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.

Random Thoughts From Earlier Today

1.It really stings to have someone say mean stuff to you or about you.  It stings so bad that your first inclination is to just discount it all as rubbish spewed from the lips of angry men or bitter children.  But now, lying here alone with a banged up knee and a tube in my belly, it seems as though those comments might have stung because there was some truth in them that I didn't like hearing.

2. I hear people talk about Karma and how everything you do comes back to you in some way, and I examine every inch of my being trying to weed out whatever evil there is in me that makes God or the Universe or whatever need to keep punishing me but I honestly, truly cannot see what it is about me that is so horrible.  Maybe that is my sickness--that I can't see my sickness for myself.

3.I've always been told that when bad things happen to you, it's because you ARE bad.  I used to not believe that, but now I'm beginning to wonder...

4. Every time something else crappy happens, I tell myself it's just to prepare me for the really good thing that's about to happen, but I wonder how long a person can really keep that up without eventually going bat shit crazy?

5.   Sometimes it seems like everything in my life just adds another brick to the gas pedal, speeding me faster and faster toward that padded room and straight jacket that's waiting for me just over the edge of sanity's cliff.

6..  I'm beginning to think there is a line between realistically being optimistic and being completely delusional to the point of never having a negative thought or feeling.

7. Negative thoughts pop into my head daily but I smash them down and replace them with something I'm grateful for.  Some days though, so many things happen at once, so many thoughts and feelings flood me in unison that I'd have to be a whack-a-mole champion to keep them all underground. 

8. On days like today, all it takes is for one tear to seep through an unsecured portal and I am at the mercy of my negativity. 

9.  Eventually I'll be back again, wearing my smile (whether I mean it or not) and forcing myself to be thankful and think positive thoughts.  I just hope I always have the ability to use my own reasoning as a sort of emotional trampoline.  It bounces me around, but eventually, I regain control and can stand up again, even with everyone and everything else trying to knock me down by throwing themselves against it.

10.  Did someone say nap?  No?  Well, I'm saying it.  Sometimes a good sleep can change your perspective better than anything else.  Wish me sweet dreams, y'all.

Taking Off the Mask

I wrote a really long blog post this morning instead of going back to sleep like I really should have done.  It was a great post, filled with sarcasm and wit.  It gave me great satisfaction to write it.  Then when I read over it again I noticed it was really very passive/aggressive and decided not to post it. It's kind of funny (not haha funny either) that I often don't perceive my own anger until I start writing about something that has lingered on my mind. Sometimes we ignore that connection our brains are designed to make between thoughts and emotions, especially when the emotions are uncomfortable.

 I relive interactions and evaluate the commentary that I've heard from others.  I turn experiences and discussions over in my mind sometimes for weeks or months, just trying to create any logical reason for them so I can evade the reverberation of negative emotions.  However, when I am finally ready to sort it all out in black and white, I find myself acknowledging the truth that no matter how hard I strive to  intellectualize, I inevitably end up with some kind emotional debris left over from every conversation, every situation from which I walk away without resolution.

Too often, those emotional fragments I carry around are filled with anger that I am afraid to express.  If I allow it to escape my head and find its way out of my lips, I may forever regret stating what I feel. The problem is it escapes me anyway at the least expected moments when I make some off-handed comment or joke that jabs at a tender spot in the person I'm annoyed with. Or when I post something on my blog that to me seems perfectly witty and entertaining, but ends up being a diatribe against the person who I believe has mistreated me in some way.  Intellectually, I know blog posts and conversations filled with sharp verbal gouges are the wrong way to handle my dismay, but I am often too cowardly to come right out and say what I mean without masking my feelings behind witticisms and boorish comments that are designed to get a rise out of the other person.  My logic is often, "you hurt me with your words, so I'll hurt you with mine."  The problem with my reasoning is that it solves absolutely nothing.  It only serves to create more tension, more confusion and more conflict.

This passive aggressive way of relating is so much harder to overcome when you are struggling to communicate with another person who is also passive aggressive.  You recognize their behavior because you share it.  You know that the "joke" he just made at your expense wasn't just a harmless wisecrack.  It was meant to sting.  But you don't always know why.  You don't always know what you've done to make the other person angry with you, and you aren't likely to find out because he or she is too afraid to come right out and tell you. You end up going in circles, insulting one another, doling out "payback" in the form of rude comments and making sure you never (or rarely) give the other person what you know they want from you.  It becomes an ugly nightmare that usually ends as an ugly nightmare only to repeat itself in the next friendship, relationship or family dynamic.  I'm not saying passive aggressive people are bad people.  We are just insecure, often damaged, fearful people who have never had the advantage of observing how an emotionally empowered, healthy person deals with conflict.  We are feeling around in the dark, trying to figure out how to get what we want from life without unsettling anyone or feeling rejected by them.

What is it about anger that is so darned scary anyway?  Everyone gets angry.  We all have the right, the need to get angry sometimes.  It motivates us to find solutions. It gets us out of some dangerous and unhealthy situations.  Anger opens our eyes, it makes us see things that we often try very hard not to see.  Anger can transform us if we learn to use it in constructive ways, but most of us never learn how to use our anger for our own good because it frightens us.

Anger feels bad.  We react to anger physiologically, whether we mentally acknowledge our ire or not.  Blood pressure rises ("My blood was boiling!") Heart rates increase, sometimes our stomachs get tied in knots and we can't eat.  We get physically anxious, can't sit still, can't sleep.  We sweat, our muscles tense up, our faces contort.  Anger feels bad all over, from the depths of our souls to the soles of our feet.  It is unpleasant and we never want to feel it, but it often cannot be avoided.

Anger comes from that place inside of us where we want things to be fair and just.  It comes from the innate need that all healthy human beings possess to achieve balance and harmony in life.  When we see someone we love being mistreated, our sense of justice becomes knocked off-kilter.  When someone we care about makes a hurtful comment to us that we feel we didn't deserve, we feel our integrity is being stripped away.  When someone challenges our intelligence, our competence, even our appearance, we get addled. When someone dismisses our feelings or beliefs, we feel our very essence has been quashed. It is the sense of "right" within us that turns our feelings of resentment, hurt, invalidation, and injustice into indignation.  Something, we know, is "off" and we need to take action to set the record straight.

But our thoughts get the better of us, when we start to allow ourselves to indulge in the  "what ifs". What if we confront the person who said or did this horrible thing to us or someone we love, and they end up making US look foolish?  What if we tell them how we felt when they disregarded our thoughts or feelings, and they again, invalidate us?  What if they get more angry at us for confronting them than our anger at them is for treating us unfairly?  What if we ruin our friendship, family or relationship by rocking the boat instead of just going with the flow and letting them get away with their hurtful, unfair behaviors?  Is it really worth it to take the chance?

Passive aggressive people are often sabotaged by their own thoughts.  Those thoughts, in turn, end up causing them to undermine their relationships with others.  We get locked into a battle of wills with one another, no one ever finding enough fortitude to calmly and lovingly talk about our anger or the pain behind it, for fear of rejection.  But a snide comment here and an unkind jab there;  a little joke once in a while about the things that annoy you about one another, a blog post or a text, or even a note left on the office refrigerator often do more damage to a friendship than one honest, emotional, tough conversation could ever do.

So, I'm glad I wasted some time this morning writing a blog post that I will never publish.  It gave me a chance to really examine myself and my motives.  It gave me some perspective that I know I've been missing for pretty much all my life.  I'm not saying I've found the courage to face my fears and just go ahead and blurt everything out to the people in my life who piss me off, but I at least acknowledge that some of those same people are important to me, and that they are important enough that I need to try harder to be more honest and open in my communications with them.   I can't keep letting myself hang on to anger and hurt until it destroys me and ruins my relationships.  I have to somehow face this fear I have of expressing myself honestly and lovingly so I can know the peace of living an unrestrained life.

10 Things I Wish I Knew BEFORE I Broke a Leg...

So, I busted up my leg.  Okay, the dogs helped.  But my leg is so busted up...I'm a few days away from my 40something birthday, and I have the first broken bone of my life.  Call me crazy, but I'm kind of proud to have finally joined ranks with my fellow human beings who, at some point in life, have suffered the insane amount of pain that comes with a fractured bone.  Additionally, I'd like to ask them why they never warned me concerning how much of a challenge even the simplest of things can be when you can't use one of your legs.  In the last few days, I believe I have grown to respect people who adapt to life without the use of one of their limbs more than I ever could have before.  This crap isn't easy.  I know I have a long way to go with this broken episode of mine, but here is what I have learned so far, that I wish someone else had prepared me for like, I dunno, maybe the day BEFORE my leg got broken???

1.  Being dependent on other people for even the smallest of things, really humbles you.  I was with a friend, thank goodness, when I had my fateful run in with two excited dogs who, not really minding that I was standing in their way, plowed right through me as if I weren't there at all.  Then, thinking I was playing with them, the dogs started to paw at my head and lick me furiously until they were chased away.  My first inkling of how bad this whole thing was going to suck was the moment my friend told me to "just lie there" while he took one of the dogs back to her kennel.  And there I was.  Lying on the grass in the hot sun, all alone, listening for the sound of footsteps, wondering if maybe there was a chance I wasn't really that hurt.  Then came the moment that I had to be literally picked up off the ground, unable to bear any weight on my left leg. And then having to be carried to the car, wheeled into the ER, carried up my front steps, helped into and out of the shower, helped to and from the bathroom...you get the picture.  I'm super thankful for the loyalty of such a good friend, who went out of his way to help me a much as he could.  But I really, really hate being "weak".  I don't like asking for help with anything, but when your leg is aching and useless and you've held your bladder way longer than you should have already, you find a way to swallow your pride and ask someone to help you up.  In my opinion, having to depend on someone else on such a level is one of the most deeply humbling experiences ever.

2.  Walking with crutches is NOT as easy as other people make it look.  I might as well be a clown on stilts for the first time.  Seriously, I've already fallen once since breaking my leg, and almost fallen a number of other times, all while trying to walk with crutches.  Needless to say, I'm getting a little paranoid about trying to get around with these instruments of torture.  Yes, I said torture.  My neck is sore, my shoulders are sore, my armpits are sore, my hands are sore from putting my weight on them.  My biceps are in knots.  Maybe an up-side to this whole thing will be my gaining some definition in my upper arms, but I'm not sure that's going to be worth all the stumbling around I am doing in the meantime.  I'm sure if there were video of me hopping around on crutches, it would become a YouTube sensation in minutes, just because of how insanely comical I must look using them.  I am not a pro.  It's obvious to anyone looking that I have never used crutches a day in my life.

3. It literally never stops hurting.  Granted, I am only on day 3 and they've not been able to do anything to fix the break yet, but no one ever told me how bad broken bones hurt, or that the pain is relentless.  The ER sent me home with a prescription for pain meds, which I promptly filled and began to take as directed, but they did little to nothing to alleviate the pain.  So I called them back yesterday and they called me in a prescription for the SAME medication, only a 1.5 mg higher dose.  It still basically does nothing, other than knock me out.  I suppose it could be worse.  I could be awake for all this...

4.  And all that leads me to my next lesson:  The fact that so many people abuse prescription pain medication is making it nearly impossible for people with REAL pain to get pain medication that actually works.  I learned that Lortab is a thing of the past, and has been replaced with something called Norco.  Norco is what I was prescribed.  Twice.  And it makes me sleep, but that's it.  I could call back again and ask for something different, but now I'm worried that if I keep hollering about more pain meds, they're going to flag me for being a drug seeker and then I'll have to just suffer for the rest of my life because no doctor anywhere will ever prescribe pain meds for someone who has been labeled a drug-seeker.  So, I'm dealing with it the best I can--sleep and distraction.

5.  Boredom from not having the motivation to get off your ass is not nearly as bad as boredom from not being allowed or able to do what you want.  I admit, there have been plenty of days when I was just unmotivated to do much and I usually end up boring the hell out of myself on such days.  But when you actually WANT to get up and do stuff but can't, it is mind numbingly frustrating and insanely boring.  There's only so much Facebook, Google and Netflix a person can take over a few days' time.  I need fresh air.  I need sunshine.  I need to see strangers in their cars at stoplights, I need to talk to people I don't know.  I need human contact.  Which leads me to my next point:

6. Nobody likes hanging out with a gimp.  When I say gimp, I refer only to myself and my current predicament.  My kid stays in the other room--afraid he will accidentally bump into my leg and hurt me. One of my daughters has figured out I can't go up the stairs and get her when she hides out in her room and refuses to answer her phone.  My son also has figured out that I can't chase him down when he storms out of a room and slams the door behind him.  Everyone seems to understand my recent limitations, and everyone seems to have already figured out how they're going to exploit my limitations to their benefit...well, at least these two kids have.  So here I am, hanging out in my boring room all alone with a computer and Netflix and a bottle of Norco.  Party time.  Yay.

7.  The dog still doesn't get it.  She loves me.  I know that if she were to understand how her reckless behavior has injured me, she would surely be repentant.  Right?  She would, wouldn't she?  Well, either way, neither she nor her accomplice have a clue as to how their rambunctiousness has led to my crooked broken leg.  She still expects to be fed and walked at the same time every day.  She still wants ME to be the one to feed her and walk her.  If she's in her crate when I go gimping by, she whines for me to come get her.  Only I can't hang onto her leash and stay on my crutches at the same time and I'm not brave enough to dare it yet. I have already envisioned myself with some more broken limbs as a result of trying to make it down the back steps with her on a leash an me on crutches.  It's a bad scene.  I want to avoid it if at all possible.

8.  There's no rest for the accident prone.  And I am the accident prone.  I fall. I get bruises.  I cut myself with kitchen knives and just a few days ago, I dropped a 2 liter Coke on my foot.  There's a bruise to prove it.  I'm thinking I should just start having someone follow me around with a camera in anticipation of my next mishap.  Who knows, I might become the next viral sensation on YouTube.  I might land some advertising gigs to post along with my slips, trips and falls.  I might get rich off this!  Nah, probably not and even if I could, would it be worth the embarrassment??

9.  The impact of two muscular dogs running into a human at full speed, and the resulting fall from said run-in, will leave your body feeling like you were in a car accident.  Seriously, if you've ever been in a car wreck that was even slightly more than a fender-bender, you know what I'm talking about.  Your whole body tenses upon impact, then the sheer force of the impact itself rattles your insides.  You might feel fine the day it happens, but after you sleep for a night and get up the next day, you're so sore you can barely move.  I feel like every muscle in my body has been worked out overtime this week.  It's starting to get a little better now though, and I'm hoping that the walking on crutches things improves as the rest of my body recovers from the soreness.

10.  I hope no one asks me for a match.  Seeing as I haven't yet figured out how to carry a glass of water from the kitchen to my room while hanging onto crutches, I figure I'm probably much safer not reaching into my pocket to hand anything to anyone for a while at least. Maybe that's the worst part of all this...Instead of being able to help other people out, I'm having to let them help me.  It's not my nature to ask for help and I still am not all that comfortable receiving it.  I know that probably makes me seem like an arrogant asshole. It's not that I think I'm above needing help...It's just that I think I'm above needing help...Ugh, Okay, so there's the one thing I need to learn from all this...I got it, I got it.  Now, will someone please bring me a roll of toilet paper?  I've been stuck in this bathroom waiting for someone to come along for at least 30 minutes now...

Life's Transactions

I used to be horrible at keeping a checkbook balanced.  Every month, without fail, I would check my transactions against my bank statement and find some ATM withdrawal or check-card purchase I had overlooked.  It was discouraging.  It was disappointing.  I got so tired of thinking I had more money in the bank than I actually had, and so frustrated with myself for not being able to keep up with my purchases or withdrawals.

I eventually started keeping every receipt, tucking them into my purse for safe-keeping until balancing time.  I wrote down every withdrawal and every purchase in my little bank book.  I was determined that I would get control over this.  I would win. But then when I got my statement there would be unexpected bank fees or an automatic bill debit that I forgot about. It seemed like an un-winnable game.

A few years ago I switched banks.  The bank I use now sends me a daily email of all the activity on my account from the day before.  I can actually keep up with my deposits, withdrawals, purchases and automatic billing debits by just checking my email every day. I even had my debit card programmed so that it doesn't work at all if there isn't enough money in the bank to cover a purchase. Now I always know my balance.  I haven't had an overdraft in 4 years or more.

If only there were a tool that made the rest of life so easy, huh?  The struggle with banking behind me, I now find myself facing a different kind of balancing act that seems impossible to ever get right.  It's about my relationships with others and the overwhelming sense of guilt I have when I feel I have overdrawn on my emotional accounts with them. I just feel like some people give me too much and I don't deposit enough.

On the other hand, there are some relationships where I feel as if I'm making all the deposits.  It seems I am draining my own reserves to give to others while getting nothing back on my investments.  Those are the times when I'm putting nothing into my own account, nothing, that is, besides self-loathing.  I start to feel like I'm working too hard at a job that is never going to pay me what I'm worth.  I start to get frustrated with myself and with the people who seem to take and take without ever putting anything back into our relationship "account."  I get resentful and demanding.

The guilt of not giving enough coupled with the resentfulness of feeling taken advantage of lands me in a state of profound imbalance.  I have struggled so much in an effort to moderate my behavior to fit the transactional value of the relationships in my life.  I start to believe that everything must be tit-for-tat.  Everything has to balance out.  Everything has to be fair.  I have to give more than I take or I will feel inadequate. Then again, if I give more than I feel is fair, I feel put upon.

It all boils down to my need for personal empowerment.   I need to feel in control of my life.  I need to decide for myself what and whom to invest in.  I need to have control over how much I give.  Sometimes, I start to feel as if I need to control what other people contribute in order for me to feel empowered or fulfilled.

But the truth is, life isn't always balanced.  There are times when we all need to give more than we get. There are times when we need to receive more than we think we deserve.  I have always been amazed by the concept of grace, but I've never before realized that it was something I could give and receive in my human relationships.  God's grace is unmatched, I realize that.  But in the little everyday bits of life, we are able to demonstrate his love when we accept from others what we feel we haven't earned.  We are privileged with the joy of offering more than we feel we owe.   I can't control anyone else's decisions.  I can't force them to give me what I think I've earned, whether its love, respect or affection.  What I can do is change my own attitude, from one of guilt and anger at myself to one of gratefulness and kindness towards the people who matter the most to me.

I can't adequately keep a record of all the deposits and withdrawals in my life.  It would be impossible, and in the end, wouldn't really matter anyway.  It's okay, in this instance, to be overdrawn once in a while.  It's a matter of privilege when I am able to give to someone else whose account may be more depleted than my own.   The mistake we all make is trying to keep score.  Keeping score makes us feel powerless.  It depletes us of the positive regard for ourselves that we need to maintain in order to keep our emotional balance in check.

So I want to take a second to thank the people in my life who give and give to me without ever asking for or expecting to get anything back.  You are truly amazing and I am so grateful for the grace you extend to me.

I also want to thank the people who take from me.  You give me a sense of purpose and make me feel like I have worth.  Just knowing that you want and need what I have to offer makes my life fuller and richer.  You give me a reason to get out of bed every day.  You give me a reason to care. You make my life worth living.

Maybe someday a life hacker will come along and figure out how to make all the give and take of interpersonal relationships balance out so we all feel better about ourselves and the people we love, but I doubt it.  Some things in life are never meant to balance out perfectly.  The imbalance keeps us on our toes.  It makes us never give up.  Maybe it is the very reason we are here.

Assumptions

"It's really too bad about your disease." She said sadly.  "You're just too young to have to even think about spending the rest of your life alone."

"Yeah, it does suck." I agreed, wondering what made her even say such a thing.

"Well, like, maybe you could find an older man who didn't care about sex anymore." She offered.

"Why would I want to do that?" I asked, puzzled by the line of conversation.

"I don't want to discourage you," She said, "but isn't it going to be hard to find a guy your age who would be okay with not being able to have sex?"

"Probably." I answered. "But I wouldn't be interested in someone who wasn't interested in sex."

"But...you can't, can you?" She asked, genuinely baffled.

"Uh, yeah, I can." I said.

"But...how?" She wanted to know as if it were any of her business.

"The same way everyone else does."  I was getting annoyed.  The truth was, it wasn't the first time someone had assumed that since I was on dialysis, I could no longer function like a regular human being.

I took the time to explain to her that I have a tiny tube in my abdomen that in no way affects my female parts or my ability to engage in sex.  She seemed relieved.

"Oh, that's so good to hear!" She exclaimed.  "Well, you can have any man you want, then!"

"Right." I said.  "Any man I want."

People can make some pretty bold assumptions with just a tiny bit of information sometimes.  It happens to me a whole lot these days.  Since I had this tube placed in my abdomen almost a year ago, I have lost count of the number of people who have either assumed my sexuality was a thing of the past, or who have just come right out and asked me if I could still have sex.  It seems to be the first thing anyone thinks about.

No one considers that the most difficult thing for me in establishing any kind of relationship, is the very fact that I have this disease to begin with.  No one wants to be saddled with a sick person.  Very few men are brave enough to risk loving a woman who is depending on a machine beside her bed to keep her alive.  Plenty of them will step forward and offer to give away their kidneys, but practically none are bold enough to offer their hearts.

I don't blame them.  If I were them, I would be hesitant too.  I realize how much I would be asking of someone to commit to a life with me.  I'm a lot of trouble.  I'm stubborn.  I instigate arguments, I hog the covers, I get defensive and unreasonably angry over little things sometimes.  I make bad decisions, I let people take advantage of me and my car is usually far too messy.  Nobody's perfect, right?  But on top of the usual human flaws, I have this huge physical hurdle to overcome.  Who wants to put up with that?  Hell, I don't even want to deal with it.  How can I reasonably expect anyone else to take me on?

I'm not saying it doesn't get lonely.  It does.  I sometimes feel like I am in a desolate place and that I'm stuck there without hope of ever escaping it.  It seems unfair.  It makes me angry and even depressed at times.  "You have your children!" people say.  And I do love them dearly.  I'd take nothing for them. But children are not partners.  They aren't meant to share our cares or stay up laughing with us into the wee hours of the morning.  My son, especially, depends on me.  He isn't responsible for being my companion and he shouldn't be.  Being a parent is just not the same as being a companion.

Sex.  That's the easy part.  If love were as easy to obtain as sex, life would be a breeze.  But love takes courage.  It means committing in some way or another, to the acceptance of another person, faults and all.  Love isn't something you can give and then walk away from so easily.  It is an investment in another human being, not just their physical form, but every part of them.  Some of us are just too hard to love.  Some of us are just not strong enough to take the risk.

After all, what if I up and die?  I am well aware that my faults assure that kind of trouble far outweighs any benefit anyone could get from loving me.  It is only by the grace of God that any of us are loved. We can't really do anything to earn it.  I understand that human beings are just not capable of giving one another the kind of grace God shows towards us.  It isn't easy for us to love in spite of the obstacles.  It feels far safer to shield ourselves from pain; even to consciously work at not loving someone in order to protect ourselves.

I know I will probably never get a return on the investment, but love is important to me.  Even if I can't get it, I feel more whole when I can give it.  Maybe that makes me weak.  Maybe it makes me pathetic.  I really don't know how it makes other people perceive me, and it really doesn't matter.  At the end of my life, all that will matter is how I invested the good God gave me.  I'm grateful for the ability to love. I am learning to love without expectation.  I'm learning to give without hoping to receive.  I'm learning to be my own companion.

I have a long way to go.  Disappointment creeps up on me still. I still want too much from people at times.  This is just a journey without a destination--it isn't a race.  I know I'll never arrive, but for once, the most important part is not where I will end up.  It's the trip.

I'm bracing myself for one wild ride.