A Little Slice of Summer

Yesterday I went on an adventure of sorts up a long, winding, rocky mountain trail that tested my strength with every clomp and squeak of my crutches as I pulled myself along.  I followed behind, not even able to keep up with the dogs who were excited and ready to run.  They meandered on and off the path, smelling everything, peeing on anything they liked.  They were too impatient for us humans, two of which, with their strong legs, took everything in stride, barely breaking a sweat as they led the way before me.  Once in a while they stopped and patiently waited for me to catch up.  I'm sure they doubted me.  They second guessed our decision to trek down to the river via that particular path, but I was determined to make it all the way, even if I had to crawl at some point.

"It's about a quarter of a mile." He said just as we started out.

"Are there hills?  Because hills are what worry me with these crutches." I said.

"No," he assured me, it's not hilly."

After we walked about a quarter of a mile we stopped for a second to give my underarms a break from the crutches rubbing against my bare skin.

"It's a little farther than I thought." He admitted.

I rolled my eyes, and sighed heavily.  "So how far is it then?"

"About another quarter of a mile." He grinned.

We started off again.  I tried my best to keep up, but they still, in their wholeness, left me behind. Eventually they got tired of waiting for me, and with the swimming hole ahead, were anxious to dive in.

"Let me carry you," he said.  I protested at first, feeling guilty for being broken, for slowing us down and making even the most pleasant, peaceful of activities more difficult than it needed to be.

Having none of my protests, he made me wear his heavy backpack, then slung me over his shoulders like a wounded soldier.  He carried me, my crutches and the backpack as if we weighed hardly anything.  As I hung on tightly, we had a light conversation, as if two people in such a position making their way
up a mountain path toward the river were perfectly normal.  He carried me a good distance, though once my right leg started to tingle from lack of blood-flow he stopped and set me down on my good leg.  He handed my crutches back to me and I again started my clomp, squeak, clomp back up the trail through rocks and horse poop, weeds and brambles, trying my best to keep up but still falling behind.

My boy walked between us, a yellow bag full of snacks and sodas weighing him down.  He tossed it over one shoulder, then the other, now and then complaining that it was cutting into his skin. I tried to carry it and continue on my crutches, but I was scolded for that.

He took the bag from me and carried it for my boy for a few minutes before declaring that he needed to carry me again.  That time, he left the backpack on and lifted me over his shoulders once more.  The forest was more dense, and the wide pathway we started out on had narrowed to a mere foot trail, meant to be walked single file, every man for himself.  With the boy trailing behind us, he heaved forward uphill, down hill, through thick brush and slanted ground until finally, a clearing.

"I hope you'll think it was worth this once we get there" He said just before we noticed the river within view. He took me into the clearing and set me down on my good leg again.  We threw our stuff down on a mound of dirt and moss and he stripped down to his ragged cut offs and jumped into the river.  I helped my boy get out of his clothes. In nothing but his underwear he took off without hesitation, which for some reason, took me by surprise.

Before I knew it, the boy was out in the middle of the river, stomping away on the rocks, splashing himself and laughing at the swimming dog.

I made my way down to the riverbank, but with only one good leg, I felt I could go no further.  The thick, black river mud was ready to swallow my crutches, should I try to use them to get to the one rock that was close by.  So I stood there for a while, feeling happy, enjoying the beautiful river, watching them play, but feeling kind of left out as well.

After a few minutes, I finally weakened and asked him to help me get onto the rock.  The rock I had in mind was only a couple of steps away, partially covered in mud, and so far out of the water I would have only been able to stick a toe in.

He lifted me over his shoulders again and waded out onto the slippery river bed. I protested a little when he started carrying me so far. I was afraid he would slip and fall.  But he was steady and confident, telling me to stop talking as he set me down slow and easy on a large rock.  "Just ease yourself down right here," he commanded.  So that's what I did.

Fully dressed, I sat down on the big rock and slid myself across it to a spot where I could sit and hang my legs over into the cold water.  I let the current flow against my feet as I sucked in a deep gulp of fresh mountain air and let my eyes take in the beauty that surrounded me.  Poised on my rock I could see up-river, where it forked off in different directions. There were rocks lying just below the surface of the water where my boy ran around picking up smaller stones and tossing them into the deeper water.  The dog swam relentlessly, needing an occasional reminder to stop and take a break.

He jumped in again too.  Just jumped right off the rock ledge into water so deep that it swallowed him up. He swam with the dog and tried to get my boy to join him in the deeper part, but my boy isn't always trusting of others.

"This," I thought to myself, "is the sweetest taste of summer I've had in a very long time." And I sat there on that rock, my broken leg dangling in the water, the tube in my belly safely in the dry, for a long time.  I took in the sounds of strange birds chirping around me, the crackling fire by the riverside, the sound of my boy laughing and making up stories as he played.  I felt the breeze blowing down the river, sweeping my sweaty hair back from my face, brushed my hand across the rocks, felt the familiar slime of the river bottom beneath my toes. I felt the sun baking my skin on one side, shivered as the dog shook beside me, showering my back in cold mountain water.  I breathed in the smell of river mud and campfire smoke and for that brief bit of time, I felt a lot like the old me.

I've been missing the old me lately, grieving her even.  Life sometimes gets so messy that you can lose yourself among its clutter if you aren't careful.  There in the middle of the river, I was surrounded by peacefulness. The whisper of leaves blowing in the wind replacing the sound of shuffling papers. Instead of filling out forms and researching options, I sat quietly with myself, trying to figure out a way to keep my Diet Coke from floating away.  Instead of propping my leg on pillows, staring at a TV or computer screen, I propped my feet on the rocks and watched my son play.  The worries of my usual day were so far away from me that even if I had thought of them, I wouldn't have believed them to be true.

I knew it wouldn't last forever, yet even with the difficult trek back to the car on my mind I had no regrets.  I spent my afternoon in the most perfect spot imaginable, although it did take a lot of work for everyone to get there.

Once out of the river, we dried ourselves a little by the fire and ate our snacks.  It's funny how the water makes you so hungry.  Then we set out back down the trail to the car.  Again it was work, with me struggling to keep my rhythm with crutches, allowing him to carry me for a while here and there, but we made it to the car in what seemed like no time at all.  The evening was settling upon us as the breeze around us cooled and the sun hid behind the canopy of trees all around us.  We drove home with the windows down, not quite ready to close ourselves off from nature completely.  With our bellies growling and the worn out dogs sleeping in the back seat, we made our way back home feeling a little lighter than we did before we left.

Because sometimes all you need is a little slice of summer to remind you that life is really, really good.

Stay Positive: Good Advice or Unrealistic Expectations?

Rosa, from Orange Is The New Black on Netflix

I like the Netflix show, Orange is the New Black.  I just finished watching the second season in which the story of Rosa, a seasoned prison inmate who is battling terminal cancer is revealed.  You learn that in her youth, Rosa was obsessed with money and the adrenaline rush of robbing banks. The jolt you get when a flashback of Rosa's youthful adventures fades back into present
time, showing her bald head and aged skin is most unsettling.  One scene in particular that struck me was when the Prison Counselor, Mr. Healy is sitting at his desk explaining to Rosa that the state will not pay for the cancer treatment she needs to stay alive. He follows that up with a speech about the importance of staying positive, and a comparison to someone in his family who seemingly beat cancer with nothing more than a pleasant attitude.  Rosa isn't buying it.  She heard what her doctor said loud and clear, that without that particular treatment, she was a goner.  I identified with her so much in her response to Mr. Healy's well intended pep talk.  She remains outwardly angry, but you can see the grief in her eyes and she accepts her diagnosis and refuses to grapple for the false hope that Healy is dangling in front of her.  He is visibly uncomfortable with Rosa's resignation, as many people in our lives are when we don't jump on the "positive attitude" bandwagon and stay there perpetually.

Of all the pieces of unsolicited advice we ESRD patients get from everyone, from family members to perfect strangers, "You have to stay positive." is probably the most heard and most frustrating one.

Often, we feel pressured to smile and pretend that everything is fine so we don't make the people around us sad or uncomfortable, but on the inside we are dealing with a stark reality.  We are chronically ill.  There is no cure for what we have. There are only ways to manage and buy time, and none of our options are particularly bright and cheery.  On the outside we may look as healthy as the next person.  Nobody knows about the tube taped up to your side underneath your clothes unless you show it to them. Nobody notices the access in your arm unless you choose to wear short sleeves so they can see it.  Those people aren't there at night when you hook yourself up to a machine, and they aren't with you three days a week at the clinic while you get your blood clean. Our hair doesn't fall out, we don't have to endure the nausea and discomfort of chemotherapy, so how bad can it be?  We often feel the need to play along with the expectations of other people in order to keep them from showing pity for us, or to keep them from worrying about us.  They need us to stay positive.  They are asking us to stay positive, because they can't handle us when we are realistic about where we are and what we're dealing with.

So I am wondering if "Stay Positive" is really a great piece of advice that through a mind-body connection leads to better outcomes for ESRD patients, or is it an unrealistic expectation placed on us by the people in our lives who aren't able to cope with our illness.

There's certainly something to be said for a positive attitude. It motivates you to keep working towards a happy life.  It helps you cope with difficult days and it keeps you connected to people in more fulfilling ways. However, I think it is truly unrealistic and even unfair to demand that someone who is dealing with the pressures of this disease or any other life-threatening illness remain in a positive state of mind at all times.  Part of processing the loss of health from chronic illness is finally coming to an attitude of acceptance.  Perpetual hopefulness requires a certain level of denial to maintain.  At some point, if we are to assimilate our losses and find peace with our lot in life, we have to acknowledge and accept what is happening to us.  Without that acceptance we will remain stuck, our personal growth will be stunted and we may miss out on a very important part of who we are supposed to be and what we are supposed to learn from life.

The reality is we will not be cured. We will not go into remission.  We will be coping with ESRD for the rest of our lives.  We will either be slaves to the dialysis machine or we will be transplanted with kidneys that might or might not last.  We will be swallowing hand fulls of pills just to stay alive, we will suffer the side effects and financial blows that the cost of maintaining life imposes upon us.  The reality looks pretty grim, and if it's your reality, you can only refuse to look at it for so long before the ugliness of it catches up with you.

We shouldn't feel bad about not being able to maintain a positive attitude all the time.  We shouldn't stuff down our thoughts and emotions to protect the people around us who can't or won't come to terms with what we are facing.  We can feel down sometimes.  We deserve the opportunity to grieve for the lives we used to have and to grieve for a future that seems fraught with stress and struggle instead of whatever we had always planned.  We need the space to make the transition from healthy to sick in our own way and in our own time-frame and we don't deserve the admonition to be positive every time we express a negative thought.

There is  often a fine line between dealing with reality and allowing yourself to fall into the trap of self-pity.  Staying in a place of sorrow and pity for yourself is no better than walking around with a fake smile plastered on your lips.  Either extreme robs you of authenticity. If you are perpetually positive, you may be unable to accept and process the negative effects of your disease, if you are perpetually depressed and full of self-pity, you will never learn to value and live in each moment you are given.

We need to give ourselves permission to feel our pain, our sorrow and even our hopefulness.  We need those who love us to understand what a complex process we are going through, and that it wouldn't even be healthy for us to never have a day when we aren't discouraged by it.  We are human and often our weaknesses and fears catch up with us, even when we are trying our best to keep a positive attitude towards life and our disease process. We don't want this for ourselves, and we don't want to put you through it with us, but it is what we have, so give us the freedom to experience it wholly in all its negative and positive ways.  Let us grow through it and with it, as you try to accept us even on days when we can't take your advice.

Maybe you're wondering now, "If I can't tell you to stay positive, what can I say when you're down?" And the best answer I can give you is to just be there with us.  Acknowledge with us how crappy things really are.  Let us be who we are in each moment, allow us to feel our emotions without judgement.  Don't shame us for the days or weeks or even months when we feel buried by the stress of a life with ESRD.  Just stand with us, give us permission to be.  Remind us that you love us no matter what.  Give us permission to grieve both aloud and in private.  This is our experience. It is our chance to grow, to become something new and better, but we will never achieve that if we aren't allowed the chance to process the feelings that well up inside us.

And perhaps during those times when we can't find anything to feel hopeful about, you can take up the slack and feel hopeful for us until we make it over the next hump and find our own place of peace and hopefulness once more.

What NOT to Say to Someone Who is Struggling

I went to see my therapist today.  She's a social worker, and in my opinion, social workers are much better than "therapists" at listening to people, empathizing with them, and helping them find their own way through their troubles.  I don't need someone to listen to me and diagnose me or give me pills to fix what ails me.  I just need someone around who will give me permission to feel what I feel without trying to judge me or talk me out of it.

One thing that came out of our conversation was my complete lack of patience with other people lately.  I talked to her about all the things people say about me and to me, how when I'm having a down moment or a bad day I get chastised for it.  She agreed with me, that sometimes people speak before they think, and even though they mean well, they can end up making you feel crappier than you felt in the first place.

I think it's only fair then to share some of the things that are just generally inappropriate things to say to someone who is chronically ill or terribly depressed, or both.  If you've said some of this stuff to me, don't feel bad about it.  I know all my friends and family want to encourage and be helpful to me and I know you don't mean me harm. 

1. "You have to stay positive.'  No, I don't.  I've found myself floating around in the whirlpool of a life with crap floating all around me and you want me to stay positive?  Before you utter those words, let the reality of my situation sink into your head:  I have END stage renal disease.  I am on dialysis.  I have a broken leg. My house is in foreclosure.  No one will hire me because they seem to think that I can't work and be on dialysis at the same time. I have a rocky relationship with the daughter who lives in my upstairs bedroom. I have fatherless seven year old who has anger issues. We won't even talk about the loneliness or the screwed up relationships or any of that stuff.  Think of your life when noting extraordinary is going on.  Think about your every day stress and then add my stress to that.  That is where I am every morning when I wake up and every night when I fall asleep.  It isn't going to change. There is no cure, no way out of this except through it, and sometimes going through something means being tuned in enough to your reality to let it make you feel shitty.  So I will have shitty days and weeks and maybe even months.  It doesn't mean I've given up hope, it just means I need to feel and process what's happening to me and I do not have to be positive all the time. 

2. "But you are so strong!"  I don't feel strong right now.  I realize I have overcome a lot of  adversity and I'm glad you have confidence in me, but I am not strong.  No one can be strong all the time.  I am grieving for a part of myself that has essentially died.  The part of me that was independent, outgoing, confident and active. This disease takes away so much and if I don't take the time to be weak, to let myself grieve for what I've lost, I will never make it to a healthier place. I am not strong and I can't be strong right now, but maybe I need you to be strong for me.  I'm sorry it makes you uncomfortable when I am not the person you used to know, but I"m dealing with some shit here, and this is the kind of shit that can make a weakling out of even the strongest person.

3. "Why don't you_____".  Fill in the blank.  Go back to work. Go visit your family. Get a new hobby. Invite people over...etc...When you start a question with "why" it sounds an awful lot like judgement.  I feel like you're telling me I chose this for myself.  It seems like you don't understand or haven't considered the fact that I have been fighting this all my life and that I have given it my best shot.  Guess what?  It caught up with me anyway.  No one will hire me once they know I am a dialysis patient. My family makes me feel like I'm losing my mind. My hobby is this blog. I'm ashamed to have people over because my house is a freaking disaster area.  I never realized how much harder housework would be without the use of one leg.  Trust me, if I'm NOT doing something you think I should be doing, I have a good reason for it or I've already tried it or I'm trying it right now.  My reasons  may not be something understand or agree with, but for me, they're reason enough.  Why don't you keep your judgmental attitude to yourself?

4. "It doesn't look that bad." I have explained a million times why my leg isn't in a cast, but for some reason, once people realize it isn't in one, they seem to think my little broken leg isn't such a big deal.  My leg is broken IN my knee joint. Meaning the bottom part of my leg on which the integrity of my knee depends is simply not there. It was crushed in the accident I had, and now my knee is being held together with pins, bone grafts and a plate. It isn't in a cast because it is my knee, and if I go too long with out moving it, it will get stuck in a straight position.  Ever tried to walk without bending your knee?  I don't want to walk like a pirate, so sue me.  I do the range of motion exercises I'm supposed to do every day even though it hurts because I want to walk normally again someday, which is something my doctors are telling me might not happen.  They say I'll probably always have a limp. So, maybe it doesn't look bad from the outside because there's no cast on my leg, but it is a horrible way to break a leg so give me some credit for putting up with this and whatever follows it.  Would you want to hop around on one leg for 3 or 4 months?  Didn't think so.

5. "Well you look great!" I get this one a lot, usually from people who haven't seen me in a while.  I don't know what they're expecting me to look like, but apparently I defy the imagination.  Inevitably they ask how I'm feeling, and then they follow that up with "Well you look great!" Thanks for the compliment.  I realize you're referring to my recent weight loss, even though it has come at the price of my health.  I'm sorry to disappoint you by not looking sick enough, but this is just who I am.  It's as though you want me to forget about the fact that I'm battling this disease or trying to recover the use of my leg and just be happy that I at least look good.  I don't mind being complimented so much, but when you tell me more than once in a sitting that I look good, I start to doubt the honesty in your voice.  If I look so good, why do you have to keep saying it? Who are you trying to convince, me or you?  Whether I look like it or not, I'm struggling with this.

6. "You're letting this get the best of you." Let me just say that the best of me is all that's left. This is a disease that strips you of everything you have ever felt good about.  It attacks your self-esteem by disfiguring your body. It makes you tired when you want to be energetic.  It makes the people in your life scurry away like mice.  It robs you of financial security, your job, your pride in what you've managed to gain for yourself. It makes you feel incompetent, alone and quite lost.  It takes away your dreams for the future and it makes you regret a lot of your past. It makes the people you love worry, it makes them pressure you to act like you feel fine when you really don't. It robs you of time and resources.  It strips away so much of who you are and once it's done doing its stripping, there's nothing left of you but whatever lies at your core.  The best of me is who I am when I'm at my lowest, and I don't think I've ever felt much lower than I do now. So don't tell me that the best of me has been defeated or that I've let this disease take even the very essence of who I am away from me.  If I'm hard to love it's not because the best of me is gone, it's because this is all I am and all I've really ever been without the frills.  

7.  "You have so much to live for." I do?  Oh, you mean my son.  I have my son to live for. I guess you're right. But children grow up and move away.  Then what?  What will I have to live for once he is finished growing up?  I know you can't answer that question for me.  I can't even answer it for myself right now, but I know it has to be more than the cause of raising my child.  He's important to me and I love him with all my heart, but I can't put the burden on him of being my only reason to live.  Nobody needs to live with that kind of pressure, especially a child.

8. "I made it through_______, so you can make it through this."  A week or so ago I made a comment online about the difficulties I'm having with my son.  Someone posted that she made it through raising her son, so I would make it too.  The difference is, she didn't have a 7 year old at 44.  She also didn't have ESRD or dialysis.  She wasn't single either.  She had a good paying job and as spouse and her health. It isn't a fair comparison.  While I'm sure she faced challenges, they weren't even close to the challenges I have.  Likewise, people often tell me of the struggles they have overcome in an effort to make me feel better about coming out on the victorious side of this disease.  But what they don't get is that no one is ever victorious over kidney disease.  It is incurable.  All I will ever be able to do is cope with it.  If it decides to take more from me than it has already, there's not much I can do about it.  I will make it through this, but I won't make it out alive, and that's the fundamental difference between me and most of the people who want to make comparisons.

9. "You shouldn't feel that way."  I am aware that I sometimes let my thoughts and emotions overwhelm me.  I know you don't like knowing when I'm depressed or feeling particularly hopeless about things.  But the truth is, I feel how I feel.  I will never tell you that you're wrong for feeling the way you do.  All anyone really needs to is to be heard and accepted, and if you really want my feelings to change, you'll hear me and give me permission to feel what I feel without judging me.  Everyone deals with situations where they should or shouldn't do or say or feel certain things, and in time we work our way out of those circumstances, but we often can't get through things if we deny ourselves the right and yes, responsibility, of feeling our emotions. This might not be easy for you to hear or go through with me, but it is necessary if I am ever going to grow past it and let it change me in all the ways I need to change in order to cope with it and live my life.

10. "Why did you do that?"  Part of being single is learning how to manage on your own without help from other people.  Being a single mother makes that all the more important.  So after I broke my leg, I had to start adapting right away.  That meant that I had to do some things for myself that were risky and it meant getting hurt once or twice trying to do those things. But when people found out that I had tried lifting a heavy box by myself or tried to make the bed without leaning on crutches (which is nearly impossible) I got the high-pitched "are you crazy" form of "Why'd you do that???"  I did it because I had no other option.  I did it because I was the only one here and I had to do it for myself.  I would like help with things sometimes, but I don't always get what I want and when I don't have anyone else to depend on I have to depend on me. I do what I do because I have to.  So don't fuss at me about it, especially if you don't want to help me with it.

I'm sure I, Like everyone else, have said some pretty stupid things to people without realizing it.  I'm positive I have.  When you've never been in the same situation as someone else, when you don't know the history behind who they are, you can't always know the right thing to say.  You want to help, to encourage and be supportive, but sometimes what you say makes matters worse no matter what.  It is in those times when you can never fail to help by just letting the person you love be who they are in that time and place. Allow him or her to experience emotions, good and bad and accept them, even if you don't understand them.  More than anything, I need to know that my friends and family love me unconditionally.  I need to know that they don't think less of me when I'm not positive or optimistic.  I need permission to be who I am, feel the way I feel without judgement, without being chastised and without feeling as if I am disappointing everyone around me by being human.

I know sometimes you're just trying to understand me.  Sometimes you're sick of my attitude.  Sometimes you've had enough and you just want a break from me and all the trouble that comes with me.  I understand that, and I'm not angry with you for it.  I just hope that by sharing this I am able to help those who want to be an encouragement to others, and maybe help other people like me who struggle with enough already, without the people around them putting their mouths in gear before starting up their brains.

And if I have ever said an insensitive, thoughtless thing to any of you in your times of trouble, I sincerely apologize. 

Happy Birthday, Dummy

I am writing to you.  You know who you are, or you will by the time you finish reading this.
Remember a few years ago, when we went out for Mexican food and then drove around aimlessly, trying to think of something fun to do?  That was the night that I found a paper at the restaurant announcing Neil Young's concert in Spartanburg.  I bought us both tickets to go, only I ended up going without you.

I never told you that I gave your ticket to my guitar teacher.  It wasn't that I really knew him all that well, but I remembered him telling me once that he loved Neil, and I figured I might as well share something I treasured so much with someone who would appreciate it.  So, on the night of the concert I sat in the very last row at the top of the auditorium smelling weed from the people smoking behind us, with my youngest daughter and my guitar teacher on either side of me.  I thought about you, but I realized you were never meant to be there with me in the first place.

It seems like life plays tricks on you sometimes, when people wander in and out of it seemingly without purpose.  It's as if we sometimes need someone to come along and shake us up, make us remember who we are and why we are.  It's as if, without those people, we might close ourselves off from everything, both good and bad and begin to just exist without really living.

And with your birthday being tomorrow, I just thought I'd let you know that even though we are miles apart, even though what once drew us to one another was ephemeral, I'm still grateful that you came along and shook me up.

Somehow you managed to get to me, past the rawness of my hurt and hopelessness of my heart.  You tore me apart some more, and then you left me to heal on my own.

And maybe that was just what I needed to make me understand that I have to value myself, because it's very likely no one else will see my worth.  It's up to me to make the most of this life, and even though I'm not feeling very hopeful about it lately, I know I can't give up.

Because I don't want to get to the place where I need to be shaken up again.

Love Always,


Rebecca

Depressed? Maybe it's The Internet's Fault

Feeling down?  Have you been depressed lately, lacking faith in humanity and dealing with a nagging sense of hopelessness that you just can't shake?

Well, it might just be the internet that's causing your woes. Every day people willingly subject themselves to the faith sucking power of a few particular types of online information, and every day we struggle to keep a sense of optimism regarding other people and the world around us.  If you're feeling particularly down on mankind and yourself lately here are a few web habits you might want to give up for at least a while, just to see how much better you'll feel without allowing their steady stream of dreary information and negative consequences infiltrate your brain and/or your life.

1. Local news websites are terrible.  Around here I think the worst culprit is Fox News Carolina.  They are the only news station in our area that tries to be hip and cool while relaying stories of murder, horror and mayhem.  To top off the absurd vibe they try to give off as super attractive, young with-it people that everyone wants to be friends with, they engage in completely inane stunts like "Friday Dance Party" where the entire crew dances around like a bunch of fools for a few seconds on camera. If you join their Facebook page, you'll get frequent updates about their personal lives that, unless you know them in person, are completely boring.  These people who want to be respected as journalists even post hyperbole asking for public opinion on certain stories.  This is especially annoying on slow news days when there's nothing particularly controversial about a story, yet they insist on trying to stir up some ire amongst their readers. Visiting their news page is an exercise in frustration and depression to the highest degree, especially once you scroll to the bottom of the page and witness the older news stories that are linked with sensationalized headlines designed to shock and even frighten you.  Last night I even saw on Facebook that they were trying to get "pumped up" before the evening news; they posted a corny video of themselves dancing to "In The Middle Of The Night" by Billy Joel, looking goofy and seemingly oblivious to the fact that they were about to go on the air and spread every tidbit of bad news they could find around here to anyone gullible enough to turn on the TV and listen.  Now I know that in every profession we all have to have our ways to discharge our stress, but you won't find healthcare professionals cracking medical jokes about dealing with patients online.  Some things are better left behind the scenes.  I don't watch TV, but I do tend to read the news online and I've figured out it's just a bad idea unless you really want to become an agoraphobic hermit, afraid to step out of your house for fear of a drive-by shooting or being killed by a drunk driver.  The news is, for the most part, always bad news.  The feel-good stories just aren't considered to be top-shelf journalism and that is never going to change. Stay away from the local news for a few days, and see how much your mood improves.

2. Just like the local news, Facebook can bring you down fast.  It isn't so much that you're reading horrific stories about the insane violence that people perpetuate against each other, like in the news; but you still get a sense that the world is just really screwed up if you spend too much time reading status updates and watching videos shared by your friends and websites like Upworthy.  Everyone wants to feel as if their life is is as meaningful and filled with love and acceptance as anyone else's.  But on Facebook people seem to fall on both ends of the spectrum with very few falling in the bounds of having "normal" lives.  Either your friends are highly successful, positive and lucky, or they are deeply depressed failures who seem to have nothing but bad luck follow them around like a black cloud of doom.  Truth is, at different points our lives all fall in various places on that spectrum, but we are less than honest about that on Facebook.  Try to not subject yourself to your bragging ex-best friend from high school or your perpetually depressed co-worker for a few days, and I bet you will start to regain your sense of equilibrium when it comes to looking critically at yourself and your life.  You'll feel more normal, more balanced and more like you've got a chance to get to where you want to be.  Trade in the defeat that constant reminders of other people's woes can give you for your own sense of hope and optimism.  You might just decide that it's not worth keeping that social networking crap going if you ever get used to living without it again.

3.  Stay away from Craigslist. I'm looking for a place to move to soon, so I've spent a little time every day on CL searching the real estate section.  First of all the sheer number of people who use the site to scam others is astounding.  For every legitimate person you contact there seem to be 5 more who want to rent you a house that doesn't exist, or isn't for sale, or isn't even theirs.  Last week someone even gave me an address to drive to and when I got there it was a completely different house, occupied by folks who had no intention of ever moving and who were unaware their house was being advertised for rent.  Also, even if you're just curious as to what other people do, don't ever read the Personals or Rants and Raves.  There are some truly sick and depraved people in the world.  Apparently they've all decided to come together on Craigslist to convince the rest of us that we should never believe the best of our fellow human beings.  Women are strictly objects, men are consumed by their primitive sexual desires, and racism and bigotry thrive in an atmosphere where folks are allowed to hide behind their anonymity.  They spew their sexism, misogyny and unbridled anger at people who are different from them with complete disregard for social standards of conduct.  If you spend any time at all reading Rants and Raves, you will completely give up on the redemption of mankind for a while. If you plan to buy something from someone you met on CL, make sure you meet in public and bring backup.  Otherwise, you may never be seen again.  This site can be seriously dangerous, in addition to being downright creepy and amoral. 

4. Google searches for medical and/or mental health problems will always land you in an anxious state of mind, wondering if you indeed have some horrible illness, or if that's just a heat rash on the back of your neck.  You'll end up diagnosing yourself with Bi Polar disorder or even worse, a personality disorder.  You'll convince yourself that the tiny red bump on your inner thigh is cancer or herpes or shingles.  Everything you eat will make you feel like you are slowly committing suicide if you read too much about health and nutrition and you might discontinue your much needed medications if you linger too long on WebMD looking at the list of side effects and drug interactions of each medicine you take.  Some things are better left for the real professionals to decide and are not open to our interpretation of the online symptom lists that are often over simplified or under represented.  If you are having concerns about your health, go to a doctor.  If you're worried about your mental state, call a good therapist.  You'll be glad you let the pros handle the situation, and your mind will remain free from the hamster-wheel of anxious guessing at what might be the problem.

5. Trust me, never EVER try to figure out the inner-workings of a relationship or of another person by reading about relationships online.  Don't take the advice of "dating" gurus, and don't fret over what their definition of a good guy/girl is, or how to determine the health of your relationships.  You will end up fretting over things that you shouldn't give a second thought and you'll ignore the meaningful stuff.  These relationship experts are often just experts at manipulating human behavior and they're out to teach you the art of doing just that.  But if manipulation of others doesn't come naturally to you, you'll never be able to keep your cool and carry out their techniques.  The best advice in the world is probably just to be yourself and let others be who they are.  If something great blossoms out of two people coming together, great!  If things are so complicated that you have to turn to some manipulative stranger online to gain a sense of security and control over the outcome, you're probably hanging on to tightly to something that needs to be let go.  Seriously dating "experts" can ruin your love life.  Stay away!

6. Stop looking for love online.  I'm sure that once in a blue moon a couple hooks up through Match.com and goes on to live happily ever after, but in their own commercials, dating sites admit that only 1 in 5 relationships begin online.  When you break that down to an individual basis, it might mean you'll end up going on a dozen or more dates with total losers before you even find a person you'd want to see a second time.  Often men and women on dating sites have completely opposite goals; but if you look hot and a guy wants to get in your pants, he'll tell you what he thinks you want to hear at least long enough for him to get your zipper down.  Most people lie about themselves in their profiles: either they're fatter than they say, older than they say or more married than they admit.  Guys tend to post pics of themselves six years ago when they had a head full of hair, or pics of themselves wearing sunglasses and baseball caps like a disguise.  When you meet someone in real life, you can size them up pretty quickly.  You see the bald head, but you also get the cute sense of humor.  You might notice the 10 extra pounds, but you really dig that great smile. Online dating is a sure fire way to get yourself into a predicament with a stranger that you'd probably been better off never having met.  Stick to the real world despite what everyone else is doing.  You'll save yourself a lot of headaches, and you'll be much more likely to find the kind of relationship you want.

Alas, The Fleeting Years Slip Away

I visited my parents today.  Not an unusual thing to do on Father's day, I know, but it is something that for me, requires a lot mental shoring up before I hop to the car and cram my seven year old in the back seat for the hour-long ride. I always know how these visits are going to go before I even get there, and they never fail to meet my expectations, except of course for the rare occasions when someone else is also visiting when I arrive...then the visits exceed my expectations.

What do I expect? You must be wondering.  And I understand your curiosity, after all, I am just going to hang with my folks for a few minutes on a Sunday afternoon.  How challenging can that be?  Well let me tell you, it's plenty challenging.

See, my folks are 80 years old.  Not the oldest people I've ever hung out with, but old enough so that communicating with them is sometimes a nightmare.  They are both quite hard of hearing.  My father is always glued to the television, some fishing show or sports game blaring in the background.  My mother has taken to mumbling in her old age, so even though she speaks loudly, you often can't understand a darned thing she's saying.  Years ago my folks decided that they no longer needed to be courteous to one another and started both speaking at the same time to the same person about two different things.  I thought back then that I felt crazy by the time I left there, from listening to two separate conversations at once from my parents.  I started to cut my visits a little shorter unless I was able to corner my dad outside and then visit with my mom inside.  It seemed the only way to retain my sanity was to divide and conquer.

Now though, with the TV playing loudly in the background, the air conditioner in the window humming loudly, my dad telling me a story I've already heard a million times and my mother vocalizing in an unrecognizable language I tend to feel as if my head is about to explode.  Now you understand my afternoon. Except for it was even worse than that.

My oldest sister came by while I was there.  She sat on the left side of the room. My mother was on the far right and my dad was beside me, sitting across from my mom, flipping through one loud channel after another with the "Button".  That's what he calls the remote. My sister and mother had a long disjointed conversation about their health...actually they both had separate conversations with me about their individual health.  Seems my sister has recently found out she 's diabetic.  My other is diabetic too and has been for about half her life.  She now has diabetic neuropathy, which she refers to as "diabetic worms."

"Diabetic worms?" I asked, raising my voice to a decibel to which it hasn't been since...well, maybe ever.

"Yeah," she answered. "I got them worms in my feet." she answered, raising one leg to rub the bottom of her foot.

"It's just something she made up," my dad interjected without looking away from the TV.

Turns out that yesterday afternoon, my mother became so convinced that there were worms in her feet that she called EMS.  She told them she was positive it was worms because they kept knocking the blanket off her feet when she fell asleep.

"They told me I wasn't doin' no good." She said.

"Yeah," I hollered back to her as my sister went on chattering loudly in my other ear about drinking more water and avoiding bread. "Sounds like your neuropathy is really giving you a lot of trouble."

"It is." She conceded. And then the whole conversation with both her and my sister simultaneously screaming in both my ears started repeating itself again.

Charlie sat on the couch beside me looking bewildered.  He has never handled noisy situations well, but this was more that noise, it was chaos.  Even I was beginning to feel as though I were on the edge of a breakdown.

I tried to engage my dad in conversation, but he couldn't hear me above the hum of the AC and the loud murmuring of my mother and sister.  Charlie eventually got up and went over to stand by his papa, talking to him about our vacation last year and how his big sisters were doing.

That led to the whole conversation where my mother tried to make me feel responsible for the choices of my two adult daughters.  My mother doesn't approve of one daughter's much older boyfriend, and she is disdainful of the other daughter's relationship as well.  She knows my daughter isn't married, and lectured me for at least half an hour about girls who end up ruining their lives by getting pregnant before they're wed.  I deflected and changed the subject as quickly as I could.

Then the topic somehow changed to all the people they know from church who have committed adultery, sexual assault or some other sin.  I really don't want to know anymore about that than I already do.  So at that point, I found my way to exit, hugged them both and wished my dad a happy father's day before I slipped out the door.

My dad has celebrated almost 60 Father's Days.  Is it any wonder that he doesn't really place much meaning on it anymore?  Honestly, I think he would have been content to have sat in his chair with some peace and quiet all afternoon, rather than have to keep turning up the volume to drown out all the talkative women around him.  He's gotten all the new ties a man could ever want: He's gotten homemade paper cards with our hand prints on them, new cologne, flannel shirts and fishing equipment, you name it.  There's nothing he really expects or wants from any of us, other than a quick hug and for us to tell him we love him and to be left the heck alone to watch his shows in silence.  After 60 years of being a father, I guess even Father's Day seems to become a bit of a drudgery.

I drove home with my head still spinning a little. It isn't until after I leave that I sometimes piece together all that was said to me in the flurry of words and background noise at their house.  Today all I could really come up with was the fact that my parents are aging more rapidly than ever before.  My dad's memory isn't what it used to be. My mother has less couth than ever.  Even my eldest sister seems to be drifting into the all consuming swell of age.

And that was the last thought I could muster up about this day.  It's that time really does fly. Our kids grow up and grow distant and we all have to accept the inevitable passing of youth.  So before our hearing goes, before we find ourselves with nothing more to talk about than the increasing failures of our bodies, before we need a blanket over our knees in the summertime and while we can still remember what happened yesterday, we need to put all we can into making the most of every facet of life.

Love the people in your world. Give of yourself--I don't mean your financial resources either.  Money is something that gets used up and forgotten.  Give to those you love from your heart, and try not to expect anything in return.  Laugh a little every day.  Pray for the strength to remain grateful in the face of every circumstance. Treasure every hug, every smile, every freckle on the nose of that kid you tuck in every night, because one of these days, that kid is going to find himself fidgeting in a chair as he listens to you talk about your failing health and he will need some positive thoughts of you he can recall.

Like the time we drove to Florida and my dad was so tired that he lay on the hotel bed one morning singing silly songs from Bugs Bunny cartoons, tickling everyone who dared pass within arm's reach.  Or the time I watched Psycho with my mom and the phone rang just before the shower scene, making us both jump our of our skin and scream in terror. I need to remember them as the people they were before they became old people. It makes me appreciate them more, and it reminds me that youth doesn't last forever.

Happy Father's Day, y'all.  If that kind of thing is important to you.

If not, I wish you all the peace and quiet your heart can hope for, and plenty of fresh batteries for the "button."

Eheu fugaces labuntur anni.

What Should I Do for My Dad.

My dad, kind-hearted, hard-working, life-loving and god fearing man that he has always been, has never asked for anything.  He has always readily given to others as much as he could, teaching me without words that when you give to people, you are ultimately giving to God.  I think about him so much lately as I lie around the house, needing crutches or a wheelchair just to get from one side of the room to the next. With all the fatigue from dialysis and the grieving for my lost summer, I keep wondering how he did it.  How did he work a full time job (plus overtime) in a factory, keep up with two huge gardens all summer, fix every little thing that got broken, find time to take us girls fishing, take us all to church every Sunday morning, Sunday evening, and Wednesday evening--driving the church bus to pick up people in wheelchairs and old ladies who lived alone...he never sat still for very long and I just can't fathom where he got the energy to keep going.

All I know for sure, is that God was the source of his strength and we were the fuel that kept him moving forward.  He worked in a factory, on his feet with gout so severe that I saw it bring him to tears a few times. He came home with little bits of steel embedded in his eyeballs, cuts on his big hands and sore knees but none of that ever stopped him from truly living.  He worked hard for us, but he pursued his passions too.  He was an amazing fisherman--something that I think must have been a genetic trait in his family, since his brothers were also pretty amazing fishermen too.  He loved to hunt, to be outside with nature, whether he was alone or with one of us girls tagging along.

Our fishing trips were the best.  After a morning of excitedly waiting for him to get the boat hooked up and ready to go, we would all hop into the big blue pickup truck (he only drove blue trucks for years and years) and windows down, head off to the lake.  He taught us how to bait a hook.  How to cast so our hooks didn't get caught on brush under the water.  He taught us that the best things to eat on the water were Vienna Sausages from a can.  We developed a taste for those, along with Saltine crackers, Moon Pies and Mountain Dew (or Pepsi).  He even taught us girls how to pee over the side of the boat.  We learned that fishing was fun but serious too.  He didn't make us be quiet, didn't mind if we spent more time playing with the worms in the tackle box than we spent watching our hooks, and even if we weren't looking when a fish bit, he would hand us the rod and let us reel it in.  I remember a few times that he even reeled a fish in for us, then gave us the credit for catching it because it bit the hook we cast into the lake. It gave him pride to put us in the boat and speed us across the water to a fishing hole.  His face turned red and he beamed with joy when he recounted stories of our adventures on the water; like the time I caught a gar, or the time I didn't pay attention when he said we were moving to another spot and let his new rod and reel fall into the lake as the boat sped away. We always came home so tired we could barely move, often falling asleep in the truck, listening to the low whistle of its big side-mirrors against the wind as we leaned our heads on Daddy's shoulder and drifted off into our dreams.

Lately I look at my father and my heart kind of sinks.  Skin cancer from all those years in the boat has changed his appearance dramatically. He's still a big guy with a booming voice, but he looks more frail than ever. He sits in his recliner (always the furniture of his choice) with his knees covered by a blanket most of the time. Even in the summer he tends to get cold.  He talks about his plans to go fishing, to go camping, to hunt again, but I know and he probably does too, that the days when he could just load up the truck and take off on his own are over.  It seems as though he pushed his body so hard when he was young, with all the hard labor, the tinkering in the car port, the wrestling on the floor with little girls, the hunting and fishing and loading wheelchair bound nursing home patients into the church bus, that his body has given up on him before he was ready.

My daddy sacrificed a lot of afternoons working in a garden, rather than resting his tired bones.  He gave up sleep to take on overtime so I could have a yearbook or new clothes or some other thing I probably didn't need as much as want.  He gave up sleeping in on Saturday mornings, spending them instead working on a boat and loading up little girls to go fishing.  Instead of taking afternoons to rest before going to work third shift in a factory, he loaded cardboard boxes on his truck and took them to be recycled for the extra money. Instead of going alone to "haul cardboard" he took a girl or two with him, stopping to buy them chocolate ice cream that they ate with a flat wooden spoon on the way home.  He didn't spend his Sunday mornings asleep; he loaded his family into the church bus and picked up as many other people as he could on the way there.  He didn't spend Sunday night watching TV, he loaded us all up again and again, picked up others on the way back to church.  He worked, he served and he sacrificed because he loved us and he wanted us to have a good life.

Yesterday I asked a friend, "What should I do for my dad?" I was thinking of Father's day.  Every year it rolls around and every year I wonder what I can do to show him how much I appreciate the hard work he did, the sacrifices he made and the love he gave to us as we were growing up and I can never think of anything that seems like enough.  I wish he had a nicer place to live in his old age.  I wish my mother were more of a companion to him.  I wish he had caretakers who could take him fishing or for walks in the woods. I wish I could buy him all the things he deserves for working so hard all his life, but I can't.

All I can really do, I suppose, is make the most of my own life.  It must mean something, if he gave so much of himself for it.  He wanted happiness for me.  He wanted me to be successful, to be good, to live a life as free from pain and adversity as possible.  I know he could have never had the power to make any of our lives as easy as he wanted them to be, but he worked hard to give us all the love and encouragement he could give. He tried to teach us to love God, to give of ourselves to those less fortunate and to work hard to meet the needs of our families. He taught us to take care of ourselves, to expect more from the men in our lives, to sacrifice for our own children.  Who would I be, had I not followed behind him in the red clay of our garden, trying to place my feet directly in his big footprints as he plowed the field ahead of me?  Would I have even grown up to know what love is or how to give it, or that I'm worthy of it?

Even in my darkest days of depression and discouragement, I have to remember what was given by him so I could live a meaningful, joyful life.  If I waste it sitting around feeling sorry for myself, I've wasted what he gave me.  If I'm not grateful for every minute I get to give, to love and be loved, I have not appreciated his love for me.  So I suppose even in his frailty, my father is still teaching me and I am still struggling to follow in his footsteps.  Even in my grief over what I've lost and my regret over what I've screwed up in my life, I need to make an effort to appreciate what I have.  He gave so much so I could have a life worth living.

Maybe all I have to give him is that life, lived fully and joyfully no matter what obstacle I have to overcome.  Without the strength of his sacrifices, I probably wouldn't have made it this far and if I ever forget that I am worthy,  I need only to remind myself of the selfless way he has always lived--giving me choices he never had, empowering me to live authentically and letting me know that I am always loved, no matter what.

I will call him tomorrow and he will tell me the same stories he told me the last time I called.  He will talk about the truck his brother found for him, he will recall our vacation to Branson last summer.  Maybe he will recall a fishing trip or two we took together years ago. As I listen to his voice over the phone I will feel comforted and I will be reminded that no matter how worthless I sometimes feel, I have always been worth the world to him. I hope I have the sense to absorb the meaning behind his sacrifice and when I hang up the phone, I hope for the presence of mind and openness of heart to embrace my life for all the challenge it is to me right now.   I should thankful for it. I hope I find the strength to go forward and live it as though it were worth something, because to him, it has been worth everything.

To Crappy Metaphors

So, in case no one noticed, I've been really bummed out lately.  I don't expect anyone to understand.  Heck, I don't really think I can even ask for empathy.  I am well aware that I am getting on your nerves with my negativity and my shitty attitude.  I want you to know that I appreciate you being kind enough to not just tell me to shut the hell up and get over it.  Even if you did tell me that, I wouldn't be able to do it.

Depression is just something that people struggle with, and I don't use the word struggle because I mean it's optional or it's something that we just like to do for attention.  It is really, truly a struggle.

Back when I was a kid I went to a company picnic with my sister and her husband.  It was one of those country day things, where they hid change in a sandbox full of sawdust and let the little kids dig around for it, and for some reason, a fascination  with competitions that involved overcoming slippery obstacles.  There was a greased pole with a one hundred dollar bill on top that
you could try to climb. If you reached the bill, it was yours.  There was also a greased pig, which is something I don't think they'd allow anymore, but it was kind of entertaining to watch as the little squeaker was let go in a pin and half-a dozen guys chased after him, tackling him only to have him wiggle free and run off squealing in another direction.  I guess you could take your pick of metaphors here: Kids digging around for buried treasure, only to keep finding nickels and pennies, people trying with all their might to climb up a Crisco covered flag pole without slipping backwards just so they could reach a hundred dollar bill, or a poor little pig who had no idea why he was covered in grease, or why so many big smelly guys wanted to tackle and capture him.  The point is, they were all struggling against something.

Depression is kind of like a greased flag pole with some kind of goal at the top that you just can't seem to reach no matter how hard you try.  It takes effort to climb, and you keep sliding back down to the bottom, no matter how much effort you put into it.  It's not at all that you want it to be difficult.  You see other people climb right up and reach their goals and it looks so effortless to  you. But when it's you, it's a whole different story.

It's just that I am really feeling like a greased pig lately.  I feel like I am stuck in this little tiny world being tackled by something bigger and stronger than me no matter which direction I try to go.  I feel like there's no way I can escape.  I have no idea why trouble chases after me, I just know I need to keep wriggling out of it's grasp as best I can.  

But even greased pigs that are scared and pumped full of adrenaline end up getting tired after a while.  I still remember watching as one dude after another tackled that little pig at the picnic.  At first, he was wildly running from corner to corner, making them chase him in circles, squealing in protest and slipping past even the biggest, strongest looking hands.  But after a while he slowed down.  One small wiry guy stood him down.  With his arms outstretched as if to tell the pig there was no way past, the guy stayed ahead of the pig at every move, eventually moving in, putting the little guy in a headlock and declaring victory.  There were just too many men and only one slippery little pig and he got tired of fighting.

I know it's a pretty crappy metaphor--a greased pig, but it's the best way I can think of to describe how this flood of events in my life are bringing me down.  They're wearing me out, physically, mentally and emotionally.  It sucks to be depressed, but when you're depressed and you feel like you're being pursued by trouble, you lose a lot of your will to keep fighting it.

I guess that's all I can say, and if you still don't understand...well...I don't know.  Don't ask me to explain it any better, because this is honestly the best I can do.

Greased pig.  Me.  That's about the sum of it.

Skittles on Ambien, Taste The Rainbow...and do some editing when you wake up.

This morning at 4:00 am, I woke to the sound of rain in my tin roof. I covered myself up tight in my comforter, pulled a pillow over my head and said " thanks Almighty one" for the rain so sweetly falling, bouncing across my tin roof like a joyous choir announcing that God is alive and well, should anyone be wondering. When I finally crawled from the comfort of my sheets and looked across the yard, I realized, it hadn't been raindrops at all, lulling to me to sleep, it had been the rainbow disintegrating over our heads.

The littlest of our pack were on ladders before breakfast, gloves on their hands as they were not about to cut themselves on the sharp edges of the gutters. Grandmas rocked in their rocking chairs as the husbands hurried off to work as usual. Mayhaps, a rainbow did fall apart in the right on the roofs of Long View Hills North Carolina, but the last thing any decent man would want to do about it, was let the rest of the world know. They might have picked up a few skittles and quietly tucked them into a shirt pocket for later, but in their minds that event was never to be spoken of again. So, if someone from out of town offers you a skittles after lunch, beware. They might not have been made by human hands. No one knows where the rainbow really comes from.  Maybe the pieces were made by little imps who observe you every day and have decided you need more color, more flavor, more tooth decay in your world!

Don't feel bad if the rainbow missed your part of town, it is on a mission to set all candy-loving kind free. It will sacrifice company secrets, It will out the CEO. It will campaign and campaign until one day skittle filled rain will wash over our world, rendering traffic impossible.  The world will be complete chaos and there will be only one solution. Every man, woman and girl must do her part. We must stand united  with our mouths open like baby birds to taste the rainbow as it falls apart right onto our world. We must come together in belief and with courage to fight away the pestilence of dentists, doctors, nutritionists and health coaches who try to deny us our most basic right of consuming as much colorful sugar as we want. We must rebuild that bubble of gastronomic Hope on which our rainbow needs to stand.
Don't just run inside and shut your door.  Our tasty rainbows need your support! Do your part!  Open the flue. Clean the rainbow off your roof and save the pieces for when you really need them. Make a a dream come true for one little  chewy Strawberry dot of heaven and not only will your mouth thank you, the rest if the rainbow will thank you too.


Your local dentist will even  thank you because despite his admonitions, you will have made him a millionaire. Some day everything will be ordinary again. You'll miss that silly rainbow, but you'll be glad you stuffed pieces of it into your pockets for later. 

Only the grape flavored one seems to talk too much and you're afraid he's moving in on your girl. Take the good with the bad.  After all life is supposed to be bitter-sweet at times, and if you really want to remove the competition, you can just feed Grape to your goat.  Even goats love to taste the rainbow it seems.

I Reserve The Right

I reserve the right to be a shithead sometimes.  If I put up with you when you are being a shithead, you can do the same for me.  I don't like you when you're a shithead either.

I reserve the right to be pessimistic at least one day a week.  I don't know anyone else who has ESRD, a broken leg, a mortgage in foreclosure, a snotty kid squatting in the upstairs bedroom, a judgmental ex-husband, no job, no prospects for a job and a seven year old to raise that they can't even take swimming in the summertime because they were stupid enough to break their leg two weeks before school was let out for summer break...and that's just the stuff I feel like telling you about.  Cut me some freaking slack once in a while.  I'm not Miss Fucking Sunshine.  Expect too much from me and you WILL be disappointed.  I am only human.

I reserve the right to say Fuck, fucking, shit, shithead and any of the other words you might find offensive.  There's a thing in this country called free speech and if you don't like what I say, you can suck it.  '

I reserve the right to tell people to suck it.

I reserve the right to call em like I see em, even if what I have to say makes you uncomfortable or angry.  I, like every other human being can only interpret your motives, meaning or intent based on your actions. When your words and behavior don't match, that tells me you have some problems that need to be worked on. All I can do is love you and support you.  Your problems are not something I can fix, even though sometimes I wish I could.

I reserve the right to be offended. When you treat me like I am less than human, less than you, less than a woman, less than others, I will feel offended and I will feel hurt.  I am HUMAN and I lack Sociopathic traits, so I feel things.

I reserve the right to feel things.  Maybe it makes me weak in your eyes and maybe it makes me girly, but I have every right in the world to love, to hate, to feel sad, to feel happy, to feel hurt and to feel angry. I'm not afraid of my emotions. If my feelings make you uncomfortable, I'm not the one with the emotional issue because:

I reserve the right to express myself.  If you do or say something hurtful to me, I will let you know.  I might be angry with you, but anger often comes from hurt so when I express my hurt feelings, you might hear nothing but anger.  Trust me, those words come from a broken heart, not from hatefulness.  If I didn't care, I wouldn't feel hurt, and I wouldn't get angry.  I have every right to let you know how I feel and I don't have to feel bad about expressing myself.  I can express myself verbally or in writing and the way I feel does not change from one medium to the next. My feelings are valid, no matter what medium I use to express them.

I reserve the right to be angry.  Things that are unfair make people angry.  There's enough unfairness in my world right now to anger a few people, yet I am expected to shoulder it gracefully and with a positive attitude at all times.  Well, y'all, I'm pissed and I don't mind telling you.  I have an ungrateful spoiled child treating me like I am the Princess of Evil when I have supported her lazy ass for MONTHS.  I have a disease that compromises my life, that takes away from my quality of living.  It is not curable, and I get sick of talking about it, and I get sick of people trying to make me feel good about it.  At  my dialysis clinic there's a stupid bulletin board with little blobs of what I suppose are supposed to be Phosphate, and a headline that says, "Lets Play Phosphate Catch" or something asinine like that.  There are happy little faces every where and little catcher's mitts.  Fuck them.  This disease is nothing like playing a fun game.  It sucks, and their bulletin boards can suck it.  So can they, for that matter.  Let's see them be happy about not eating any of the food they like or having to chase down their meals with two horse pills three times a day.  I'd love to know how they'd react if they had to wake up every day and realize they are tethered to a stinking machine by a hole in their bellies.  They certainly wouldn't be crafting cutesy bulletin boards.  Yeah, I'm angry.  So don't keep doing crap that pisses me off and then expect me to just take it like a good little girl.  You can suck it too, you know?

I reserve the right to sleep all day and avoid people.  Sometimes being around people is just too much.  I believe I could become a hermit if I didn't have a kid that needed to be socialized.  People let you down, they expect you to be perfect, they expect you to never have a problem or a difficulty.  The ones who love you are selfish with you.  They don't want you to divide your attention between them and anyone else. People are self-centered and thoughtless.  They say stupid things to people like me and expect that I won't feel angry or hurt by it.  They mistake my kindness for weakness and try to take advantage of me.  Sometimes I let them, because its easier than putting up a fight.

I reserve the right to NOT be strong.  I never bragged about being strong.  I never asked to be strong and I never tried to be strong.  You just deal with the cards life gives you, even when they suck and you know that in the end you're going to get your ass whipped.  I only appear strong because I have no choice but to make the best of every day, knowing that my days are extremely limited.  Now before you say that no one is promised tomorrow, let me respond by saying, at least you don't have that horrific car accident hanging over your head like an anvil teetering on the edge of a cliff every day of your life.  I've been living with the anvil rocking on that cliff over my head since I was in my 20's.  In case you don 't know my age, that's a long fucking time.  Practically my whole adult life.  So just imagine living life with a ticking time-bomb taped to your back.  You can hear it ticking all the damn time, but you don't know how much time is left on it.  Don't call me strong and don't expect me to act like I am Hercules all the time.  I'm human and we all have weaknesses.  Mine just happens to be death waiting with a clenched fist, ready to knock on my door.

I reserve the right to love.  It is the most painful thing I've ever done.  Worse than a broken leg, even, but I still do it.  I never want to stop being able to love and I will always give it my best shot.  I'm not talking about the kind of love that gives you butterflies and makes you all goofy inside.  That's a lot of fun, but it is temporary.  Eventually that "in love" thing gets old.  It tires you out, and you start to see that the object of your affection isn't as perfect as you thought in the beginning.  But love is something you give despite the obstacles.  It doesn't matter so much that the other person has demons to fight, or problems to surmount.  It doesn't mean you can fix all their problems or take on all their struggles, but that you can be a source of strength for them.  It means you are one thing in life they can count on when they can't count on anything else.  It means being the one thing someone else can count on when they have nothing else.  I reserve the right to love that way, even if I don't get loved back.

I reserve the right to be treated as a whole person.  I'm not here to do a service for anyone.  I'm not anyone's housekeeper or maid or personal secretary.  If I do something for you, it's because I want to and I love you.  If you don't appreciate it, you are a dick.  If you expect it without asking for it, or appreciating it, I'll get tired of doing it for you.  I'm not here for anyone's use or disposal.  Again, I remind you that I am a HUMAN BEING.  I am not an object without a soul or without emotion.  I was not born to serve you.  I don't know why I was born, but I do know that much.

I reserve the right to be treated with positive regard and respect.  I know that should explain itself, but some people have no idea what those words mean.  Positive regard means you treat me like I am a person of worth in every way.  It means you are honest with me and that we have open communication that is respectful.  It means you don't say or do whatever you think you need to in order to get what you  want from me.  It means you don't poke and prod me to find out what I want so you can withhold it from me on purpose.  It means you don't purposefully say things to try to make me react a certain way.  It basically means don't be a shithead to me while pretending you're my best friend.

I reserve the right to want to give up.  One of these days, I'm just going to stop connecting to this machine every night.  One more straw is going to hit the pile already gathering in my life and it will be the last one.  There's only so much one person can survive, and so far I think I've fought a good fight.  But I am getting tired.  Not just physically, but spiritually and emotionally.  I have been hurt so, so many times that I really think I can't bear another hurt.  I have prayed so much for wisdom and understanding and for direction, only to receive no word from above.  Just this disease and rejection after rejection, from lovers, from family, from my own children.  I think sometimes, I must be a pretty awful person to deserve all this, and maybe I am.


I reserve the right to have personal boundaries and to let you know when you've crossed them.  That's right, you end where I begin.  I have every right and responsibility to engage myself in life in a way that is fulfilling and uplifting to me, but I have no right to step on you while doing it.  Likewise, you have no business crossing boundaries that I have set, either by manipulation, deceitfulness or just being plain ignorant to your own motives.  Don't insult me by thinking I am a border-less person that you can roam about as you please coming and going at will.  Don't convince yourself that you aren't hurting anyone when you step over a line.  Trust me, if the other person is living and breathing, you can hurt them, and if you don't respect them, you probably are hurting them.

I reserve the right to write about whatever I want to in my blog.  If you think EVERYTHING I write is about you, maybe you need a reality check.

I reserve the right to be myself.  I know I'm testy, I'm challenging, I'm fraught with difficulty and struggle.  I know I am often bitter and of a poor disposition.  I know I have fuzzy hair and a not-so-hot body.  I know I'm clumsy and sometimes I seem foggy as hell.  But I'm smart.  I have a great smile.  I love with all my heart.  I give with all my being.  I believe in my friends, even when I don't believe in myself.  I'm more afraid of living than of dying.  I get depressed and discouraged pretty easily.  I get angry when I'm hurt.  I am unfair when my heart feels broken.  I piss off the people I love with my attitude.  I'm irresponsible and I'm kind of lazy.  But I want to see everyone else happy.  I want to make some kind of difference in the world, if only by letting people know that they aren't the only ones who struggle.  I want to be a best friend.  I want to be a confidant, a companion, a source of strength and peace for others, even with my own unease still alive and thriving.  I am not a good person.  I am not a bad person.  I just am, and for whatever reason, God hasn't seen fit to let me kick the bucket yet.


I reserve the right to escape into my own little world, where reality and me live quite at peace with one another. It's when I start to speak of reality outside that world that everyone gets into a tizzy.   Most of the population of the world avoids talking about death and dying.  When you are on dialysis, the doctors are trained to not tell you the prognosis of dialysis patients based on statistics.  I'ts 5 years or less, by the way.  But being that I devour information and must always know more than what they decide to tell me I do research.  That research tells me that I have a 5 (now 4 because I've been on PD for a year now) years left, barring a transplant that goes well.  "Goes well" being the key words there.  Most transplants come with their own struggle and a huge risk of death from surgery, rejection of the organ, and allergy to the anti-rejection drugs you have to take for the rest of your life.  The transplanted kidney doesn't solve all your woes. The disease I have will attack the new kidney too, and it will stop working eventually.  That means back to dialysis, only not PD but Hemo, which is a million times worse than what I'm doing now..  After you get a transplant, you have to take drugs that leave you looking like an escaped madman/woman from the Munchkin County Jail, just past Munchkin City in the land of Oz.  Even if I weren't the vain type, I think I would have trouble living life as a bloated up imp from another land.  I have a hard enough time finding love and acceptance now, won't that just be the challenge of a lifetime??  So, where was I?  Oh yes, back to dialysis to wait for yet another kidney, only now you are farther  down the list because you already got one and now it's someone else's chance to try.  So you have to wait until another half-dead kidney from a poor dead bloke flies in, packaged in styrofoam and ice,, and hope that no one thinks its lunch or another dead cat being sent for rabies tests.

I digress.  I have a right to be blatantly realistic to the point of being fatalistic if that's what I want to do.  I'm sorry if that bothers anyone else or makes them feel sad or bad or makes them think I am pathetic or whatever it makes them think  This is my life and my reality and it sucks pretty much more than anything I can think of.  My chance for redemption is fleeting, and now that I find myself ready to be redeemed, no one wants to hear it.  My voice gets bounced around in empty rooms, answering its own echoes off the walls and wafting back to me for an answer.

Of course I have no answers.  But in that world, it doesn't matter.  My redemption doesn't matter.  Nothing matters except what is.  We don't argue with what is.  We don't try to change what is.  We don't feel angry or cheated or hateful about it.  We just say, hey, this is how it is.  We are pretty cool with it and with the fact that most of us are pretty tired of it and would like it to end.  It's the rest of the world that goes mad when we speak of reality in our situations.  If this kind of crap could happen to us, it could happen to them.  Its much easier for them to turn their heads and wish us well, than it is for them to take a walk inside the sharp, dank, dark walls of reality with us for even a moment.  I could choose to live a lie.  But in the end, it would all turn out the same, so why deceive myself?

I reserve the right to choose.  I can very easily take control over my situation.  I could just be too tired to hook up to the machine a few nights per week.  Then a few more times the week after that, and a couple more the week after that.  Pretty soon, I'll be free from dialysis.  I'll start to get tired and weaker.  I'll feel kind of bad for a few days, but sooner or later, the rest of my organs will get the message and the will start to follow suit by shutting down too.  First my liver, pancreas, endocrine system, my lungs and heart will slow down considerably.  My mind will go, then my brain will fail, causing the rest of my bodily systems to cease all activity.  It is that easy.  Like pulling the plug, if you will.  And I deserve the right to die with dignity and at my own time of choice, rather than waiting around like a suffering sheep being lead to slaughter and then made to wait and wait for his fate to befall him.   I have the right to take control of this.  I know you will judge me.  I know I will be labeled ungrateful, unbalanced, depressed, hopeless, kind of crazy, selfish--all the other things they say about people who take a hand in ending their own suffering.  But I will not be here to listen to their comments or feel their judgmental stares.  I will be at peace with myself and the Earth pressed down on me.  I'll be far from your ridicule, your rejection, your shame.


I have the right to have bad days and good days without having to explain either or defend myself against accusations that I'm not sick enough, or that I'm too sick to be doing something.  I do what my body tells me I can handle.  If I overdo it sometimes, I'm the one who pays for it.  It is none of your business and I'm never going to ask you opinion, so you don't need to bother having one ready.


In short, I deserve the right to say what I need to say, express my feelings, wallow in regret and misery, feel bad for fucking up my life so much, get lost in a fantasy world where none of this exists, and tell whomever doesn't like it to go suck it.  Don't think I'm being an asshole here.  You have all the same rights I have...maybe more, since you are probably a decent person who has lived his/her life honorably.  Me, I'm just some trash that got swept up with the good stuff and had a chance to fool people for a while.  Life is swift though, and you'll get returned back to the junk heap sooner or later, it never fails.  Just be proud of who you are no matter what, and stick up for yourself.  There are a lot of well meaning people out there who would love nothing more than to trick you back into that "hope" thing.  I say, let them hope for me and let me live in the real world.  That way when the Reaper does show up, I won't be taken by surprise because I let my head get away from me with all that "hope" thinking.  I'll be grounded, and I'll be ready when he gets here.  And there is certainly something good to be said for that.



So maybe nobody really liked reading this.  Maybe you want to slap me out of my negativity.  But I promise you that if another person with a disease and situation similar to mine read it, they would find some comfort in my words because they'd know it's not just them.  There is no shame it getting tired.  No shame in wanting to quit. There is no shame in feeling hopeless. There is no shame in feeling doomed, in feeling there's nothing left to look forward to.  There is no shame in accepting your disease and all its nuances that affect your day to day life.  There is no shame in not having a fear of death.  There is no shame in wanting more control over your life.  No shame in anger, even anger at God.  Feel what you feel and don't apologize for it.  If people shame you or tell you they're uncomfortable with the way you feel, tell them you're sorry for their discomfort, but experience your feelings anyway.  It is your right, because this is the life you were given to experience and you are denying yourself your whole experience in this world if you cater your thoughts and feelings to the comfort needs of those around you who don't like seeing you suffer or thinking that you are going to die.  Someday we all die.  We need to teach people that it is nothing to fear.  Then maybe they can live better lives before they are sick or invalid or waiting around to die like we are.  We owe it to them, we owe it to us.

It is our right.

When Loving Gets Tough

One night, roughly 20 years ago, I sat propped up on pillows in my bed, my head leaned against the headboard with a baby in my arms and my husband snoring beside me.  She was at the most, a few weeks old, her fuzzy orange hair tickling the side of my cheek as I put her on my shoulder to pat her back.  She curled up in the tiniest little ball as I almost struggled to balance her on my arm.  I could feel her tiny breath on my neck, feel her warmth against me as her little body moved up and down with her breathing.  I remember distinctly closing my eyes and committing that moment to memory.  I decided right then and there that no matter how big she got, I would always treasure that little moment we had together in the darkness of my room while her big sister slept soundly across the hall and I struggled to keep my own eyes open.  It was the kind of sweet moment that only comes rarely in a lifetime, and somehow, I  had the wherewithal to recognize it for what it was and store it safely away in my mind so I could relive it over and over again.

It seems like with every struggle we have gone through together since that night, I have needed that sweet memory to keep me focused on who she is and why I love her so much.  In elementary school she was stubborn and resistant.  She didn't want to be part of the group.  She didn't mind staying in for recess instead of playing with other kids.  She only cared about playing with her big sister at home.  Teachers lamented about her.  "She won't listen!" They said.  "She won't do what we tell her!" they complained.  One teacher even told her that if she didn't do her work she was going to end up being a bum on the street.  They said harsh things about her, and so did the kids in her classes.  I tried to help her. Tried my best to undo the verbal damage they were all doing, but it seemed nothing I did really got through to her.  I made her dad pay for braces, so kids would stop teasing her about her overbite.  I let her color her hair and wear the styles she felt comfortable in so she would feel good about herself, but the constant negativity from the kids around her, from teachers and other parents, just dragged her down all the same.

Things would get better and things would get worse, but all through those middle and high school years, she knew she had Mom.  She knew I loved her no matter what, even when I made her mad by not giving in to her demands, she knew.  She always knew she could count on me to lift her up, to encourage her.  She always knew I would fight for her, no matter what.

She had friends come and go.  Some of them hurt her, but she always had me.  She had a boyfriend here and there, and like most boyfriends do, they disappointed her.  But she always had me.  She moved to her dad's to get a car, but she always knew I'd still be here for her.  She moved in with a guy, but she still knew I would love her and do what I could for her.

No matter what, she has always known that my love for her is unconditional.  No matter what she does or where she goes, I will love her.  She is, after all, the source of one of my sweetest memories, and I can't give up on her without giving up that memory too.

Right now she is sleeping upstairs.  Her boyfriend, who means so much more to her than I do, is sleeping beside her.  She's become convinced I don't care about her.  She sincerely believes that I don't want her around, that I only want to get something out of her for my own selfish needs.

Of course she's wrong, but no matter what I say, she'll never believe me.  I know that I have, with good intentions, harmed her by helping her too much.  I thought I was helping her find independence.  I thought I was helping her grow up and learn to take care of herself, bur what I have really been doing is keeping her from her full potential.  She needs a chance to be on her own and figure things out for herself, just like I did.  It's just that I haven't let go of her the way my parents let go of me.  I know it would be for her own good, but true to my selfishness, I have wanted to keep her as my little girl for as long as I could.

I woke up this morning all tearful and sad because I know today's the day I have to talk to her earnestly and try to let her know that I love her, but I'm setting her free.  There's a whole world out there, just waiting to teach her who she is and why she's important.  It's not my job anymore.  I realize all I can do is love her immensely and be here for her when she needs a mom.  I know that she doesn't need me like she used to.  My worries for her are something I have to own.  I have to let her be free to make mistakes and learn from them.  I have to be strong for her and with her, and I have to finally send her on her way, out into that big scary world.  It didn't eat me up, and she's far tougher than I ever was at 20.

I just hope she never forgets the importance of family.  I hope she will remember that I love her always no matter what, even though I can't support her lifestyle.  I hope she won't forget that she has a big sister who loves her and worries over her.  I hope she will remember the little brother who adores her and looks up to her so much.  I hope she knows that, even though he has been the one to make the toughest decisions so far, her dad still loves her too.  When all else in life fails her, I pray she will be able  to always return to our arms for comfort.  I pray she will always be able to acknowledge our love for her, and that she will not abandon the thought that we are always here for her.

I know she must live life for all the good and bad it brings and that like me, she will have her own battles to fight.  I don't want to see her struggle, but I know that struggle is necessary to a good life.  I can't protect her from it without denying her the joy that comes from overcoming it.

I can only love.  It is all I have to give her now, and I can only dream it is enough.