in my life I went to church and didn’t take communion. Partly cause I was taught not to if I was harboring anger towards anyone and I figure God counts here, and partially cause in that moment I didn’t see the point.

I’m torn, I’m angry at God! I am. So he must be there, you can’t be angry at something that isn’t there but maybe I’m wrong, maybe what I’ve always believed is a lie, maybe he isn’t there…or maybe he is and just doesn’t care.

“Light up your face with gladness

Hide every trace of sadness

Although a tear may be ever so near

That’s the time you must keep on trying

Smile, what’s the use of crying?”

WHY? Why do we tell ourselves this? Why can’t we just embrace and feel the sorrow instead of putting on a happy face? I don’t understand it.  

I teach my students to understand and identify their emotions, that it’s ok to feel what they feel and yet as adults we have to put on a smile and only ‘feel’ (i.e. Show) happiness. You must answer the question “how are you” with GOOD or great. I’m ok isn’t enough and God forbid you’re “fine”. It’s bull&@$t!

We were given all the feelings, we’re allowed to feel them, to process them, and maybe we’d be able to do the later better if weren’t always forced to pretend.

Daddy

As many of the people in my life know my Dad has terminal liver cancer. He’s going to die, and it’s going to happen sooner rather than later. I am often asked how he is. I find this hard to answer because I don’t want to give false information or false hope. He’s doing pretty well. His doctors are good and are managing his palliative care well. He is handling it with Grace. Being a retired priest and Christian he has no doubt as to what happens next and in many ways seems to see it as the next great adventure. All outward signs say that my Mom is handling it well as well. There’s this great acceptance that comes from both of them when we talk about it. I am as always amazed by my parents and their faith and trust that “All Shall be Well”, whatever happens.

On the rare occasion that I am asked how I am doing I don’t know how to answer. I’m doing lousy, and I often don’t know how to put that in words as well as feeling like it’s not fair for me to say that. I am angry at God for putting my father through this. My dad is not perfect but he is a good man. He is a man of faith and a man who’s always worked to share his faith and God’s unending grace with others…and yet once again his health fails him. I am terrified that I am going to break down and not be able to stop. I am sad. I am frustrated with myself that I can’t be faithful and trusting in this process. I am tired, no matter how much or how little sleep I get I am just tired. My brain doesn’t want to work half the time. I keep waiting for the next shoe to drop, the next stage in this process.

People tell me how lucky I am to have this time, to know it is coming and where that may be true there are moments when it feels like a curse. I’ve always known that someday I was going to lose my Daddy, I’ve always know that I was going to lose my Papa sooner rather than later I’m just not ready for it to be this soon. I don’t know how to process this, I don’t know what to do, how to help make it ok for him, for my mom, for my sister, for all the people who love him. I don’t know how to deal with the knowledge that there are things that aren’t going to happen. My father’s never going to walk me down the aisle (when and if I get married), he will never see my kid’s (when and if I have them), and they will never know the amazing man who can make a mud flow funny, who taught me to play chess, or the fine art of haggling at Monopoly. The man who taught me the joy of a well-timed bad joke. The man who encouraged me in all (ok most) that I did, the man who thought me to ask questions, to understand my faith, and to fight for what I believed in.

I will miss being goofy and strange with, making my mom worry about our sanity. I will miss debating with him, learning from him, and just talking theology, politics, and so much more with him. I am who I am in many ways because of him, I will never regret being a Daddy’s girl!

Can’t we all just get along?!

Why do people have to be so hateful?  If you spend any time on social media these days is mostly someone b$%#@ing about what someone else does or doesn’t believe.  If you’re a Christian than you are a mean nasty person who believes that everyone who doesn’t live the way you do is going to hell.  Then there’s the whole right wing /left wing christen thing where they all seem to think the other side is going to hell.

Supposedly to all Christians non-Christians are evil, wrong, and damned.  Of course to all non-Christians Christians are hypocritical sh@#s who don’t care about anything but convincing them that they must change and be like them.

I watch all this crap.  I watch as friends (Christian, Pagan, agnostic alike) all have moments when the bash on someone else’s beliefs and just want to shout “Can’t we be friends”.  I hate it when I read something a friend writes in attack of a stereotypical Christian belief, a belief that isn’t actually all that accurate, a belief that I don’t actually know a single Christian who actually believes that way.  I feel the same frustration when I see other beliefs attacked, when I see post about how Wicca is devil worship or other Evils that are perceived of Pagan faiths.  Evil believed of any religion or faith that is not founded in fact frustrates me.  So often if you do a modicum of research (I don’t mean searching Meme’s or Wikipedia but actual research) you find that much of what the world is fighting over is bunk, it’s misunderstood, misinterpreted beliefs.  It’s the junk that the minority of people spews as fact but is actually made up garbage to insight fighting for God knows what reason.

I wish we as a people could just find a way to go out into the world in love and caring, instead of judgment and hate.  I am a Christian and there are times when I want to run from that word because of what it has come to represent for so many.  Instead of representing a loving caring God and people it seems to represent so much hate and anger.

I try so hard to live my life by two simple rules, “loving God” and “loving people”.  I’m not perfect (so so far from it) and I fail sometimes (ok a lot)  but the reality is in my mind the latter is what the world needs most.  It needs people who will just show love and kindness to one another regardless of our differences or similarities.

Fat Shaming and Nicole Arbour

Yesterday a friend in a group on Facebook posted about a video that was posted by a Comedian named Nicole Arbour entitled Dear Fat People. I was saddened by the fact that this persons attempt to be funny had hurt someone I cared about but thought nothing more of it. Throughout the day I saw the same reply post shared by many of my friends. A reply that was well thought out, honest, and mostly kind to those of us who fight with our bodies and body image as larger people. At this time I also came across Ms. Arbour’s video and my only thought was “Wow, what a Bitch” and “She really doesn’t get it!”

Fast forward to today when another friend shared yet another video in rebuttal to the original, shaming Nicole as well as Fat people. Where the original video had little effect on me, this one did. It left me in a huddle mess sobbing and feeling like a useless bundle of fat. As anyone who knows me knows I have battled with my weight my entire life, I have always hatted my weight but rarely hated myself because of it. I hate that a stranger talking to an anonymous audience had this effect on me.

All this emotion has led to this posting, one I need to express how I feel so that it doesn’t fester and grow into something else, and two I want to say that appearance has nothing to do with who you are inside. I hate that we live in a society that puts so much emphasis on how we like. Telling girls, and guys, that if you aren’t a specific size, if you don’t have a six pack…if if if … then you aren’t worth anything. This is BULL SHIT!!! A person’s worth has nothing to do with outward appearance and everything to do with the kind of person they are. So please remember that whether you are a size 0 or a size 20. You are important in this world and what you do, who you are, and how you treat people is more important than anything else!

Now to work on getting myself to remember and believe these words. Do as I say not as I do…for now.